An Unfinished Life

It's Been a Long Time

2010-04-12T13:17:00.003-04:00

Dear Friends,

I know it's been months since my last post...and that I promised an update would be forthcoming soon. Honestly, I don't have any good reasons as to why I haven't been writing...I think I just needed to have a little space. I needed to try to find a way back to the person I was before my son lived...it's not been an easy road...I've certainly learned that we can't put the past behind us...It's just not possible. No matter how hard I've tried to bury my sadness...it comes back in the most unpredictable ways...

On Saturday night, Ryan and I sat down and watched an old movie classic, Saturday Night Fever. One would think that as harmless and so unrelated to my experience as that movie was to my life...It wouldn't have garnered any kind of emotional response or meltdown. But it did....probably the worst I've had in months. During a particular dance scene, Ryan started laughing and, as I watched his smile and his movements, it triggered the most upsetting episode of tears that I've had in quite awhile. I didn't see him as my husband at that moment...but I saw him as the little boy I've viewed in many home movies...chubby cheeks, wide eyes.. I'd seen him this way in old family movies we've watched together...Ry was such an adorable little boy. But, in that moment, my thoughts shifted to Christian. My sweet boy whose face I will never forget... I saw him a little older...in a fit of laughter...looking sweet and innocent. It hit me hard...and I was snapped back to the reality of my life..of longing for moments I will never share with my little boy.. and it hurt so much. It has never stopped hurting.

That's why I'm writing to you today... I've been trying to ignore my pain. But the reality is this is my life. This quiet sorrow I've been trying to hide....it is who I am.

There is a dichotomy which is evident in all that has transpired over the last year and a half. On one hand, many people have suggested that I am a strong person for absorbing this loss and advocating for the beautiful life of my son.. But the reality is that I have been wounded...of course, it's not a mortal wound.. but it is permanent. Today, I am weak in my resolve to grow from the death of my son. I struggle each day with how I am going to project myself to the world. Will I be strong or will my eyes be puffy from the tears I've shed as I relive the terrible day my son died in my arms. Today, my eyes are puffy.

Dichotomy? I think so....how can one be strong...and weak? How can I feel like I've experienced the most amazing and joyful time of my life with God's very presence surrounding my family in a veil of sweetness...and then feel choked with sadness and despair over loss so deep? This was the deal... I made my peace with God... let me know my son.. and I will remain faithful to His plans for our lives. I will never doubt God's plans for my son..because I know Christian's life had purpose. But what about me?

My friends, last year was a tough year. I felt that I had truly lost my way. I want to share with you some of the things that have happened over the course of the year...I have been hesitant to share them with you...I wanted to project a person who could overcome grief and see sunshine and God's glorious promise of life. I wanted to make all of you proud of me. But, in doing so I have denied my right as a mother ...as a human to grieve. So, here it is for all of you know...good, amazing...and bad.. This has been my year.

Of course many of you already know that 4 months after Christian died, I broke my wrist...and it couldn't have happened at a worse time. I'd been so sad during that time. Honestly, there were many, many days where I sat in one chair...looking out at my son's garden for hours on end. I remember sitting down with my coffee in the morning and getting up when it was time to go to bed..barely conscious of the time and only briefly noting the shadows that crossed the room from morning til night.

To tell you the truth, I was afraid to go to sleep. The last day my son lived on this earth continues to haunt me...even to this day. And I've had nightmares about those final moments. He died so many times on that Friday...each time I held him and kissed him thinking he died. And he would struggle to come back to me and his father . I know he didn't want to leave us. I remember begging him one final time to please stop fighting. I felt so powerless to help. I would have traded my life for his...gladly. Just please, God, please take my little boy...don't let him suffer anymore. I remember the way he sounded when he took his last breath...I remember the last noise he made...a soft whimper.. And then he died. And a part of me died too. I've held these things inside for too long. My sweet, sweet boy died in my arms and I couldn't do anything to save him. It will haunt me for the rest of my life.

Those months afterwards were hell. It was an effort to move and I spent so much time thinking of ways I could check out of this life so that I could join my son in heaven. The thought consumed me for months.

When I finally had my surgery in January, my mood seemed to elevate somewhat because I was feeling better about my injury and I wasn't in constant pain. Truthfully, Ryan and I had made the decision to try InVitro once more and were scheduled for our cycle in March. I scrambled to try and get healthier so that my chances of getting pregnant would be increased. I shoved all the feelings I'd been holding on to in the back of mind and focused on healing. We only had a month to prepare.

I've always been an athletic person...and getting back in the gym would be a natural way for me to relieve the depression which seemed to lay claim on to my well being. But shortly after starting a workout regimen, I hurt my back. Probably the most excruciating physical pain I've ever been in in my life. I couldn't move. Even now I shudder when I think of that pain....I would rather break my wrist a thousand times over than to have to withstand another back injury.. But nevertheless, I completely reverted back to depression. I had to stay in bed for almost a week...trying to relax my muscles enough to be able to move again. The slightest movement sent unbelievable pain coursing throughout every nerve in my body.

It was also during this time that Ryan and I had to start our InVitro cycle.. I could barely sit in the car to get to my doctor's appointment. And it took every ounce of strength I had to lift my legs in the stirrups for my exams. But I did it. And after about a week and a half...the pain in my back subsided enough to where I became more mobile.

When we started our IVF cycle...I was definitely on the mend...but had to endure daily injections of hormones in my stomach...I had done it before..but for some reason, this cycle was painful. Each day, 2x per day I got my shots..and a little bruise on my belly where Ryan would stick me. And I kept saying it's okay...we're going to make another baby. It will happen.

During all of this...I continued to push past my grief. I didn't want to think about it although my internal torment showed through in other ways. I started losing a tremendous amount of hair... and my skin broke out in a rash that would ultimately take me 8 months to get rid of. Physically I was in horrible shape and I was tired.

My IVF cycle only produced 3 eggs... again, another tick against my emotional well being. My nerves were frayed and I was on edge. But, by time we were ready to "launch"...we had two viable fertilized "A" quality eggs that were implanted into my uterus.

Ryan and I were ecstatic...all the physical challenges I'd faced up to that day seemed to disappear and Ry and I were confident we would be making babies again. This was my last chance. Ryan and I have exhausted our financial resources trying to have a family...and time was not my friend. My biological clock was ticking loudly. And I felt the weight of this on my shoulders.

Sadly, it was not to be. In April, my cycle came and my hopes for more biological children were dashed. I had failed. It was a bitter disappointment and I hated myself. I beat myself up wondering if it was my fault...I was injured...I was depressed...I wasn't healthy.

But mostly, I quit asking God for help. During this time, I needed his help. I needed Him to make me feel special...the way I felt when I was pregnant with my son. Back then, I spent a lot of time talking to God and he was there with me...helping to buffer the uncertainty and pain of the future. But somehow, during my time grieving, I'd backed away from my relationship with God. It was a tough and lonely time. Part of me wanted to know Him more...and yet I looked for other things to divert my energy to.

I learned that without God...there is no healing. We are only kidding ourselves if we think we can do it on our own. Trust me, I know... I've tried.

Also, I had been seeing a grief counselor to help me deal with the pain of those last hours with Christian... too much to bear. But in April, when she diagnosed me as being "severely depressed" and suggested medication, the fight in me began.

I was so outraged by the notion that I could be labeled as being, "severely depressed". I wanted to scream at her and ask if she had ever lost a child. I had earned the right to be depressed...the battle scars I have on my heart aren't there on their on volition. The idea of it all made me so mad...that it spurred me to get better...what ever that meant to the outside world. I think it was at this point that I realized perhaps sharing too much of my life may be detrimental to me... I didn't want to be judged and I felt my counselor was doing just that.

In a way, I believe that's why I couldn't write much last year. Each time I wanted to open up about what was going on with me...I felt paralyzed by fear. I didn't want to be judged for not being strong enough or faithful to God enough.

I am so sorry for being absent. Even though most of you don't know me personally, you are all my friends. You have supported me and cried with me.. You have laughed with me and have patiently listened to my stories. And I haven't trusted you enough to let me be me. Even now I am ashamed of the words I write. I'm sorry.

From late April until now, I have spent much of my time trying to suppress the emotional roller coaster of events that continue to shape my life. I have been focused on getting healthy...which has eliminated virtually all of the dark and dangerous feelings I kept bottled up inside.

Getting fit and healthy again makes me feel good about myself and my life. So I go to the gym...I eat right...and I've lost nearly all the weight I gained during my pregnancy. Some days it feels as though I've climbed Mt. Everest to reach the place I'm at today...many weeks I plateau..and revert to a place and time where sadness grips my heart. Saturday was one of those days...but it's okay. I am finally able to open up out my trials this past year.

I feel good about it...reconnecting with all of you has been long over due. And I've missed you.

I started working again which has made a world of difference in my confidence. Before getting back to work...I had HUGE anxiety about being in public... about talking to people... about being away from home. After Christian died, I separated myself from my circle of influence here in Naples...I shopped in different grocery stores, I got my hair and nails done at different salons.. I didn't want to run into anyone who knew my situation because I couldn't bear the look I got...that look of pity. I hate that I'm telling you this, but you need to know. I shut out some pretty amazing people in my life. People who mean well and who care about my family. I shut them all out because I didn't know what to say. All is well....things are great. Really? Really.

At work, I got my confidence back...I am blessed to know some pretty awesome people who have embraced me for all that I am. Today, talking to people is no problem. I can do that. Completing a thought ...no problem, I can do that too. And taking care of myself...I can do that!!

I guess what I am trying to share with all of you is that....the whole process of grief is not a steady climb to eventual healing. I will never be the same as before. I can be happy, sad, very sad... and still be hopeful that tomorrow will bring a better day.

I have fought through a lot of pain, physical and emotional, and have hard earned proof that even in the midst of despair we can find the strength and grace to handle anything that comes our way. BUT we cannot do it without our FAITH in God. I truly lost my way last year. But each day, my life continues to get better.

I miss my son. There isn't a day that goes by where I don't think of him. Each night, my husband and I kiss his bear goodnight... and his garden is just magical. I can't wait to show you pictures of his special place...I honestly believe God has his green thumb on our little plot of land. Before Christian's garden, Ryan and I couldn't grow a weed...and my son's place flourishes..everything flocks there..birds, squirrels...I've even had a couple of ducks! It's a source of comfort to me each time I look out my window!

So I know this post is long...but let me close with this...I've had quite a year...good, bad, amazing... I still feel optimistic that life will only get better. I know I will see my son again...I see him in my husband! What a beautiful reminder that we made this incredible little boy together.
My relationship with Ryan continues to blossom....he is the most amazing person I've ever known.

And....Ryan and I are parents...Christian is our little boy. Perfect, beautiful...amazing! And he is going to have a little sister, Maya... Yes, friends, we are adopting a little girl from China....

More good news to come...

Love you all,

Leah

Christian's Birthday Tribute

2009-08-18T20:31:00.004-04:00

Dear Friends,

I am working on my next post in the next day or two. But, I wanted to post this video Ryan made as a tribute to our son's life. Today is Christian's birthday...so I much I need to say...but I want to let this video tell you some of our story...

You'll have to pause my music at the bottom of my page in order for this video to run properly...

With Love,

Leah

Coming up for air

2009-05-14T12:14:00.002-04:00

Dear Friends,

It's been three months since my last post... a long, long time, I know. I have no good reasons for my absence... I guess I just needed some time to myself.

Many of you have written emails letting me know you are still here with me on my journey and I do so appreciate the support and love you continue to show me and my family.

It's been nearly nine months since Christian died and still I have trouble coping with his absence from my life. Will the pain ever go away? I don't think so. And I hope not. This pain has left a scar on my heart that will forever remind me of the most joyful time of my life. On most days, I welcome the constant heartache. Because with it comes the vivid memories I have of my son. Joy, love, loss, loneliness... all feelings which have permanently taken up residence in my heart. No, I am not the same person I was a year ago...when I began this journey. I was innocent then...so naive. I feel I have aged a hundred years since that time.

I've spent many hours in Christian's room. Nothing has changed... His toys, clothes and bassinet are still there....waiting for him to come home. I am unable to pack them away...afraid that by doing so, would mean admitting to myself that he is truly gone forever. And, I'm just not ready to let him go. Some days, I feel this giddy excitement when I cradle the teddy bear which held constant vigil over Christian's little body while he was in the NICU. It's almost as if I'm anticipating seeing my son again...and then reality hits me. The precious few days I spent with my son are all that I will ever experience with him in this lifetime. That bitter reality chokes me. Even now, tears form in the corners of my eyes. I miss my son so much.

This past Sunday was Mother's Day... another holiday...another first...another dismal reminder of what I had...of what I've lost. I suppose it's unnecessary to tell you that it was a tough day. My mood began changing a few days before Sunday... sadness...uncertainty. Would I be included in Mother's Day and all the fanfare which make up the day? I wasn't sure... Of course, I carried my son for 8 1/2 months... took the best care of us during that time. I gave birth to him...made the best decisions I could for him when he struggled to live, and I held him close...my tears covering his face as he took his last breath in my arms. I am a mother, right? I had 4 days and I did the best I could. I am Christian's mom... I was there when he took his first breath....and I was there when Jesus called him home. I thought I would be included in the day... but I was disappointed.

I made mention to Ryan a few days before Mother's Day that I was sad. Somehow, he mistook that statement into believing I did not want to celebrate the day. And that's just what happened. I was so horribly let down and hurt.

We woke up early on Sunday morning because we planned to surprise Ryan's mom for Mother's Day... Since she lives 1.5 hours away, we needed to move quickly to get to Sarasota to meet her and Ryan's younger brother, Mike, for breakfast. I remember waking up and my foggy morning brain hearing Ryan say, "Happy Mother's Day". He said it in a low tone...almost somber for the occasion and I couldn't help but think that I must have heard him incorrectly. I didn't press him, but rather, I acknowledged the sentiment with a wistful smile before I bounced out of bed to get ready for breakfast.

Little did I know that would be the extent of what the day would hold for me. As the day grew longer, my heart sunk to the lowest depths. My first Mother's Day and I would be forgotten.

At any rate, breakfast with Patti went off without a hitch...she was surprised and we were elated to be able to spend the time with her. On the ride back home, we were both off in our own little world... the combination of a hearty breakfast and a long trip back home made for a lull in conversation. We were exhausted! And, as soon as we walked into the house, we both made a bee line for the bedroom for a mid-day nap. At this point, I still held out hope that Ryan would give me a card or letter...something to mark the day. I drifted off to sleep determined to give him the benefit of the doubt...although my rest was constantly interrupted by an awful pain in my stomach. I knew he forgot about me.

I don't know at what point in the day when Ryan realized he made a grave error...I could only tell later on in the afternoon because he was very quiet and VERY reserved. For my part, I fought hard not to crawl back into bed and cry myself back to sleep. I wished the day would hurry up and be over with... I kept telling myself this was nothing compared to what I've experienced in the last several months... I could handle disappointment. But I was on the fringe...

By the end of the evening, our conversation basically consisted of one word sentences...and several, "umm hmmms". There was a huge and vast empty space between us waiting to be filled with some sort of explanation...but it never came. We went to bed uneasy about what transpired throughout the day.

The next day was a blur... it was as if the air was sucked out of the house. It seemed as though we couldn't be near each other. We weren't fighting...we weren't bickering...we just weren't in sync. I got a card in the mail... a Mother's Day card from dear friends of ours...but it was a God Mother's Day card...no mention of my own son... I think that was the straw that broke the proverbial camel's back for me... I was HURT.

I went to bed that night doubting my relevance as a mother...If no one else seemed to think I was a mom...perhaps I really wasn't. I was sick hearted and I missed my son. I kept repeating the words, "I am a mother"....over and over again until I fell into another restless night's sleep.

Everything finally came to a head on Tuesday. I finally asked Ryan what I had done to make him behave this way. The pain in my voice was evident because with each word came a pregnant pause...I had to choke my tears down and it was a struggle. He just said that he was, "going through some things..." and left it at that. Angrily, I snapped that while he was dealing with his issues, he was tearing my heart out. I hung up on him...disgusted with myself for losing control.

About an hour later, he sent me a text message asking if we could talk when he got home. I never responded...too afraid of what I might say to him in anger. It took a monumental effort for me to meet him at the table for a discussion. At this point, I felt indignant... he hurt me and I wanted make sure he knew it! But after I sat down and looked at his face, I realized he was hurting just as much as I was. Instantly, the stiffness left my shoulders and I let them sink down...the weight of all the pain I was feeling bearing down hard. All I could muster in that moment was a pitiful and questioning look.... "Why?...What happened?"

After several moments of awkward silence, we broke the ice... In a fragmented voice, he told me he was sorry....he misread my wishes about Mother's Day and he felt horrible. Actually, his words came out in bits and pieces...but I could put everything together..I knew what he was trying to tell me. I was okay after that... all the disappointment left me and I was OK!

We struggled through the next several minutes...trying to find our way back to the easy rapport we've managed to cultivate over the years. But it was hard... on both our parts. We stumbled over words and had long period of silence between us. But the huge cavern that separated us seemed to shrink with each passing minute. Finally, he got up put his arms around me and told me I was a great mother... We just stood there...hugging each other. Our actions speaking louder than what our voices could communicate. We were back on track...

What amazes me about this event is just how fragile our relationship really is. Ryan and I have been through a life changing experience... we had a son together. And, he died. We have cried together, laughed together...and truly leaned on each other in the most difficult of times. And yet, we still have much to learn about each other. We are still growing in our relationship. Christian's life was the pinnacle of achievement in our marriage. But we still have much to learn about each other and we are still building a life together. There will still be moments when talking to each other can be as foreign as each of us speaking different languages...but we will get through it. We have seen each other so broken...tears and snot running down our faces... curled up in a ball and fighting to breathe... but we are standing today. And we are together.

It wasn't the Mother's Day I had hoped for...but I'm grateful for the experience. Each day I learn knew things about myself and about my marriage that continue to shape who I am. Some days it's not pretty...but then again, I have a long way to travel on this journey.

Love,

Leah

Where to start

2009-02-06T15:41:00.006-05:00

Dear Friends,

It's difficult getting started after being away from my writing for so long. I have so much to update you on...so many events to share..and yet, trying to figure out where to begin is extremely overwhelming.

I guess I should start by giving you an update on my wrist. As you already know, I had surgery on January 20th which went well. My doctors were able to reset my wrist and support it with a permanent metal plate and 11 screws. The bandages and stitches were removed this past Friday and I have now graduated to a Velcro wrist brace. After 3 different casts over a period of nearly a month and surgery, I am finally on the mend.

Although the surgery went well, I did have some complications with regard to the pain block which was administered prior to surgery. Truthfully, the pain from surgery was incidental to the pain I felt from the block. It's funny (or maybe not) that the sole purpose of having a pain block was to help alleviate any discomfort I experienced from surgery. That was certainly not the case.

As a result of the complication, I had a lot of bruising, swelling, and considerable pain down my arm, sides, back, and neck. The block even affected my good arm. Apparently, I am one of a very small percentage of individuals who experience any kind of complications. Of course, I should have known that! My track record has proven to be just the case with regard to many instances in my life as of late.

I am the one percent or less....and that fact is depressing.

Needless to say, I was in pretty rough shape for a week.

But, as time heals all wounds...I have started feeling much better these last several days.

It's been difficult to not feel sorry for myself. I've often wondered why I am being so challenged in my life. It's been nearly 5 1/2 months since Christian died...I'm still so sad and hurt... Yet, I haven't been able to focus on my emotional healing these past several weeks because of the physical pain I've been dealing with since December. 26th. In fact, my recent injury has left me even more vulnerable than ever before.

Yes, I'm feeling pretty beat up these days... I've been struggling to see the glass half full...and I hate the way I feel. I had the most incredible experience of my life... 4 days and 3 hours with my son! And now, instead of revelling in the beauty of those fleeting moments, it feels as though I've been dropped in a hole...bleak, dark and alone.

I'd tell you that I need a break...but that would only be too funny given my current situation.

It's a far cry from my life a year ago.

One year ago...such a small measure of time...and, yet, so much has happened! I remember those early days of my pregnancy wistfully...I was so naive back then. Ryan and I were still in awe of the news that we were pregnant. And although I hadn't yet begun to show, Ryan was already rubbing my stomach...with the smile of a proud papa covering his face. We giggled so much those early days...every single time we caught each other's eyes, in fact. We were so happy.

Of course, Ryan and I still didn't know we were having a boy...but we knew the only name we could agree on was, Christian Dale Paige. Little did we know that God had already begun to lay his plans out for our family...for our son.

In my darkest moments, I have found comfort in knowing that Christian's life was mapped out long before I ever knew him.

On the mend...

2009-01-23T20:55:00.004-05:00

Dear Friends,

It's been a long (and painful) month, but I am happy to report that my surgery went very well on Tuesday. The bandages and stitches come off next week and I'll be able to wear a removable brace until I am fully healed. I am so excited to be able to use my hand...at last!

I can't tell you how much I'm looking forward to brushing my hair! Strange as it sounds, I haven't been able to give my hair a good brushing in nearly a month. Every little task has been a struggle to accomplish...made especially more difficult because I broke my dominant hand.

It's incomprehensible to imagine how much we take our mobility for granted...until it is restricted for whatever reason. I can only say that I am thrilled to be on the mend!

Now that I can put pressure on my fingers, I am excited to be able to post more regularly.

Thank you for your prayers and well wishes!

Love,

Leah

A brief note...

2009-01-19T19:00:00.004-05:00

Dear Friends,

It's been such a long time since my last post and I've missed all you very much.

Tomorrow, I am going to have surgery on my wrist which, I'll admit, makes me a little nervous. I am going to have a metal plate permanently inserted in my left wrist to help stabilize the bones that were broken in December. Apparently, the fracture isn't healing as it should and needs to be additionally supported by the plate. The good news is that once we get through tomorrow and a few weeks of recovery, my wrist should be almost 100 percent...and I'll be back to share more stories of my beloved son, Christian.

For now, I must say that I Love You all for continuing to travel on this journey of faith, love, and healing with me and my family. It means the world to me that you are all a part of helping to preserve the precious memories I have of my little boy.

Hopefully, I will be able to manage a little better after tomorrow...it's been difficult and awkward having the use of only my right hand...especially considering, that I am left handed! I tire easily which is why I must keep this post short...I hope you understand.

With Love,

Leah

Grief...

2009-01-06T19:49:00.005-05:00

Leah and I have been so blessed. I believe we have come to a cross road in our grieving. The choice to let our grief for our son steer us into a downward spiral or manage our grief and use it in a positive manner. Many of you have shown us how our grief for our son has helped you. Whether it was with your own grief or someone you knew. The constant flow of comments and well wishes are overwhelming and we are so thankful that you continue to keep us in your prayers.

We are on the mend. I know we will never heal, but really don't want too. I feel the pain and accept it...almost like a badge of honor for my son. He has forever changed me...for the better.

God bless,

Ryan

Our Wisconsin Vacation

2009-01-04T08:58:00.008-05:00

Christmas Mountain

A day of tubing promised to be great fun...

Ryan zipped down the mountain head first...

Leah went down a little more conservatively...

Bumpers cars at the bottom of the run

A natural in the snow...

Down...but not out!

2009-01-03T19:10:00.002-05:00

Hey everyone, we are back from vacation. It was a white Christmas for us at a cozy Wisconsin cabin. It was just what the doctor ordered until Leah broke her left wrist tube sledding on Christmas Mountain.

Here's the story: Dressed in ski pants, ski jacket, and cowboy boots Leah made it to the top of the slope eyeballing the coarse. Tongue out and studying the fastest path down the mountain, She leaped onto the rubber tube expecting to soar down the mountain. When the unexpected happened. Leah bounced off the tube falling forward, hearing a loud crack and feeling tremendous pain. Her tube slid down the hill without her. She was calm...I think in shock...made it down the slope on another tube and walked over to me as white as her jacket. "I think I broke my wrist " She said. I rolled her glove back and sure enough, it was broken. She was such a trooper singing Christmas songs on the way to the hospital trying to keep our friends 5 yr old little girl from getting upset. She is now in a cast and will not be able to write in the blog for about 4 weeks. I will try to fill her shoes until she is better. There is so much to share and I will do my best.

Love and God bless,

Ryan

Turning the Page...

2008-12-03T15:02:00.005-05:00

Dear Friends,

I've been wanting to write this post for some time now...but, as I mentioned previously, the words have not come as easily as they once did. I feel as though my writing has become stagnant over these last several weeks with my constant reflections on heartache and despair.

It's almost as though I'm manic! I bounce between feeling great to feeling down right awful. I can't tell you how many times I've caught myself laughing hysterically over something silly or funny only to find myself crying pitifully in the next instant. It's frustrating!! There have been many days where I've truly felt like I've lost my mind! I'm constantly trying to convince myself that what I am feeling is normal and healthy.

At any rate, I guess I needed a break. I've needed to figure out how to function and be a part of a world that continues to move forward without me. I go through the motions each day...brush my teeth, make my bed...live my life...but my actions are mechanical. And emotionally, I've checked out. I wish time would stop only for little while and allow to me grieve over the loss of my son. Then, I would be okay... I wouldn't feel like I've been left behind. I get so panicked when I think about all the "catching up" I need to do. Ahh...my life sucks right now. These are lonely times for me. Hours tick by seemingly at the blink of an eye. There are days when I don't move...I don't do anything. And then I feel guilty because I've wasted the day. It's a vicious circle that I constantly move in... so many different emotions I experience on any given day. And I am tired.

But you've heard all this before...I keep saying the same things over and over again. And I suppose, I feel like there is nothing more to my story that I could offer you...nothing positive that you could take away from my experience. It's partly the reason why my posts have been slow in coming. I hate sounding like a broken record. I'm sad..you get it. That should be the end of it right? I wish it was that simple.

Thankfully, I have an amazing husband who has big shoulders that I can cry on! He's been great! He makes me laugh. He tells me I'm pretty...even when I know I look like hell. He has an unlimited supply of hugs and seems to always know when I need one. He's been a blessing to me. My heart just swells with love when I see him tinkering in Christian's garden. You have to understand, Ryan is a "man's man"...he's the proverbial bull in a China shop! But in Christian's garden, he is so careful. His gestures are so tender and loving...like little hugs for his boy...as he tends to the plants which have become rooted in this special place...It's a joy to see. I watch him from the living room window...not wanting to intrude on these quiet times he shares with his son. I know Ryan needs his time too.

The good news is that last month, we finally started seeing a grief counselor. I've learned so much in such a short period of time. Our doctor has given tools to help us deal with the grief process. No medication...just lots of positive dialog. At first, I was apprehensive about going to see her. I thought, for sure, she would tell me I'm crazy or, at the very least, depressed. But that wasn't the case at all. In fact, I'm learning that everything I've been going through is normal and healthy. Grieving is a 3 year process. I never knew that! I've been unrealistic about my own expectations... and I'm learning to be patient with myself.

Most importantly, seeing a grief counselor has helped my marriage tremendously. The doctor has a way of pulling out information...or better yet...interpreting information that Ryan and I both share so we can better understand where each other is coming from. It's a bumpy road... but we are managing. Good days...bad days...it's all part of the journey toward healing.

My son's beautiful life has been temporarily overshadowed by this grieving process. I knew it would be hard to deal with his death...but I never imagined this life that I'm living now. I don't know what I expected...I guess, I thought I would be more prepared because I knew Christian was going to die. I underestimated how much he would impact my life. I was so naive! But I am getting better. And, one day, my posts will only be happy recollections of the amazing time I shared with my son. I'll get there...I promise!

I still have more to share...but I think I'm going to give it a rest for tonight. You have lots of rambling to digest in one sitting... but I'm hoping that, at least, I don't sound like a broken record anymore. Baby steps... I've said it before... You've been so patient with me. I love you all! Thank you...thank you...thank you for not giving up on me. Thank you for your continued prayers!

Love,

Leah

Tis the Season...

2008-12-01T10:26:00.005-05:00

Dear Friends,

I'm sorry I'm a day late on my promised post. Yesterday, Ryan and I spent the day decorating our home for the Christmas holidays. This has always been one of our favorite times of the year with the both of us eagerly awaiting the holiday season! Each year, Ryan and I make a big production of putting on our Santa caps, turning up the Christmas music, and unpacking boxes of decorations, ornaments and lights. It's a day of "holiday preparations" complete with eggnog and home baked cookies. I think this year we probably over indulged in the sweets, though..as we both went to bed with stomach aches!

As soon as Ryan got home from the fire station yesterday morning, we headed off to find the perfect Christmas tree! And, although, our trek only took us as far as the Home Depot parking lot, we carefully picked through the selection of fresh cut trees to find the perfect one. Ryan was such a good sport...patiently indulging my requests to pick up and twirl seemingly dozens of trees so that we could be sure of selecting one with no bald spots! My poor husband is usually covered in sap and pine needles by the time we are confident that we have the right tree! It's a big event for us every year and loads of fun! It's funny to watch people stare at us as we break out in spontaneous "Charlie Brown" dancing (you know what I'm talking about) to the Christmas music blaring over the speaker system... We love Christmas!

Even our dogs, Maccloud and Roxie, eagerly anticipate the coming holiday! As soon as I hang their stockings on the fireplace mantel, they maintain a steady vigil...constantly sniffing and nudging each stocking for treats and toys. We always get a chuckle when Ryan and I come home after being gone for a while...only to find Christmas presents removed from under the tree and laying around the living room. Although, the presents are never opened, curiosity and excitement seem to get the best of our dogs at times... Just like children I've always said!

At any rate, like every year in the past, this year was a buzz with activity... I blanketed table tops with garland and candles... Ryan hung lights...and we decorated our little tree...fussing over every little detail.

I wasn't sure how I would handle the events of the day. Most certainly, I thought I would fore go any kind of celebration this year, especially since Christian died only a short time ago. But, it is because of my son that Ryan and I have maintained the traditions we've so thoughtfully crafted over the years. Christian would have loved Christmas time!

There were several moments throughout the day when my thoughts wandered to my son...Tears filled my eyes as I thought about how he would have loved all the twinkling lights on the tree. By now, my son would have been able to focus a little more clearly and would, probably, have wondered what all the activity was about.. I can picture his little head wobbly and unsteady as he gazed up at his mom and dad... These pictures are so clear in my mind... It's hard to believe... still...that he is gone.

Ryan says that as long as we have vivid memories of Christian...he will always live on in our hearts...and he will always have a presence in our lives. I know he is in heaven and I know he is well, but the selfish part of me wishes that I could hold him again...even if only for a moment. I hardly let myself wish for these things anymore because the emptiness I feel is so overwhelming. The sting of loss so great is still fresh on my heart...and I will never forget my son. When he died, part of me died too. But, at least I have my memories...

This year, our Christmas tree over looks Christian's garden. Instead of my son snuggled in my arms this season, I must find comfort in knowing that he is in a better place. I'll admit, it's not always easy to do. On most days, I struggle with my emotions...always ready to give into the despair that has gripped my heart. Of course, my son and his precious memory always rescues me from my sad thoughts. I cling to the knowledge that I will see my son again one day...I just never thought my life would turn out this way. I miss him so much. I know my son is watching over us... and laughing over our silly antics of the day. And I'm glad for that.

Love,

Leah

A quick note

2008-11-27T11:24:00.003-05:00

Dear Friends,

I'm sorry that it's been quite some time since my last post. I wanted to drop you a note to let you know we are still here.

These past few weeks have gone by in such a blur of activity. I have much to share with you but I am finding the words are harder to write. I am working on a new post which I will have up and running by Sunday... lots to update you on these past few weeks.

For now, I wanted to let you all know I miss you and I am hoping you have a wonderful Thanksgiving Day. I have MUCH to be thankful for on this day (and every day). My son , Christian, was a life time of blessings and I give thanks to God for the miracle of his birth and his life.

See you on Sunday,

Love,

Leah

Tiny little steps...

2008-11-06T14:58:00.006-05:00

Dear Friends,

First, let me start by saying thank you for all the supportive comments and well wishes for my family and my birthday. It is absolutely amazing that you have become my life line these past weeks....especially in my darkest moments. I don't know any of you and yet I can count on you as if you were childhood friends for compassion and support. I am truly grateful.

After my last post, I decided to attend my first SHARE support group meeting here in Naples. I think I was at the point where I felt if I didn't start letting people get close enough to help me, I would soon self destruct with my own feelings of hopelessness and grief. Of course, Ryan and I scheduled time with a grief counselor at the end of the month, but I felt some sort of intervention was probably wise before then. I've been in pretty bad shape lately.

SHARE is a nationally based support organization for parents dealing with early pregnancy and infant loss. I'd been hesitant to seek out any personal contact with this group mainly because I was nervous about sitting in a room with other parents who have lost children. I haven't handled Christian's death very well and to hear others share their own stories of pain and loss...well, I just didn't think I could handle it. It breaks my heart when I read personal stories of loss from families who have reached out to me here on the Internet. I am always left emotionally crushed and crying a puddle of tears. I couldn't imagine looking at someone face to face and hearing their story. I was completely fearful of falling apart in front of people I didn't know. Thankfully though, I pushed through my fears and doubts and went to the meeting.

Because Ryan and I hadn't spoken to each other in days, I decided to go alone. Although I was sad at the time, in hindsight, I'm glad I went by myself. It allowed me to speak freely about my grief and get fresh perspective on what I'd been feeling these past weeks. Ryan has been working overtime trying to "fix" me... He wants to protect me and help heal my broken heart...but I haven't allowed him interfere with my own grieving. I guess that's why he "tinkers" so much... he likes to fix things - objects that are broken... and it helps him with his own feelings of loss. But I'm not an object...and the way I feel changes so radically on a day to day basis. I believe, in some ways, it makes him sad that he can't fix me too. I've tried sharing with him that I have to go through this process... I MUST go through this process...but I know he hates seeing me so sad.

At any rate, it's created this huge silent space between us... filled with emotion but no words... It's hard not being able to speak openly with your best friend and it makes me sad to think we had arrived at this place despite our efforts to be supportive of each other.

Before I met with the group, I felt as though I was going crazy! I felt "mental" and wondered if, perhaps, I needed to rethink medication for depression. I know that sounds terrible but being emotionally lost really does tend to play on every weakness and every doubt we possess. And I really have felt that I've lost my way.

But at the meeting, as I listened to other mothers speak about their children, I learned I am not unique in my journey with grief and loss. Women were talking about issues I've been too afraid to speak about...too afraid to share with people out of fear of being judged. I learned I'm not going crazy after all. And most importantly, I learned that what I'm feeling is normal. Prior to Monday evening, I never thought I would ever know the feeling of what normal is again. Of course, this is my new normal..but it feels good to know I'm going to be okay.

Initially, I struggled with finding my voice as I began sharing my story...Christian's story... with the group. I cried openly as I shared how much I missed my son. All the hurt poured out of my heart as I said out loud and brokenly, "My son died 10 weeks ago." I shared my feelings of helplessness as Christian lay dying in my arms. And I shared the emptiness I feel when I close my eyes at night. Everyone understood exactly how I felt. It was good to share. Strangely, the experience felt much differently than when I share my feelings openly on the Internet. When I'm writing, my thoughts never get verbalized out loud. There is something very healing when you give your feelings a voice.

We talked for about 2 hours before the meeting ended. And afterwards, I was emotionally drained... but in a good way. I felt as though a huge burden had been lifted from my chest.

Unfortunately, I could not express my relief to Ryan when I got home. I slept in Christian's room again and prayed that God would help me find the words to heal the silence which had been driving me and my husband apart.

The next morning, however, Ryan made it easy for me. He really is a wonderful man and I am so blessed to be married to him! He came into the room with a cup of coffee and a shy smile...it was such a small but tender gesture. His little peace offering made way for me to reach out and meet him at least half way. He made breakfast for me and we made small talk with each other...trying to ease the awkwardness we both felt...but not feeling completely comfortable.

Shortly after we ate, I headed out for a day of pampering for my birthday. I received a gift certificate for a day at the spa and so I indulged myself with a massage and facial. After the emotional release the evening before...the pampering I received at the spa was icing on the proverbial cake... I was complete mush when I finally headed home!

It was late in the afternoon before I actually saw Ryan again. We headed off to Home Depot to pick up some items I needed to complete some home projects around the house... and as we headed into the store, Ryan stopped in the middle of the parking lot and pulled me into his arms. All he said was, "I've missed you". We stayed like that...hugging each other close for several minutes completely oblivious to traffic moving around us. I'm sure we were a sight standing in the middle of the Home Depot parking lot holding on to each other tightly!!

I can tell you the ice finally melted between us. Weird as it sounds, it felt like I was home again. We went about our shopping as if we had never skipped a beat. By the time we left the store, we were laughing and teasing each other like we always do.

We made my birthday dinner together and I opened cards and gifts. One particular envelope was simply addressed, "Mom". I figured it was a card from my dogs as I receive one from them for every occasion. But, as I opened the card, I read the words, "For My Mother"...it was a card Ryan got me from Christian. I can't tell you how beautiful the words were that I read...just absolutely precious to me. I closed my eyes imagining my son telling me the words I know I will never hear from him. And although there were tears on my cheeks and the too familiar pain in my heart...I was happy.

My friends, it was a good day.

I wasn't brave enough to take the first step toward healing my relationship with my husband...but thankfully, he took the first step for me.

I did finally seek out a support group for help with my pain... and it was good.

We are moving forward...tiny little steps ...but we are going forward. Thank you my friends for helping me and my family along the way.

Love,

Leah

Oceans Apart

2008-11-03T15:22:00.002-05:00

Dear Friends,

Tomorrow is my birthday. Ryan and I haven't spoken to each other since Saturday... we are oceans apart because of things said and left unsaid since Christian's death. We are the best of friends and have been through a lot together. We giggled like children when we found out we were pregnant. We cried tears of joy the moment our son was born and we wept bitterly in each other's arms as our child took his last breath.

We've been through so much... How can we come this far and not be able to talk to each other? There are so many things I don't understand.

I know everyone grieves differently... I've heard it a thousand times already. How can anyone prepare for loss so great? Our son died. My voice falters and my eyes fill up with tears when I say those words out loud. But must my relationship suffer because my grief is different than Ryan's?

I can't tell you what is wrong. I honestly don't know. And I don't know how to fix it.

I know many of you have been praying for me and my family. God hears our prayers. I pray for healing...my heart is broken.

My wish for tomorrow is for Ryan and I to speak like the friends we used to be...can still be. Pray with me my friends...

Love,

Leah

Thinking of you...a letter from your Dad

2008-11-02T12:36:00.003-05:00

Dear Christian,

I've been thinking about you a lot lately...more so than normal. I'm a tinkerer...one that tinkers. I wonder if you would have been one too. Our garage (aka...man cave) is perfect for tinkering from welding, woodworking, engine rebuilding, to just putting air in a bike tire. If it can be broken or built we can do it in our MAN CAVE.

Son, I think of you and I working on your first bird house up to your first hot rod. So many things I can imagine doing with you. I miss you son...

Yesterday I was looking for your star with my telescope and it was to far for me to see. So I started to think. I might not be able to see you with my eyes open or touch you with my reach, but I can close my eyes and see you in my memories and touch you with my faith, this gives me peace.

Our physical features are not what have made us different, it's the gift that God gave us...the gift of everlasting life and the faith that it will be there when we are ready to join him.

Son, I know we will meet again and in the mean time I will keep you in my thoughts and speak to you with my heart.

Love,

Dad

Twinkle, Twinkle Little Star.....

2008-10-29T16:50:00.009-04:00

Dear Friends,

The words to that song have new meaning for me...

Friends of ours named a star after our son, Christian, and had it registered with the Stellar Registry! The weight of this wonderful gift hit me hard this morning as I stood outside just before sunrise... The stars shown so brightly as they lit up the sky.

On the certificate reads the words:

Time has taken me from you

Although not very far.

Know that I'll be watching you

Through sunshine and the brightest star.

Maybe one of them is my little Christian watching over me and his daddy...letting us know that he is well. It makes my heart feel good to believe that anyway.

Love,

Leah

Getting Help

2008-10-25T13:29:00.013-04:00

Dear Friends,

Last week, Ryan attended a Critical Incident Stress Management workshop at the fire station which taught firefighters how to recognize individuals who have difficulties dealing with stressful situations associated with their jobs. Issues like post traumatic stress disorders and dealing with death were among some of the subjects discussed.

Of course, Ryan thought of me and our situation as he learned about many of the signs and symptoms of someone struggling with coping issues.

During one of his classroom breaks, Ryan phoned me to let me know that, perhaps, we needed to seek help in dealing with our own grief over Christian's death. I'm not sure why, but I was mad at him as he rattled off the laundry list of symptoms he'd just learned about. I kept insisting that his class didn't apply to me because our situation was different. Christian was our son and I had a right to feel terrible. I had a right to feel depressed.

I was so defensive during our conversation and I could hear his frustration building as his loud sighs permeated through my rantings of denial and pain. And, although the tension was mounting between the two of us, Ryan pressed on telling me about the instructor in the class and how he thought she might be the person to help us with our pain...my pain. It was at about this time when I completely shut down and stubbornly tuned him out out... I didn't want to hear it. I didn't want to hear that I needed help. And it completely crushed me when I realized that my husband was worried about my own emotional well being. I felt like a failure because of my inability to cope with the loss of my son.

After we hung up...I paced around the house screaming out my frustration. I yelled and cried out loud...wishing I could purge the hurt and pain that has occupied so much of my life these past several weeks.

MY SON DIED. I've been to Hell and back these past several months with endless hours of worry, sadness, anxiety..and feelings of loss. Ryan and I have been on an extreme roller coaster ride for the past year. So much sadness and unbelievable joy in such a short period of time. Not to mention that, physically, my body is still adjusting back to normal after 9 months of pregnancy. I am a mess and I have a huge emotional battle scar on my heart.

As I vented my anger out loud and alone in my house, I fell to my knees started crying. I cried like I'd never done before. I released every bottled up emotion I'd been hanging on to over the past several weeks. I let it all out and I let the tears fall until I had nothing left... my spirit was truly shattered at that moment...I was broken.

And then, I started praying. I prayed to God for help. I prayed for strength. I prayed for my marriage. I prayed for other families who are experiencing the same tragedy and I prayed for healing for all of us.

It was some time before I actually picked myself up off the floor. Ryan was right, we needed help... I need help.

My friends, I am not proud of the way I've dealt with Christian's death. People tell me that I am strong and I am an inspiration. But the truth is I am not strong at all. I cry privately...afraid to show my tears because I don't want people feeling sorry for me. I cry in the shower when Ryan is at home so he won't look at me with sad eyes...although I know he knows. I've been hiding out at home...afraid to run into people who don't know about Christian.

For some reason, I feel as though I deserve the way I'm feeling. Ryan and I went down this path with our eyes wide open. We knew our son would not survive Trisomy 18. We chose life even though we knew it would ultimately lead to pain and heartache. Even now, I would still make the same decisions over and over again...because my son was worth it. He was worth every tear I've shed since his death. I love him so much! I just didn't know that it would be so hard to pick up the pieces of my life and put them back together again after he died.

No, I have not dealt with this very well at all.

Yes, I do need help. I've been too stubborn to admit it. I realize this now.

I only want to honor my son now that he is gone. I want him to be proud of his mother and that means I need to help myself. I need to take this experience, hold it close to my heart and become stronger because of it. It doesn't mean I'm moving on...but, it does mean I have to move forward. I must for my own sake and well being. Christian would want that.

When Ryan came home from class I began asking him questions about the doctor and told him I wanted to see her. I think he was surprised by my willingness to hear more about her. But I also know he was glad that I was receptive to getting help.

So here it is, my friends. I am taking it one step at a time... no more denial... I am seeking out help because I certainly don't have all the answers. This is too big for me to handle on my own. And so we move on to another chapter in our story...

Love,

Leah

A brief Hiatus...

2008-10-23T09:15:00.002-04:00

Dear Friends,

This week has been a nightmare for me. I wanted you to know I'm still here and have much to share with you, but I will not be able to sit down and write at length until possibly Saturday or Sunday.

Our computer system crashed in our business and I am having to re-create every single transaction we've done since February. I've been eyeball deep in paperwork and still have a mountain to go.

Truthfully, it's been a good diversion from obsessing over my grief... but I wish it was a better diversion than panic over our business!

Although I am blurry eyed from looking at numbers all week, I am hopeful to be back on track by Friday...

Thank you so much for your emails and notes... I am truly grateful that you are still thinking of me and my family and continue to life us up in prayer. I have received some AMAZING words of comfort, poems, and friendship from all of you. You keep me going when there are days I don't feel strong enough to move forward on my own. Thank you.

Each day, we experience the miracle of prayer and truly feel God's presence in our lives. Thank you again...

Love,

Leah

I Saw God Today....

2008-10-18T08:01:00.017-04:00

Dear Friends,

Last night, my husband and I decided to take our boat out for an evening cruise for a little "us" time because we haven't had that in such a long, long time. After Christian died, we talked about getting away, just the two of us, but never really made any plans to do so. We've been trying to get back to normal...back to the same old routines...but, what we've really been doing is spinning in circles. Not moving forward...just suspended between celebrating Christian's life and mourning his death.

For me, I've been hiding out... I've been staying at home afraid to get out for fear that I would have to explain, yet again, that Christian died. Saying those words over and over again does not get easier, trust me. What's worse is the look of pity I receive afterwards...the awkward moments...and finally, a rushed attempt to scatter...to be anywhere but near me.

I understand that people aren't trying to be mean or rude. It's a natural tendency to feel uncomfortable in such a situation, but it adds to my feeling of isolation. Every day I try to venture out to do the most menial tasks... shopping, banking, just regular everyday errands and, on most days, I come home in tears.

People always want to talk about new babies...and they have a million questions. With faces lit up, they ask, "How old is your baby?", "Boy or Girl?", "What is their name"... and gush all sorts of congratulatory comments! And then I tell them the news and it's as if my child just turned into an alien.... no more smiles...no more questions... no more engaging conversation... no more looking you in the eye.

What happened?? My beautiful and precious boy is still beautiful and precious... he is still a joy... I have amazing stories I can share...and I was Blessed to have him.

Awkward silence... and then I skulk away like I've done something wrong.

I know people feel bad for me and family... They are hurting too... It's a terrible thing to lose a child. So I've been hiding out... avoiding the stares... avoiding the silence.

But, yesterday, my dear husband suggested we go on an evening cruise...and it sounded GREAT...just what we needed.

I'd had another one of those moments I previously described after picking up Christian's baby rattle which I had engraved... Fresh air away from everyone sounded perfect and I needed the pick me up.

And so, off we went. As we were cruising along the coastline toward downtown, I reclined back in my seat just marveling how gorgeous the day was. I smiled up at the sky taking in big gulps of fresh air. Overhead, little fluffy clouds dotted the brightest and bluest sky. I couldn't help thinking about Christian... and how I wished he was there with us enjoying the moment... and then it happened.

I sensed his presence so close to me I could almost feel him...it was that tangible. I sat up and looked around... and opened my eyes and ears. I mean, truly opened my eyes and ears to everything going on around me.

On the radio, George Strait's song, I saw God Today, was playing. And at that moment, I heard the words to the verse, "...the flashin' lights, the honkin' horns all seemed to fade away in the shadow of that hospital at 5:08, I saw God today....". At the same time, I noticed a little rainbow hovering in the foamy spray of water which splashed beside our boat as we cruised downtown.

I hollered at Ryan and we just stared at each with goofy grins on our faces... completely immersed in that moment. We sang along with the song...out loud and off key...laughing and smiling away. We felt God around us and we felt Christian with us...

My friends, Christian was born August 18, 2008.... at 5:08 p.m.

I am constantly amazed by how God chooses to continually reveal himself to us... Throughout our entire journey with our son, we have felt His presence. He's held us up when we were at our lowest points when Christian was alive...and now he lets us know he has not abandoned us after Christian's death.

It was a great moment...

BUT...for reasons I don't fully understand yet (obviously), God has a way of bringing home the point that life has it ups and downs... and it's okay.

Not that I was thinking about it too much last night. But, on our way home from dinner...we were the lone boat on the water engulfed in complete darkness...hugging the coastline in very, very rough water. I felt like Ryan and I were Gilligan and The Skipper out on the 3 hour tour... I had my feet wedged in between the seat cushions trying to keep from bouncing out of the boat... a white knuckled death grip on my seat and glaring at Ryan for purposefully trying to hit every tidal wave that ventured near our boat. (Not that he was trying to do so...but I still had to blame him, nonetheless!)

I guess what I'm trying to say... is that our outing as perfect as it was in the beginning...still had it's bumps in the road... I think that's what God has been trying to tell me... There is beauty in everything.... I just have to notice it...BUT, there is always a balance... it makes us appreciate the good that much more.

I don't believe in coincidences...

Last night was amazing...

"I saw God Today"...

Love,

Leah

Mercy Me Homesick Video

2008-10-14T19:24:00.002-04:00

Dear Friends,

Someone sent this video to me anonymously and I wanted to share it with you because it's beautiful. You will have to pause my playlist at the bottom of my blog in order to hear it correctly. May this video touch your heart as much as it has mine.

Thank you and much love to the person who sent it to me.

Love, Leah

Mercy Me Homesick with lyrics

2008-10-14T19:13:00.001-04:00

The Talk....

2008-10-10T19:47:00.013-04:00

Dear Friends,

I know it's been a few days since my last post... I've been processing a lot of frustration and despair...even anger on occasion. On most days, I feel better when I share my feelings through my writing because I have received so much love and support from all of you...but it seems I've just run out of words to write these past several days.

There is a very lonely side to grief that I am learning about these past few weeks. I feel there are days when no one can possibly understand what I'm feeling and I can find no comfort from anyone around me. Even sharing my feelings with Ryan has become difficult to do. I find myself having to check my words just in case I sound bitter or sorry for myself. I don't want to have stress in my marriage so I've kept these feelings to myself. This is not an emotional place I thought I would ever experience. Certainly, I thought it would get easier with time.

Time heals all things, I know... Perhaps, it will even heal my broken heart someday.

But I think time can be so cruel too...

It's been 7 weeks since my son passed away... a lot of time has gone by to help me process my sadness, but to me, this time has been a drop in the bucket. My feelings of loss are just as intense as the day Christian died. Only now, I find myself crying alone... trying to hide the fact that I'm not coping with Christian's death very well.

It's been 7 weeks since my son passed away...and I can't smell him on the clothing he wore at the hospital anymore... Each day I sit beside his bassinet and touch his things... I smell his caps, booties, onesies... everything. His scent has faded away. I am clinging to anything which will keep my son close to me... and time has not been my friend through this process. My son is gone and I feel so alone.

It's almost as if I've been two different people these past weeks. I've been trying to be upbeat and positive..."moving on with life" so to speak. But, truthfully, it's a cover. I think it's what people expect from me... or, at the very least, I think it makes people more comfortable to be around me. And so that's who I am...publicly. I've learned to be some semblance of the person I was before because I think it makes everyone feel better....everyone except for me, that is.

Inside, I feel as though I am withering away. I've been through a lot this past year... My struggles didn't start with Christian's birth and death... it has been a series of events over several months... and everything is weighing on my shoulders.

My feelings are like an open wound that has started to fester with the infection of bitterness... Unbelievable pain. And I can't stand the way I feel anymore.

Eventually, I had to sit down with Ryan and have "the talk" just as I am now having "the talk" with all of you... Finding the right words to begin with was not easy... I stumbled several times before the words would flow and before I could share the parts of my heart which I have been closing off to the world.

It's seems odd that I would have to remind my husband of what we'd been through all these months, but actually, I had to remind him of what I'D been through... he's been holding my hand from the very beginning...but even he couldn't understand the depth of my injury...not until I shared it with him...

I started reminding him of our journey through infertility...the unsuccessful treatments...the stressful days of overwhelming odds... I reminded him that we didn't have children because of ME... a botched medical diagnostic surgery 4 years ago left me with so much scar tissue that it was a physical impossibility for me to conceive naturally.

When we finally sought the help of another fertility specialist, his candor set the expectations of conceiving children through In Vitro with very low statistical odds... but we forged ahead...we wanted to have children. For me, the pressure of knowing we had an uphill battle was stress immeasurable. I was an emotional mess during that time. So much pressure!

Then, we got pregnant...and we did great... we had twins growing inside me. A reprieve from the emotional turmoil of the previous months and years...and then one of our twins died. Was it something that I did or didn't do... Sadness...disappointment...hurt... all these things I felt. I still feel them to this day. I wonder if my stressful nature helped to contribute to the loss of Christian's twin.

But we had Christian...and I put EVERYTHING I had into my baby boy... I did everything I knew to do to make sure our son would be healthy... but, in April, when we learned Christian was sick with Trisomy 18, life changed in the most dramatic way.

I guess we found our faith at that point... we relied on luck previously...but had no comfort when we became "unlucky". Faith helped us to make the difficult decision to carry our son to full term. I say it was a difficult decision because we didn't have a lot of support early on from our specialists. Carrying a terminally sick baby without much help from your team of doctors is a hard road to travel by yourself. So much uncertainty... Most of what we learned about Trisomy 18, we learned through the Internet and through other families who have experienced the same situation.

And, although our faith has helped to buffer our feelings of despair and surround us with people of amazing courage and strength, I was still hounded by the realization that my child would soon die from a terrible disease.

I carried my child just below my heart for nearly half of my pregnancy knowing that he was terminally sick and there was nothing Ryan and I could do to save him. He would die no matter what.

During those days of my pregnancy, I thought only of my son. I embraced every single day with joy because my son was growing inside me and I didn't want to let him down. Even though my heart was breaking... I wanted to be strong for Christian. I ate well, stayed active, read to him, sang to him, and rubbed my belly as if to reassure him that his mommy was happily awaiting his arrival into this world... even though it meant that saying hello to my son, meant that I would soon be saying goodbye.

I have been through a lot. My whole family has been through a lot. Not to minimize what pain they are feeling, but I have traveled most of this journey alone. Ryan has been beside me 100 percent, but physically I have traveled this journey alone. I am more aware of that now than ever before. Emotionally and physiologically there is much work to be done on my part.

I am trying to unravel all the months of hurt, disappointment, and despair that has gripped my heart. I've put on a "brave" face and have gone on with life, somewhat... I've read books on bereavement and grief. Ryan and I built a memorial garden for Christian. We put pictures of him throughout our home. We've watched videos of him...just so we can be reminded that our son was not a figment of our imagination...that those precious few days were real.

And I've prayed. Oh how I've prayed. I've cried out to God asking him, "Why my son?", "Why us?".... And I am still waiting on the answers...

I am alone. The feeling covers me like a blanket. I don't have other children I can embrace and be thankful for... I have the ashes of my son locked away inside a little brown teddy bear that I hold close to me...wishing it were my son happily gurgling away in my arms. That's it. I have the memories of 4 days and 3 hours with my beloved little Christian. And I am terrified that those too will fade just like his smell from his precious few belongings...

So you see...I've been quiet... trying to sort through these emotions. I am grateful for the support and love...but I am sad. I'm trying not to feel sorry for myself... but, perhaps I am sorry for my self. Should I feel this way? Am I being dramatic or selfish? I don't know anymore. Life is moving on and I am digging my heels in...unable to move forward "for me" yet.

I'm trying to be strong for everyone else...but it's not working for me... I only feel further isolated.

Ryan's sister had her baby on Sunday and I couldn't visit them in the hospital. I am happy for her and her family but bitterness chokes me because I miss my son so badly. I feel terrible.

Everyone is excited about the newest addition to our family and it's as it should be. It's a joyous and exciting time for new parents. I remember vividly how I felt just a short time ago. But my son died... I am not excited. I hate the way I feel.

Good friends of ours are struggling with infertility... disappointing results and another failed attempt. I feel their pain with such intensity because Ryan and I have walked in their shoes. I hate the way I feel.

All these additional emotions compound my feelings of despair.

My friends, I am struggling. Perhaps, the road to healing often has its periods where there are high and low moments and I am just at a low point. I don't know.

I just know that I needed to share with you my journey once more...perhaps you have better insight as to how I'm feeling, what I'm feeling...and hopefully how to get better. Obviously, I don't have the answers.

With Love,

Leah

Our Comfort Cub

2008-10-01T14:02:00.010-04:00

Many people have emailed me asking about the Comfort Cub we photographed in Christian's garden. The funeral director told us about this little bear...and Ryan and I thought it would be great to have something that is a part of Christian that we could hold and cuddle. I can tell you, Ry and I hold him every single day... there is much comfort in having our little bear with us. The cub has a brass heart shaped locket in his chest which holds some of our son's ashes. The locket can also be engraved.

For Christian's remaining ashes, we put them in a marble baby block which the cub keeps vigil over... This memorial for our son keeps him near to us always....

Ups and Downs

2008-10-01T12:50:00.012-04:00

Dear friends,

It's been a few days since my last post... To say that I've been in a "funky" mood is putting it mildly. I'm not sure how I feel... mad, maybe... or just tired of feeling sad.

Whatever it is, it finally got the best of me on Monday evening... Ryan and I were watching Pete Wilson's video, Rocked to my Core, for probably the hundredth time and I just felt overwhelming sadness.

Unfortunately, I expressed my feelings with uncontrollable anger. Actually, both Ryan and I exploded and ultimately lashed out at each other... I don't think we were angry with one another...it just came out that way. I broke the remote control to the TV in several pieces and Ryan shattered a large mirror. Truthfully, I don't know which is worse...the fact that we have to deal with 7 more years of bad luck or that we now have to get up to change the channel on the TV! (Okay, maybe that's my poor attempt at humor... )

At any rate, we ended the evening not speaking to each other and eventually sleeping in different rooms. I felt terrible as I tried to make sense of what just happened in our home. And, after several hours, I finally fell asleep...with no answers and no comfort.

The next day, Ryan and I cleaned up the mess we'd made the night before...and went about business as usual. It's funny (or not), but we never talked about what happened...I guess we just figured it was one of the up and down moments so many people have told us about.

Right after Christian died, many people warned us that tragedy has a way of hurting even the strongest relationships, but Ryan and I thought we would be immune to such things. We are the best of friends and we have been through a lot together. Not to say that we are on shaky ground because that certainly is not the case...we are rock solid. But, grief does tend to make everyone act and react differently. I understand what people were trying to tell me now.

My mind has been working overtime trying to understand my feelings... and I am so emotionally tired. Perhaps it's my own fault for not finding emotional peace through all of this... I am just not ready to quit talking about my son. I'm not ready to let go. I know he's gone... I will never again be able to hold him or feel him snuggled close to me. And I am so sad.

I don't want the day to come when remembering what he felt like and what he smelled like becomes a distant memory. It's as if I am suspended in this dark place because of my fear of that happening. Perhaps only time will soften this fear and I can eventually find the peace that has eluded me so far.

For now, I have been trying to get physically healthy...hoping that getting back into shape will help to ease the sting of my broken heart. Getting back into the gym has been a good diversion... "sweat therapy" is what I call it...although my muscles feel like they are being tortured! But, like everything in my life these days, I'm sure it will get easier with time.

As for the garden, it's mostly complete. Ryan added lighting and mulched the beds... Time and TLC will have Christian's garden growing beautifully... I'm sure we'll post more pictures soon.

Take care for now,

Love,

Leah

Garden for our boy

2008-09-26T21:07:00.020-04:00

As I promised...here are some more pictures of Christian's garden.

Please don't notice that I'm standing on the very top of the ladder!

Don't try this at home...I am a trained professional...ha!

We planted Blooming Jasmine, Italian Cypress, Juniper, and Costa Rican vines...

The teddy bear is actually called a "comfort cub"... Some of Christian's ashes were placed in a heart shaped gold locket which is inside the bear's chest. It's a way for Leah and me to have a part of Christian with us always. We hug him, tell him we love him, and kiss him goodnight every evening. He even watches football with us on Sunday!

The fish...

Christian's garden faces our home... he will forever be a part of our family...

Christian, Roxie, MacCloud, and Me...

God bless

1 month ago...

2008-09-22T13:49:00.004-04:00

Dear Friends,

Today marks 1 month since Christian passed away. It's a tough day. Ryan and I have been trying to stay busy these past few weeks... mainly focusing on the garden and each other. Each day, I try to stay focused on the joy my son brought me and it truly helps. We really jammed so many good moments into the 4 days he lived on this earth... it's easy to smile when I think of him.

Ryan and I started our day by visiting Heather Donlan's studio and picking up several photographs she had taken while we were at the hospital... I will never get tired of looking at all the images of Christian. Right now, they are my lifeline... I especially love the videos... hearing his noises and watching all the little faces he made makes my day... especially when I feel sad. Moving forward has been the most difficult thing to do... but it is getting easier.

After Christian died, I thought I would die too... it certainly felt like it. Grief brings about the worst kind of pain... everything is hard...very hard! But, the pain does subside. Slowly, I am learning to breathe again and I am finding my way back to a new kind of normal.

I don't think I'll ever be the same person I was before Christian came into my life... and that's okay. I'm still trying to figure things out... still trying to figure out how I move forward in a positive way.. and I'll get there.. I just need more time.

For now, Ryan and I stay busy...we completed the pergola in Christian's garden today! Now that we have the foundation set (fountain, pergola, and stones)...we'll be able to start planting! So far, we've decided on Blooming Jasmine for the pergola but we have yet to decide on all the other plants! Hopefully, we'll be able to make decisions this week and have everything planted by the weekend!

We should have better pictures of the progress in the next few days or so.

Thank you again for walking with us in our journey with Christian. I really can't express how much it means to me and Ryan that you have continued lift our family up in prayer. I have read the most beautiful and uplifting emails and letters from so many of you and they have helped me to deal with the loss of my son. At my lowest moments, you have lifted my spirits and I am so grateful!

I have had a tough time personally writing to many of you who have taken the time to write, send us gifts and even hand made cards... Please know, I'm just having a hard time finding the right words to thank you! I am overwhelmed by your generosity and feel that anything I say is inadequate! Just know that I love you for caring about my family!

Love,

Leah

A work in progess...

2008-09-20T20:47:00.006-04:00

Hey everyone,

We have been getting alot of inquiries about the garden. So here are a few pictures on the progress. I picked out the fish...I think Christian would have liked to go fishing with his dad. I would have loved going fishing with him...I miss my boy.

A place to reflect....

Trying to even out the farmers tan...

Got a great deal on the cypress. Thanks Naples Lumber! I cut and sanded it, Leah stained it. She's a great helper.

We plan on growing Jasmin on the pergola for some shade.

We hope to have it done by the end of next week. We'll keep the pictures coming.

God bless,

Ryan

Celebrating Christian's Life...

2008-09-18T07:57:00.040-04:00

Christian had many visitors at the hospital....

So many people came throughout the week! Ryan and I were thrilled to show off our little boy to so many friends and family! Christian was held, and kissed and fussed over by everyone! I know our little boy felt so much love during his time here on earth!

Fire Trucks came by...

Aunts and cousins came by...

Ryan's Battalion Chief came by..,,

Our Pastor and family friends came by....

Dear friends came by...

Young friends came by.....

More Aunts and Uncles

His Cousin...

His Uncle....

Handsome Hank....
a firefighter "uncle"

More "uncles" from the fire station....

Chicago friends...

And even more friends....

Christian's fan club...

More friends...

Grandma Mina...

Christian's "uncles" from the fire station....

Happy One Month Birthday, Son...

2008-09-18T07:57:00.010-04:00

Christian Dale Paige

"Our Beautiful Boy"

Born Aug. 18, 2008

Only a few minutes old...

Gone too soon...

I miss you, Son....

Love, Mom

Blessings...

2008-09-17T19:33:00.008-04:00

Dear Friends,

Tomorrow marks what would have been Christian's 1 month birthday. It's hard to believe a month has already passed since I gave birth to my son.

It's hard to put into words how I feel... I suppose I should start by telling you that I am so Thankful that God blessed Ryan and me with our son, Christian! Our little boy really was more than we could have ever hoped for.

After years of trying to have children and even after our attempts to adopt a little girl from China...Ryan and I started thinking perhaps we weren't meant to have kids of our own. My heart hurts as I write these words because I remember how desperately we wanted to fill our home with many children and how hopeless we felt because we had none.

But we didn't give up ... we kept trying ... until finally, with the help of our fertility specialist we conceived Christian. Actually, initially, we were pregnant with twins!

When we lost Christian's twin at 8.5 weeks, all our hopes and dreams for a family rested on the birth of our son... our precious Christian. In April, when we learned Christian had Trisomy 18, an always fatal chromosomal defect, we knew he would never be well here on Earth. There was nothing we could do to help our son and we knew he would die from T18. All our hopes and dreams were shattered and we were devastated. But we loved our son so much...we still couldn't wait to meet him!

It would have been so easy to be angry and turn away from God because of our circumstances. Especially considering that Ryan and I were what I call, "convenient Christians"... we only prayed when we were in trouble... and it went something like, "Lord, if you help get me out of this mess, I promise I'll be a better person." We never had a relationship with God... and we never realized how one sided our meager relationship was... we always asked him for help, but we never gave anything back.

When Ryan and I learned about Christian, we RAN to God... we needed him to help us get through the most difficult time of our lives. This time though, we placed all our trust and faith in Him and we knew He would take care of us. In the midst of the worst news we could possibly receive and after all that we had gone through to conceive Christian, our faith was tested far beyond anything Ryan and I were prepared for.

But we remained faithful... we prayed everyday for God to let us have a birthday with our son. We embraced every day we had Christian in our lives with utter joy and anticipation. Each day I carried him in my womb was a wonderful experience... and I celebrated every ultrasound...kick, hiccup...and even gas pain (although, I don't think Ryan was as thrilled about the gas)... The bottom line is that we truly felt BLESSED by the experience.

God chose us to be Christian's parents and we knew our son would be nothing short of a miracle!

After months of praying for a birthday and remaining faithful to God's plans for our son, we were blessed with a birthday and our son was absolutely beautiful! He had a strong cry the moment he was born and he showed such personality during the 4 days and 3 hours he lived.

I guess what I'm trying to say, is that God never turned his back on us. He gave us a birthday...in fact, he gave us more than we asked for...we got 4 incredible days to be with our son. God has also put people in our lives who have helped us through our grieving process... so many of you have touched our lives with stories of loss and hope... your constant prayers for our family have truly lifted our spirits when they have been at their lowest.

Yes, I am struggling with my grief... I'm sad.. .and I miss my boy so much... But I also want you to know that I am so happy to have had the opportunity to know my son. I loved holding him and telling him that I love him... I kissed him a thousand times before he died and I held him as he took his last breath. I will always treasure this experience for the rest of my life.

Love,

Leah

Christian's Garden

2008-09-15T17:02:00.006-04:00

Dear Friends,

Ryan started working on Christian's memorial garden this weekend. His sunburned skin and the blisters on his hands convey how this has truly been a labor of love from father to son.

Christian's garden has a beautiful water fountain and stone bench so that we can have a place to reflect and remember all the precious moments we shared with our little boy.

It's a work in progress as we still have plants to plant and a pergola to build for shade...but it's really coming along. Ry and I have really enjoyed searching for things to put in Christian's little garden. We were deprived of the opportunity to create a special nursery for our baby boy... so, in a way, this is the nursery we never had... One kind nurse made castings of Christian's hands which we are having bronzed for his special place. Already, it feels so peaceful...

I sat there yesterday after church and felt my son close to me as I stared into the fountain. I know I will spend countless hours there daydreaming of my beautiful boy. I'm sure Christian is looking down from heaven...eyes twinkling and approving his daddy's work.

Love,

Leah

The Mail Bag...

2008-09-11T16:39:00.006-04:00

Dear Friends,

I feel like I'm teetering on a seesaw... I felt pretty good about my earlier post and had some energy to do a little work around my home... Not bad considering that most days I don't feel good about anything and have little energy to even get dressed...

And then the mail came... we received more cards and letters which have been such a great source of comfort for Ryan and me..., a water bill, the funeral home statement, ...and Christian's birth certificate.

It's IMPOSSIBLE to feel good about anything when it feels like you're getting punched in the face every day. ... I received my son's death certificate before I even received his birth certificate. We received his medical card from our insurance company yesterday, letters addressed to Christian from the hospital...the hospital he DIED at... and I've even received a bill for him. My son was 4 days old and he has a bill in his name!

No grief counselor can offer words that ease the sting of getting on with life after my son's death. How much must I endure before I completely snap? I'm angry and I'm upset.

Is this the way to healing? Every book I've read about dealing with grief talks about the emotional side of loss... but few address the business of getting back to normal... I checked. There are no chapters regarding mail call or what to say when your not-so-observant neighbor asks when he can come visit your new baby (That happened as I was walking back from the mailbox today).

It sure feels like I'm in the "Anger" stage of grief. Not a good place to be.

Stumbling along...

2008-09-09T19:56:00.014-04:00

Dear Friends,

It's difficult to put into words what I am feeling today. I guess I must start by telling each of you that I love and appreciate you so much for each email and comment I've received over the past few days. I've spent time reading and re-reading each note... taking in everything that you've written and feeling a renewed strength to work through my pain.

Please forgive me for not responding to each of you personally... Just know that you have touched me deeply with your kindness. We are weaving an intricate bond of friendship together...and it has a far reaching and much greater impact than I ever imagined possible. Thank you so much for your words of comfort and your friendship!

It wasn't easy for me to admit that I've been struggling to keep it together since Christian's death... especially in such a public forum like the Internet. But I am glad I did...the support I've gotten in return has been immeasurable. Thank you so much for the many prayers and emails... You are all amazing people and great inspiration to me!

My steps toward healing have faltered, but then again, it's a tough road I am traveling on. My son died 3 weeks ago... and I know it's okay to be sad.

I thought this journey would be over once Christian passed away. But in truth, it's only just begun. The true test of my faith and character really began on the day Christian died. And there is much I still have to learn.

As parents, Ryan and I made the most important decision that we could make for our child...and that was choosing his LIFE over any other option available to us once we learned Christian had Trisomy 18. Some would say we chose the hard path...but, there really was no question in our minds that it was the right thing to do. And we were rewarded greatly by our decision...God blessed us with a beautiful son.

When Christian was born, we didn't see an imperfect little boy... we saw a Miracle. Words can't describe how wonderful the feeling is when Ryan and I look at pictures or videos of our son and we see each other in Christian's features. We created his life together...there is no sweeter feeling or stronger bond than that. Through our tiny little boy, God has taught Ryan and I more about faith, hope, and unconditional love than we ever thought possible.

I have much to be thankful for. And even though I have stumbled along this path toward healing, I am still moving forward.

With Love,

Leah

Dark Days

2008-09-08T21:07:00.003-04:00

Dear Friends,

I'm not doing very well... I am sinking into a black hole and I don't know how to help myself.

I've been beating myself up for days now... thinking there must have been something that I could have done to help my son as he lay dying in my arms... I've been tormented by that day. I remember his last moments so clearly...the little whimpers he made...just before he closed his eyes forever. My son died in my arms...and I've relived the moment each day, a thousand times a day ever since. And, I don't know what to do to help ease my suffering.

I lay awake for hours going over the events of that Friday...struggling to cope with the decisions Ryan and I made. We signed the Do Not Resuscitate on Thursday because we didn't want Christian to be put on a ventilator if he stopped breathing. We only considered his quality of life and I didn't want to interfere with God's plans for my child. But I never realized how difficult our decision would be... I thought Christian would die peacefully in his sleep. Never had I imagined that he would struggle for several hours before it finally happened. I know that Trisomy 18 can't be fixed or healed...I know it's fatal...but I feel so much anguish at my helplessness...

I remember begging the nurses to help him...knowing there was nothing that could be done to save his life. I know without a doubt that any one of the nurses who surrounded me that day would have moved mountains to help us if it were possible to do so. But still, I am Christian's mother...why couldn't I have done something to save him... I will never forgive myself.

I had no idea how difficult this road would be when Ryan and I decided to carry Christian to term. Not that I would do anything differently... Even though I only had a few days with my son, I will cherish those times for the rest of my life... But, I miss him so much. My heart is aching... and there is no relief.

How do I pick up the pieces of my life so that I can function normally again?? How can I move past the events of Friday?

Please tell me something that might help me... I feel so terrible these days.

Leah

6 Years Together

2008-09-08T10:43:00.008-04:00

Dear Friends,

Ryan and I celebrated 6 years of marriage on Saturday... It wasn't the kind of celebration one would expect for an anniversary or special occasion, but, it was still a special day for us.

There were lots of hugs, spontaneous dancing to various songs playing on the radio, moments of silliness and laughter... and tears as we talked about our son, Christian. We marvel at how our boy really was the best of the both of us... His features were a combination of the Asian in me and Italian in Ryan... He was such a beautiful little boy!

Ryan and I thought our home would be filled with tons of children by now. Certainly, we never expected to be grieving over the loss of our only son... It's been so hard for the both of us.

But, we have tried to be strong for each other. Ryan is never too far away when I have my moments and need comforting. And I've tried my hardest to be there for him. Although he puts on a brave front, I know he's needed me too. I see it in his eyes...red rimmed from crying privately. I know he misses his little boy. Sometimes, I put my arms around him and I feel his shoulders slump toward me...the weight of his own pain bearing down on me. It is in those moments when I am reminded that I am not alone in this journey...and I can't be selfish in my own despair.

Ryan and I have always had a special relationship... We are the very best of friends... always have been from the moment we first met. I know our closeness will carry us through our grief.

We've talked about getting away and finding the joy in our lives again...but it's still too soon. The flowers from Christian's memorial are still in full bloom in baskets and vases around my home... reminding me that our son was here only a short time ago... I miss my boy. But I know that one day, Ryan and I will see our son again... What a sweet and glorious reunion that will be!

And so it is...that our anniversary was a special day... filled with sweet memories of our son and of each other as we've grown in our marriage throughout the years.

Love,

Leah

2008-09-05T15:13:00.004-04:00

Dear Friends,

Tomorrow is my 6th year wedding anniversary... It's also the original due date my doctor gave me for Christian's debut into this world. How differently things have turned out.

The reminder popped up on the screen of my blackberry today...not as my wedding anniversary, but as Christian's birthday. Another reminder... another ding on my heart.

I really am trying to get better emotionally, but everything reminds me of what I don't have...and that is my son. I feel terrible today.

A Special Prayer Request

2008-09-03T23:07:00.005-04:00

A special family needs our prayers right now... An angel in Texas, Kenzie Stanfield, was admitted into the hospital earlier this evening for preterm labor at 26 weeks with her daughter Faith Clare. She has been a prayer WARRIOR for me and my family and has been faithful in our walk with Christian from the moment she first learned of us. She lost her son, Maddox, in January to Trisomy 18...the same condition that took the life of my own son. Please pray for Kenzie and her precious little Faith Clare. I know He listens and He will wrap his loving arms around this beautiful family.

Love in Him,

Leah

Empty Arms...

2008-09-01T23:42:00.014-04:00

Dear Friends,

It's been 4 days since Christian's memorial and I am still trying to come to terms with the loss of my precious boy. Ryan and I have spent countless hours looking at photographs and videos taken of our son...so thankful for preserving what few moments we had with him. Our tears mingle together as we talk about our boy. His life was such a paradox...so many hopes and dreams shattered, but yet, he was an answer to many prayers...A birthday we never thought we'd have. Again, such pain and joy... two emotions which will forever be linked together.

There are no words of comfort which will help to ease our broken hearts. Not today, anyway. I miss my son so much.

Just before morning, I went into Christian's room and curled up with one of his onesies... I held it close to me taking in the smell of his lingering baby scent and wishing that I was holding him again in my arms. I closed my eyes and rocked back and forth as I remembered how he felt snuggled against my chest...the weight of his body so slight as it lay against me. I remembered the little noises he made and the softness of his skin as it touched mine. I will always cherish these precious moments with my son. Too few memories... but, they are all I have.

At times, the emptiness I feel completely overwhelms me.

I remind myself constantly that I must walk and not run through this journey...that it will take time to heal. But it is a lonely process. I am emotionally and physically tired... drained of every emotion except pain and grief...they are my constant companions.

It's such a contrast to how unbelievably happy Ryan and I were just a short time ago. The birth of our son was an amazing experience...A lifetime of joy felt in the 4 days and 3 hours our son lived on this earth. Ryan and I share our favorite memories of him often... we love how his hair looked after we took off his hat...wild and messy and just plain adorable. We loved how milk used to accumulate in the corner of his mouth after a feeding...and we loved how he used to peak at us with one eye open...seemingly shy and curious at the same time. We loved how he used to point his little index finger... a trademark he adopted early on... even while he was still in my belly. There are so many little things that we will never forget! He had such a large personality for one so tiny! I can only smile as I think of him.

I know that losing my son has permanently left a scar on my heart...but I it's a scar I will gladly bear... I had my son for 4 glorious days... God blessed me and my husband with an amazing little boy... and to feel this pain is a reminder of the best days of my life.

I don't know what God's plans are for my life as I move forward through this journey...but I do know he does have a plan. Already I feel changed by this experience... another paradox... fragile and tender hearted as I think about my son.. and stronger as I absorb how Christian's life has impacted me forever.

To my dear friends who have remained faithful in this journey with me...thank you so much for your continued prayers and support for my family. There are simply no words which can adequately express how grateful we are for each one of you. Ryan and I feel your love and appreciate how you've embraced us...especially my son. Thank you for caring and keeping vigil over our broken hearts. We Love You All.......

Love,

Leah

2008-08-29T17:51:00.011-04:00

Dear Friends,

Tomorrow is Christian's Celebration of Life memorial... I've been praying for strength to help me get through the second most difficult day of my life... But, I'll admit, I'm having a tough time... a really tough time.

As I think about what I'd like to share about my son, one thing continues to resonate in my mind...and that is the legacy he's left behind in the hearts of many. Ryan and I are so completely humbled and thankful by the generosity of so many of you who have shared your hearts, your love, and your prayers for healing with our family.

When we learned Christian was diagnosed as having Trisomy 18 in early April, we were devastated. Everything we read and knew about the chromosomal defect was dismal. It wasn't something we would be able to fix through the miracles of medicine and we knew that our son would not have a long life here on Earth. But the thing that struck me hard was the medical phrase, "Incompatible with Life". It's harsh... completely void of any compassion for the families who are impacted by this terrible defect.

One thing Ryan and I were not willing to accept was that Christian's life would be a foregone conclusion... We weren't willing to accept that, just because T18 was considered incompatible with life, our son would not have a full and meaningful life. It's the main reason I started sharing our story with you... I've had little time to share my son with the world...but I wanted his life to have an impact...I wanted him to matter.

My son, my 4lbs., 14 oz. bundle of spirit and joy certainly HAS made an impact on so many people. He's made a difference to people he's never even met. My heart warms when I receive notes from complete strangers telling me they are more tolerant of their own children or they hug their kids more often... just because they've read our story. People have written notes letting us know their plans to volunteer for the Trisomy 18 organization or March of Dimes... people have even donated money in Christian's honor to the Now I Lay Me Down To Sleep Foundation. All these loving gestures from people my son has touched. I can go on and on with so many amazing stories of how people have been impacted in various ways. My son matters!

I am so proud and honored to be Christian's mom! And I am honored to call you my friends and family.

So, as I wind down this evening and begin thinking about what tomorrow holds... I will pray for strength and courage to get through the day and I pray the Lord provides me with the right words to honor my son.

Love,

Leah

My Perspective on, "True Friends"

2008-08-27T17:50:00.003-04:00

I've told Ryan that I think the guys who came over yesterday were an answer to a prayer.

When I woke up yesterday morning, I prayed hard for God to help us get our lives back on track. I told him we needed help... Keep in mind, Ryan and I are not the type of people to ask for help...not that there aren't people who haven't offered. We get calls ALL the time from our friends wanting to help us out.. but Ry and I have just always managed by ourselves.

Anyway, I'd prayed hard yesterday morning... I shared with God that we were in over our heads...and a little help wouldn't be so bad.

At 9:00 a.m., our doorbell rang and 7 guys from the fire department were standing in the driveway waiting to help Ryan put our garage back together after the big move and Tropical Storm Faye.

Little did I know that when I asked for help, God would send it in the form of several handsome and capable men from the North Naples Fire District!

What's even more amazing is that shortly after the first crew arrived, more firefighters showed up in groups of 2, 3, and 4 at a time...about 20 firefighters total... ALL looking to help out in anyway they could.

Answered prayers... God does that often... we just have to ask...

The best part about yesterday wasn't that all the guys accomplished so much in such a short period of time (although we are so grateful!!)... but they stayed and hung out at the house for awhile telling funny stories and being the "brothers" that a firefighter family can rely on in times of trouble.

I heard Ryan's gut busting, belly laughter above everyone else in the group and I smiled... thinking it sounded like music to my ears. We need laughter these days...

When I thanked one of the guys for helping us out, he told me that they were all Christian's "uncles" and they were happy to do it. Christian's "uncles"... what a great sentiment. I hope Christian was looking down from the heavens and marveling how much he was loved.

Leah

Bumps in the Road

2008-08-27T16:55:00.003-04:00

Today is tough... I ventured out of the house today to run some errands, but I had a hard time focusing on the simplest of tasks. Tears were my constant companion as I drove from place to place trying to accomplish what I'd set out to do. I keep telling myself it's okay to feel this way...my son died only 4 days ago. 4 DAYS... not long ago...but yet, it's an eternity with empty arms. Oh, how I miss my little boy so much.

It's said that, "Time heals all wounds.", but I wonder if that applies to me too. How does one heal from a loss so great? It doesn't seem possible...but then, again, it's only been 4 days.

I woke up in the middle of the night...something I've done every night since coming home from the hospital... the weight of despair bearing down on my chest...so unbearable. I kept rocking back and forth crying out for my son. And the silence was deafening.

I thought today would be the day I finally shared stories of Christian's amazing birth...but it will have to wait another day. Perhaps tomorrow I'll find the words...

Love,

Leah

True friends...

2008-08-26T15:45:00.009-04:00

True friends are not hard to find...they are there just because...

You see, our boy was scheduled to be born on the 22nd...try telling that to Christian. Our little guy couldn't wait. A storm was coming and it wasn't Faye it was Christian. He was born a week early...the night before Tropical Storm Faye was due to hit Naples...there was no time to prepare for the storm. We had just moved our ornamental metal business back into the garage...what a mess! I had 1hr to throw all the lawn furniture, planters, trash cans, and miscellaneous items in the garage too...more of a mess.

Between spending precious time with my son and now planning his memorial service... There has been no time to get our lives back together...until Christian's many "uncles" from North Naples Fire Rescue came to our rescue. Our lawn was mowed on Friday before we got home...and today, in what would have taken me all week to complete, our garage was boxed, packed, and stowed in 45 minutes...ready to be a functional garage again. God bless true friends.

Thanks so much to my brothers at North Naples Fire Rescue,

Ryan

Quiet Reflection

2008-08-26T13:28:00.009-04:00

Today, I spent some time in Christian's room quietly reflecting on how much my world has changed in such a short period of time. As I looked into his bassinet, I felt loss so heavy that, at times, it was difficult to breathe. I miss my son... my precious, precious boy who gave me so much joy during the few days we were blessed to be with him.

As I looked around his room, I was comforted by all the things that belonged to him... and I whispered softly telling him I love him. I truly feel his presence with me and it's a bittersweet feeling... pain and joy... hardly two emotions that should go hand in hand....but in my world, they will forever be linked.

Fierce pride welled up inside me as I went through his little box of belongings... clothes he wore at the hospital, little stuffed animals that kept vigil in his crib, his "binkie", and yes...even the plastic medical I.D. bracelet he wore...letting the world know that I was his mom.... All these things belonged to Christian... Everything smelled like him... What joy to remember what he smelled like as I snuggled him close to me.

It's hard to describe...but having these precious few belongings of Christian's meant that he truly had weight in this world... He was already accumulating "stuff"... My little boy was HERE... He had a birthday and he overcame monumental odds just by being being born. I am so proud of him! He was a little fighter... so much determination!

Ryan and I say he was so strong for us... he wanted to be with us just as much as we wanted to be with him. I could definitely see it in his eyes on the day he died. There was so much clarity and understanding in the way he stared at us... I can only believe it was God working through him to help us in that dark moment.

My heart is broken and my tears seem never to dry on my cheeks... but I still rejoice because I had an amazing little boy and I am a mom! Regardless of how many tears I shed for the loss of my son, I will always feel gratitude for having been allowed to meet him and spend time with him... I had a miracle!

As I closed the door to his room... I felt a renewed strength to do the things which are most difficult these days... I worked on his memorial... I wrote his obituary... these things are difficult to comprehend... but it's my life these days... and the trade off was so worth it. I had my son.

It's hard.... I'm hurting... but I'll deal with it ... I know. With God's grace and amazing friends... I'll heal...we will all heal.

Love,

Leah

My Dear Angel Christian,

2008-08-25T23:35:00.003-04:00

Grandma Mina loves you soooooo!

I wanted to spoil and play with you and tell you stories about your daddy.
I was blessed to be there when you were born and share your mommy and daddy's Joy!! My heart is bleeding for them now they are without you.

I know you are in good 'God' hands and I will take care of your parents but know their faith, courage and love are so strong it makes me proud and humbled.

God blessed us with so much more than we expected.....4 days and 3 hours!!
And such a handsome boy, too.

You have touched so many lives for such a little guy. We will miss you dearly.

Forever with Christ.

Loving you always, Grandma Mina

A Picture Is Worth A Thousand Words....

2008-08-25T11:57:00.015-04:00

We just left the funeral home... We dressed Christian in his little outfit for his memorial service and spent some wonderful time kissing him and telling him that we love him. He looks so peaceful...like he's slumbering away unhindered by the many tubes and bandages that used to cover his tiny little body. I sat there admiring his beautiful features and I thanked God for our many, many blessings. I thanked Him for allowing Ryan and I to spend such great quality time with our son on Thursday and I asked Him for grace to deal with our loss and strength to cope with our broken hearts. I am truly shattered. But I am so joyful for the precious moments I've shared with my son.

If I had this journey to travel all over again, I would gladly make the same decisions...even amidst all the heartache and emptiness I am feeling. I love my son...I've loved every second I got to spend with him...beginning from the first moment I knew he was growing inside my belly.

I want to shout out loud and tell the world my son wasn't "Incompatible with Life"... He was, He is, and He will forever be...."Full of LIFE"... His life mattered.

I am posting several pictures of our boy...because I want to share with you all the little things we love about him. The words will come later....but I want you to know my son...now.

These were pictures taken by Heather Donlan of Heather Donlan Photography...our angel who is affiliated with Now I Lay Me Down To Sleep. God Bless her and her work... I hope they bring you as much joy as they do us.

I love you all,

Love, Leah

2008-08-25T09:17:00.000-04:00

A Celebration of Christian's Life

2008-08-24T20:16:00.007-04:00

Dear Friends,

Thank you all so much for the many prayers and words of comfort we have received these past several days. I have so much to share with you regarding Christian's birthday, the precious few days we were able to share with him, and the final day of his life. We have amazing memories and stories and I am anxious to share with you the life of my beautiful boy.

And, although my heart is broken and my spirit is shattered...for now, I must focus on what we, as parents, must do for our beloved son.

We invite you to celebrate the life of Christian Dale Paige on Saturday, August 30th, at 12:00 p.m. (Eastern Time)

A memorial service will be held at the Fuller Funeral Home located at:

Fuller Funeral Home

1625 Pine Ridge Road

Naples, Florida 34109

In lieu of flowers, Ryan and I ask that donations be made to The Now I Lay Me Down to Sleep Foundation (NILMDTS). As I mentioned in an earlier post, this organization helps families like mine preserve the memories of our beloved children through photography. The entire network of affiliated photographers graciously donate their time and talents to our families and offer their services at no cost.

"The Now I Lay Me Down To Sleep Foundation is there for parents and families to help aid them in their Healing, bring Hope to their future, and Honor to their child. It is through rememberance that a family can begin to heal."

You can make donations online at http://www.nilmdts.com/ or mail them to:

The Now I Lay Me Down To Sleep Foundation

7800 S. Elati Street, #111

Littleton, CO., 80120

Please reference Christian Dale Paige on your check or online donation.

If you would like to send a card or letter , please send it to:

Ryan and Leah Paige

830 93rd Avenue North

Naples, FL 34108

We treasure every note, card, and letter we receive.

Most importantly, please continue to lift up prayers for our family- for strength, comfort, peace and understanding in the difficult days ahead.

2008-08-23T23:13:00.000-04:00

This is to Christian’s Mom & Dad….

Please first know that as a health care provider I have never done this in my 30 PLUS years of practice NOR have I ever been touched in the way you 3 have touched me today………..YOU all are more of an inspiration then you can EVER imagine………Leah, YOUR smile has burned a whole in my heart……..Ryan your compassion and the way you looked at your son’s MOM will forever be a part of my soul………….Christian, YOU are amazing…….YOUR cry immediately at birth was MUSIC to my ears and your mom yelled out….”that’s my son”………”he’s crying”………………YOU ARE SO LOVED……..

I am Michelle the Respiratory Therapist who had the honor of being a part of your son’s birthday…….HE IS BEAUTIFUL………….
At times our jobs become very routine…………..TODAY YOUR family reminded me once again why we do what we do…………..

Tonight I pray for all of you and your extended families…………Christian is an amazing little boy……….I know God has a BIG plan for him…..and HE Gave Christian an extraordinary set of parents to help him accomplish his job here on earth……………

God Bless you all,
Michelle

Precious Pictures

2008-08-23T22:57:00.010-04:00

Christian is with Jesus

2008-08-23T14:31:00.004-04:00

Our son has passed on to be with Jesus. On Friday morning as we were planning on taking him home and he had an episode where his mind couldn't tell his body to breath. He is such a fighter that he had around 8 episodes throughout the day as Leah and I held him. At 8:00 pm our son went to sleep and Jesus came down and carried is soul to heaven. We were so blessed with the time that we had with him. He was a perfect little man.

Our little man has touched so many hearts and has taught us all how powerful love can be and how time is such a precious gift. We will cherish every minute spent with him until we go ourselves to be with the Lord.

Thank you everyone for your prayers, visits, and gifts. We truly couldn't have walked this path without your help. God has given us strength and comfort knowing Christian will be whole again in his arms.

We are going to have a memorial service for Christian and we will post the time and place on our next post.

Thank you all again and God bless,

Ryan and Leah

Thank you Lord!!!

2008-08-20T09:11:00.005-04:00

Our prayers have be answered...our boy is alive and we have been given more than an hour with him...as a matter of fact it's been three days and it looks like we will be able to take him home.

We can't thank you all enough for the prayers and well wishes. We have before us the miracle of prayer. Thank you Lord for listening to our prayers. We have truly been blessed.

Please excuse our delay in posts...the hospital internet won't let us access our blog editor. We plan on being home on Thrusday or Friday.

God bless, Love Ryan, Leah, and Christian

Beautiful Baby Update....

2008-08-18T21:54:00.002-04:00

Ryan & Leah would like to announce the birthday of Christian Dale Paige. He was born on August 18, 2008, weighing 4 lbs. 14 oz., and is 18 inches long.

Family and friends are encouraged to stop by The Birthing Center at Naples Community Hospital North.

Please check back for pictures and an update on their progress.

Fey Update...

2008-08-18T08:12:00.002-04:00

Just a quick update on Tropical Storm Fay and the Paiges...We are all prepared and safe. The storm is heading for us here in Naples, but doesn't look like anything except a rain maker, and we definitely need the rain. Thanks for the concerns. It's off to the next ultra sound. so wish us luck.

Love,

Ryan & Leah

Now I Lay Me Down To Sleep

2008-08-15T21:36:00.005-04:00

I forgot to mention...yesterday, when I was at the hospital, I met with a lovely nurse who headed the bereavement services for the hospital where Christian will be born. She told me of a variety of things they do to help ease the pain of parents whose hearts suffer from having a child who is sick, is dying, or has died. One of the organizations she plugged me into was an organization called, Now I Lay Me Down To Sleep. It's an organization dedicated to preserving the memory of our beloved children through photography. All of the services and photographs (including a disk of the pictures) are donated by photographers in communities all over the country.

The reason I wanted to share this information is because there have been many families who have contacted me and have shared heartbreaking stories similar to what Ryan and I are experiencing. The website is: http://www.nilmdts.com/ and it has wonderful information for other parents wanting to capture their precious and fleeting moments with their children like Ry and I are planning to do.

Through our journey with Christian, we have learned that we all here to help each other. You have reached out to me and helped my family tremendously through prayer and friendship. I hope to be able to reach out to others too and pay your kindness forward.

Love to all,

Leah

A little Scare

2008-08-15T20:17:00.004-04:00

Hi Everyone,

I guess it wouldn't be a "normal" day in the Paige household without drama! Yesterday, I went to the hospital for a routine stress test on Christian's heart and we didn't do so well. Apparently, Christian's heart rate showed some deccelaration which at this late stage is not a good sign. After 3.5 hours in the hospital and, yet, another ultrasound we were told to come back this morning and repeat the test.

We were told to also bring a packed bag and prepare to be induced today! You can imagine how scared and unprepared we were when the nurses told us that! I was panicked...there is still much to do here at home before our originally scheduled delivery date of August 22nd! The thought of being induced a full week early was certainly not anything Ryan and I ever considered! Even though our whole pregnancy has been one unplanned event after another!

I woke up this morning absolutely certain that our stress test result would be much better today! I prayed hard for God to give us a little more time to get ready for Christian's birthday.

On the way to the hospital, we stopped and grabbed breakfast of a strawberry banana smoothie, blueberry muffin, AND a cheese danish to make sure my little boy was bouncing off the walls for his stress test! And, sure enough, he did just that! Another reprieve!!

We are still on target to for next Friday! Woo Hoo!

2008-08-13T18:15:00.002-04:00

Dear Friends,

We met with my OB/GYN yesterday and finally scheduled an induction for August 22nd...next Friday at 7:00 a.m. Due to the fact that Christian's growth has been so slight, our doctor's felt that the inducing labor would give us the best chance to have a birthday with Christian and to spend a little time with him. We're going to be giving birth at The Birth Place here in Naples.

To tell you the truth, I was so nervous when we scheduled the date. This is the day I've been praying for and dreading at the same time. I am so excited to meet my son FINALLY! To be able to hold Christian in my arms with his father beside me is a dream I've been wishing for for so long. We are going to be parents! But how much time will we have with him, I don't know. That's the part I dread. Will I be strong enough to handle what is to come? For now, I shove those fears in the back of my mind and try to focus on the joy we will experience when we meet him on Friday.

There is so much that we are trying to accomplish in this short period of time. I haven't written about it at all these past few months, but Ryan and I have been very busy trying to shut our family business down so that we can devote all our time to Christian when he comes. It's been a struggle for us because the Florida heat hinders my ability to help Ryan as much as I'd like. And he is not the type of person to ask for help. Also, as many of you already know, Ryan is also a full time firefigher. When he's not working 24 hours at the fire station, he is trying to finish projects for our clients and move our business from our warehouse back to our shop at home. I don't know how he does it...He's is truly amazing. I can tell the stress is finally wearing on him though...he looks so tired these days. But he never complains...he just tells me that he can't wait to spend time with our son.

I don't know how we've managed these past several months... we have tried to be strong for each other in the most difficult of situations. And we have done it.

Thank you all for your prayers and the many, many emails we are receiving each day. I read them all before I go to bed and feel so much better about what each new day brings. You are all so amazing. I wish I wasn't so tired each night... I would write you all and tell you how much I love you for caring for me and my family. I hope you will understand if I haven't written to you personally. Believe me when I say that I truly appreciate your letters and I thank God every day for bringing each of you into our lives.

Love,

Leah

It's hard to imagine...

2008-08-10T12:27:00.006-04:00

Well it's hard to imagine, but shopping for our son should be easy, baby blue with some kind of fire truck design or football on it and we are golden. It isn't that easy. You see, our boy might not make it home from the hospital. So, will he even have time to wear it, lay in it, or play with it. Do we get a bassinet or a crib? Do we get a car seat or a stroller? Do we get an inexpensive one or one with all the bells and whistles? Do we get it and just keep the receipt? These are the questions we have to ask our selves. It's not fair! I want to spoil my boy. I don't care how much it costs, but then reality hits me.

It's hard to imagine life without Christian...

Love, Ryan

2008-08-06T13:27:00.002-04:00

Hi Everyone,

I just got back from our latest ultrasound appointment and, it appears, we've had a bit of a reprieve. Our son has grown to 4 lbs, 10 oz and 17 inches long since his last ultrasound! Although, we learned that he now measures 3.5 weeks behind his gestational age, he does continue to show some growth. At this point, we'll take anything we can get that is positive news! The doctor told us that as long as he continue to show progression, then we can still stay the course and assume he will be born alive for his birthday. Ryan and I just can't wait to meet him! Moving forward, we will start monitoring him and his measurements weekly. If, at any point, he has no growth, then the doctors want to deliver him early.

This is the first day in a long, long time that I've actually felt like my old self and started to feel a little more optimistic about our situation.

The roller coaster ride we've been on since the beginning of July has been very difficult to deal with...but, if my son continues to fight, then I will get off my pity party and be better about staying positive too!

2008-07-19T14:03:00.006-04:00

I know I promised an update several days ago and I've tried so hard to give you one. I've started so many pages but have not been able to finish without melting into tears. Even now as I am typing tears are rolling down my face... It's so difficult to do this. In a few weeks my son will be born and I will know joy and also pain unlike anything I've ever experienced in my life before.

So many of you have written the most beautiful emails to us letting us know you are there and we are so grateful. Each email and comment we read help to lift our spirits knowing we have so many people who care about us. Thank you so much for your messages of hope and love. And thank you so much for your prayers. Today, I am asking that you pray for me...my courage and my strength are fading and all I can think about is how terrified I am to face what is before me.

Last month was tough to get through...we've had so much bad news. I guess at some point, I think I've just become numb to any kind of feeling...

We started the beginning of July pretty optimistically. The last 2 doctors appointments in June went very smoothly...no issues and Christian continued to progress normally.

In fact, because our son seemed to be doing so well, Ryan and I decided to schedule another appointment with the pediatric cardiologist to discuss possible surgical options for Christian's heart. Our initial appointment with him was cancelled by our regular doctor shortly after finding out our baby had Trisomy 18. Incompatible with Life. It's the proverbial brick wall we slammed in to back in April. In light of Christian's development though, we decided not to let T18 deter us from seeking out a second opinion regarding Christian's heart and we requested another meeting with the cardiologist. Certainly, we understand there is no getting around the medical diagnosis of T18. It's fatal...we get that. BUT, as parents, we wanted to be able to explore every possible option available to us to help Christian. We wanted to see if there could be anything done to help prolong his life. Our appointment was scheduled for July 7th.

The first thing we had done was a detailed echo cardiogram on Christian's heart to verify the original diagnosis of Tetrology of Fallot. What we learned is that Christian's heart has a Ventricular Septal Defect (VSD) instead. Apparently, this is a common type of defect in babies who have genetic defects. More importantly, we were told that the hole was very large and would probably not close by the time he was born. Currently, Christian's heart is functioning at about 85 percent capacity. It was hard to fight back the tears as the doctor went through the results of the EKG but we were still hopeful that he would tell us Christian's heart could be fixed with surgery. Unfortunately, that was not the case. After a brief moment, he turned from the ultrasound monitor and told us that because of the size of the hole, Christian was not a candidate for surgery. He would not survive it.

I just stared at him completely dumbfounded by what he said. I didn't understand it at all. This doctor was one of the leading pediatric cardiologists in the country and he just told Ryan and me that he couldn't help us. It hurt to breathe and my face felt flush from my efforts to hold back the flood of tears which threatened to come at any moment. With as much composure as I could muster, I asked the doctor how long Christian could survive without having surgery and he told us that it would only be a couple of weeks to a couple of months at most.

We knew that the prospect of Christian having a normal life would not be possible with T18. But the pain we felt knowing we had no options available to us to help him is almost too much to bear. Christian now has two strikes against him and he isn't even born yet. But my son is such a fighter! Even now, as I am typing away, he movements are strong in my belly. He is always letting me know that he's there and reminding me to not give up on him. I love him so much!

The following week, we had another ultrasound to check his development and to make sure that no additional problems could be seen. Already, the weight of our recent news was affecting mine and Ryan's moods. We'd been pretty down all week ....just struggling to get through the days. It's weird (or maybe not so) how being sad makes you so tired. All I wanted to do is sleep and forget about everything around me. Unfortunately, I couldn't even do that. It doesn't seem fair that my life is falling apart and the world seems to continue to function with or without me being a part of it. Our commitment to our son is the only thing that drives me to get out of bed each day. I don't want to have regrets at the end of this journey. I owe that to my son.

Anyway, I went to this latest ultrasound by myself because Ryan was scheduled to work on shift at the fire station and couldn't get the time off. It didn't bother me too much because I thought this appointment would be another routine exam. Since the previous ultrasound appointments had gone pretty well considering, I felt confident this would no different. Plus, Ryan assured me that he would pop in if the fire truck was in the area.

One thing I noticed right away is that the ultrasound images weren't as clear as the ones we were used to. Christian looked pretty cramped in my belly and it was hard to make out the images on the screen. I was told this was normal as I progressed in my third trimester. As the technician took the routine measurements, she told me that he was currently 2 weeks behind in his development. At 32 weeks he was measuring just 30 weeks. More bad news and I was alone to receive it. Not a good place to be considering I had done a poor job of handling the information the cardiologist shared with us only a week before. Fortunately for me, Ryan walked in shortly afterwards and helped to comfort me. He is so great like that. He got to spend about 10 minutes with me and Christian before being called away on another emergency call. But it helped me to collect myself enough to get through the appointment.

After the ultrasound, I had a lengthy visit with my doctor about the results of the EKG from the week before and the ultrasound we'd just completed. She spent a lot of time with me discussing our wishes for Christian and asking questions Ryan and I had not yet considered in our pregnancy. We've been so focused on Christian's birthday and all the things we wanted to do with our son that we've had very few conversations about making final preparations for him. I left the doctor's office feeling very sick.

That's the way I've been feeling for the last few weeks. Just sick to my stomach. I've asked myself a million times why this is happening to us and how will I ever get through it. Ryan and I have wanted children for so long...we've prayed about it..we've done everything we possibly could do to have our own children...and now we have to plan the funeral of the precious child we've waited to patiently for. It just doesn't seem fair.

This week I have two doctor's appointments... Aug. 6th and 8th. We'll know more about Christian's developments and our next step on Friday. I pray that the doctors will tell me he is well enough to go to term. It is so critical at this point for his lungs to be as fully developed as possible because my son's heart is having to work harder to compensate for the VSD. He just needs a fighting chance. Ryan and I are still hopeful for a birthday. I want my son to hear his mom and dad tell him how much we love him and how we couldn't wait to meet him.

My dear friends...to all of you who have taken the time to write to me and pray for us...thank you again for everything. Thank you for walking with us in our journey. To know that my son matters to each of you is most humbling and so overwhelming. We are forever grateful.

Love, Leah

Catching up...

2008-07-19T11:47:00.004-04:00

Like Ryan said, it's been awhile since our last post...and I apologize for that. I also apologize for not responding to the many emails we've received offering support and encouragement. It's not that we don't appreciate people reaching out to us... it's just that I don't know what to say. I'm sad. I can't think ....and most days I just want to crawl in my bed and hide from the world. Perhaps in doing so, maybe this hell we're living in will go away...but, unfortunately, it's not the case. I'm going through the motions of everyday living. It's tough and I'm struggling with so many emotions right now. I hope you will all understand why I've been so quiet.

As Ryan alluded to in his earlier post, we haven't been getting a lot of positive news from our doctors these past few weeks... The despair is mounting and I'm running out of things to hang my hopes on. In the past, it was very easy to be upbeat and strong...even optimistic about our situation. I guess it's always easier when you have good news to feed your energy. But now, the weight of mine and Ryan's decision to stand by our son is hitting us full force. There are simply no words to describe the pain and fear we are feeling these days. Yes, I'm scared. I'm scared to death of what is to come. I want to be strong for my son and my husband. I want so many things...but mostly, I want more time...I need more time. I'm not ready to let go.

I've read other blogs from incredible mothers who have experienced or are experiencing what I am going through and I am amazed by their strength to endure something so devastating as the loss of a child... but they are surviving! I don't know how they do it... I don't know how I'm going to cope. I admire them so much...several have reached out to me. I love you all for doing so and I'm sorry for not responding in kind... I feel like such a coward because you seem so much stronger than I am. And I'm scared... I hope you will all understand.

Today, this is all I can manage... I promise to give you an update in the next couple of days. I've been meaning to...really. But I have no words right now. A friend suggested that I write a few words to let you know I'm still here and to please not give up on us. Please pray for us... for strength, for courage, and for Christian. We love our son so very much.

Love,

Leah

Tough Times

2008-07-17T10:19:00.004-04:00

It has been awhile, but things have been moving kind of slow. It is a lot of "Let's wait until the next ultra sound." The wait and see is how we have been living. It's tough, an emotional mess. I'm trying to stay strong and focus on the every day needs and on the future, but have had my moments of deep sadness. You see, our boy is not doing well. We have some tough decisions and arrangements to make in the next few days. I'll let Leah explain in her words what the doctors have told us. She is a much better writer than I.

I just never thought I would be making funeral arrangements for my son before he was even born. My heart hurts every time I think of losing him, but I smile when I think of the joy I'll have when I can hold him, if only for a moment. We have chosen a tough road to travel by not giving up on him, but the memories are our rewards. God bless our son and everyone that is praying for him.

Good Morning Son

2008-06-26T06:58:00.002-04:00

Good Morning Son,

Mom said you were kicking like crazy this morning, but when I went to feel you you stopped. I told your mom it was my calming touch that settles you down...she giggled. You have made it past the 7th month mark. Most babies with T18 don't make it this far or they slow down their growth. You are still going strong and seem to be growing like you should...way to go champ! Your mom and I got to see you in 3D for the first time, you have her nose. I'm glad it's not mine. When you see me you'll know why. Friend's say you have my pouty lips. I'm not so sure that is a good thing, but the girls seem to think so.

Christian, I've been building a hot rod in the garage hoping you'll be able to some day help finish it. Mom thinks I'm going through some kind of midlife crises. I told her it was just a hobbie, but really it's a way for me to relax. Some day I hope to share that feeling with you.

Love you Son,

DAD

Another Day...another Doctor's visit

2008-06-19T18:54:00.017-04:00

Yesterday, I had another visit with my OB/GYN. Now that my appointments are scheduled every 2 weeks AND I have regularly scheduled ultrasounds with my "high risk" specialists, it seems I am always at the doctor's office.

I had my glucose test done yesterday which is a routine test given to all pregnant women to check blood sugar levels. Okay, I totally get that it's a necessary test... But let me tell you, it was not pleasant. Drinking an orange flavored VERY sugary drink first thing in the morning was definitely NOT my idea of the breakfast of champions...especially since I had to fast prior to the test and my stomach was empty and growling. Christian seemed to like the drink though as he was moving around in my belly like he was in a bounce house.

I made up for it, however, because as soon as I was done with my doctor's appointment, I ate a breakfast fit enough for a lumberjack... scrambled eggs, french toast, sausage, fruit, Milano cookies (okay, I snuck those in)... yeah, you get the idea...I feasted as if I hadn't eaten in days! (Pregnant ladies can do that, you know!) :o) Afterward, both Christian and I were in sync because I was definitely bouncing around too!

It was nice to visit with my doctor though because I think I finally asked some good questions. A couple of days ago I met a really great lady who contacted me after receiving an alert about blogs pertaining to "Trisomy". She has a daughter, Mallorie, who is 16 MONTHS OLD. Please stop here and really grasp this... Little Mallorie is alive at 16 months old... She is a MIRACLE!

Ryan and I consider her a true beacon of HOPE! And it's a beautiful thing! All we've read prior to meeting her are grim statistics about Trisomy 18 and heartbreaking stories of pain and loss. Seeing a picture of little Mallorie has reassured Ryan and I that we have certainly made the right decision to stick by our son. The endearing way my new friend, Connie, describes her little Mallorie fills me with so much hope and anticipation to meet my own son. I just can't wait until he is born!

Anyway, my correspondence with Connie has been so valuable because, as a survivor, she has been able to offer some insight on what we might expect should we be lucky enough to have our son with us for longer than a brief moment. Things like caring for my son and personal choices while at the hospital during the delivery are things I never allowed myself to hope for because I didn't think I would have that much time with him.

I had a brief conversation once with a parent who lost their child to T18 and afterwards I broke down and was depressed for days. Imagine carrying a child inside you who moves constantly... and having conversations about making funeral arrangements and memorial services...The sadness is so great. No hope...just dread at having to prepare for the unimaginable. It is pain unlike anything I've ever experienced. And yet this is what my future will eventually hold... BUT NOT RIGHT NOW! My son is ALIVE... and I am committed, now more than ever, to celebrating his LIFE. Ryan and I are truly living in the moment. Thank you Mallorie!

I realize more than ever that Ryan and I have a lot of work ahead of us to prepare for Christian's arrival! We're not banking on false hope... we only want to be prepared just in case we're blessed with a miracle like Mallorie. And so I started a dialog with my doctor about choices I thought would never be available to me. Maybe this doesn't make sense, but I felt like I was finally moving forward instead of spinning my wheels and waiting for things to happen to us. It feels great!

People, I'm learning this as I go and I will be the first to admit, I'm overwhelmed and CLUELESS about what is to come. Ryan and I don't have children. I don't know how to change a diaper, the fragility of babies scares the heck out of me, the smell of funky diapers and "spit up" will surely set my gag reflects on high alert, and I think I'm lactose intolerant because the smell of milk really creeps me out...But I'm okay with all of that. I just want my son. Ryan and I have been trying to have kids for years. We know what kind of parents we want to be... we "parent" our dogs who are our babies...but it's not the same. I feel at such a disadvantage because my pregnancy encompasses all the joy that a new mother should experience. But, it's also filled with despair caused by being told my son has a fatal genetic defect. It's a lot to deal with. Ry and I thought we would have a basketball team by now... we thought it would easy and it's been anything but that.

And now I have a new friend who has reached out to me with HOPE. I am forever grateful...Connie, Thank You. You are blessing and a friend!

It's been over a month...

2008-06-16T11:10:00.012-04:00

Well, it's been over a month since my last posting and I wanted to update you on the latest news about our son, Christian.

Truthfully, my writing has been slow in coming because I've had trouble putting my thoughts and feelings into words. I honestly thought writing about our situation would get much easier as time went on, but it hasn't. It is such a struggle. Each time I sit down to write an update, I read over what I've previously written and a deep sadness comes over me with the reminder that this is my reality. I've tried to erase the truth from my mind that Christian has a terminal defect and his life here on earth will be fleeting at best. I would do anything, ANYTHING to be able to keep my son here with me and my family, but I know that it's not meant to be. How I wish things could be different.

This is such an emotional journey for me. And, although my writing has allowed me to channel some of my grief into a more positive outlet by sharing our son with the world, there are days when I just feel so broken. I pray constantly for the strength to endure God's plan.

I do try to stay positive and focused on our commitment to Christian. Each day, I thank God for giving me this time with my son. I have found more joy in the little things that occur than I thought would ever be possible. Even now as a write, Christian is happily kicking away in my belly and I am so happy! His movements are a constant reminder to me that my precious son is growing and will, hopefully, be strong enough to meet his parents one day. Ryan and I look forward to that day with such joyful anticipation!

Let me go back a few weeks to share with you a few special events that have transpired to this date.

First of all, I experienced my very first "Mother's Day"! May 11th was such a special day for me. Ryan surprised me early in the morning with a Mother's Day card. I can't tell you how happy I was to get it... During the several days leading up to that Sunday, I couldn't help thinking to myself that this may very well be my first and last Mother's Day celebration. I woke up that morning feeling so sad...almost to the point of tears. Ryan also handed me a little blue and white Tiffany's box and quietly said, "Happy Mother's Day". I just stared at him with gratitude for thinking of me as a mother already even though Christian isn't born yet. It was such a sweet moment and it meant the world to me. Ryan gave me a beautiful charm...it was a lock with the initial "C" in it. It's truly a gift that I will treasure forever.

I spent many hours that day thinking about what it means to be a Mother. It's a title that has so many responsibilities attached to it and I prayed so hard for God to let me enjoy the privilege of being Christian's mom...even for just a little while, so that I could experience a few of those things with my son. To be able to feed him, bathe him, comfort him when he cries...would be experiences that I would cherish for the rest of my life.

It was a pensive day...definitely bittersweet... and I wouldn't have traded the experience for anything.

On May 14th, Ryan was deployed across the state to help fight the brush fires that were burning out of control on East coast. It was tough to see him go because Christian's next ultrasound was scheduled for the following day and he would not be there.

I was terrified of going to this appointment alone because I was sure I would get news that Christian's health was deteriorating and I didn't think I would be strong enough to handle it on my own. Fortunately, my dear friend, Jahna, came to my rescue and went with me.

We spent about 1.5 hours watching Christian through the ultrasound and were amazed by what we saw. First of all, let me say that my son was completely enamored with his feet! He kept grabbing his foot and putting it to his mouth or over his head. He was so active the entire time...twisting and turning and showing us how limber he was. It was simply adorable to watch. He also kept pointing his index finger as if to convey to us, "I'm number ONE!" We laughed so hard just watching his little antics on the monitor. I am totally in love with his personality and spunk... and I was thrilled to share the experience with Jahna.

More importantly, we learned on this day that Christian was not developing any additional problems as is common with Trisomy 18 babies. His size and weight measurements were still normal for his gestational age of 24 weeks. In fact, he measured just shy of 12" and weighed around 1.5 lbs. All, but one, of the cysts on his brain had disappeared and all of his organs seemed to be developing normally. Even his heart defect seemed better. The overriding aorta seems to not be as severe as originally thought. It's still overriding, but only very slightly.

To me, all these things combined give me so much hope that our son will be strong enough to be born. I know there are no guarantees, especially with T18, but this was the best news we could possibly hope to receive.

Although it was such a great day, it was slightly dampened by the fact that Ryan was not with me to share in the joy. Of course, I assured him afterwards that Christian was doing well and relayed everything that we learned that day.

Ryan finally returned home the following Monday a lot smellier and perhaps a little thinner despite being fed 3 square meals a day. Having our family back together and our spirits considerably lifted by our last ultrasound made for a lot of laughing and silliness in the Paige household during the following days. In fact, Ryan's mood was elevated even higher when he felt Christian give me nice karate kick in the ribs on Saturday. Our son's kicks and movements are getting stronger and much easier to feel. I can't tell you why this makes us so proud... maybe beause it shows us how strong he is getting and that's a very, very good thing.

At 26 weeks, I FINALLY went shopping for some much needed maternity clothes. I never thought I would ever be a fan of elastic waistbands...but let me tell you...they are a GODSEND! I didn't think I would be able to embrace my pregnant look in public after I found out Christian had Trisomy 18. And I honestly didn't know how I would react to people questioning me about my "baby bump" and the curiosity that naturally arises when people see a pregnant woman. But I LOVE, LOVE, LOVE looking pregnant! Even something as small as finally being able to wear maternity clothes has been such wonderful experience.

Finally, on June 12th, we had another scheduled ultrasound. Ryan had been anxious for this appointment because it had been over a month since he last saw Christian. It was a very special ultrasound because our technician was able to let us view it in 3D. Talk about being a magical experience! We spent another 1.5 hours with our son and we actually got see what he looks like! HE HAS MY NOSE!!! He's growing hair...he still loves his feet... we got to see him breathing. We even saw him sucking his thumb! And I swear he blew us a kiss..or at least he puckered his lips as if to do so. Believe me when I tell you that he is truly the most beautiful and perfect little boy!

Even more incredible is that he still continues to grow and develop normally . Now, ALL the cysts are gone on his brain and his organs are still continuing to function properly. He doesn't have clenched hands, clubbed feet, or a cleft palate. And he is now 14" long and weighs 2.4 lbs...right on target with his gestational age. Our son is such an amazing little boy!

Many people have told us they are praying for a miracle and we feel we have certainly received one. Christian continues to get stronger despite having Trisomy 18. We are so optimistic at this point that he will definitely be strong enough to be born!

Your many prayers, emails, and good wishes for our family have kept our family strong during these difficult weeks and we are so grateful to each and everyone of you for letting us know that you are thinking of us. I hope this latest update has lifted your spirits as it has ours. Please know that your prayers are working... and we ask you to please continue to keep Christian in your thoughts and prayers. He is doing so well right now and we live only to be able to hold him and tell him we love him!

Letter from Dad

2008-05-27T19:22:00.003-04:00

Son,
Have I told you today how much I love you? You bring to your mom and I such joy, with your antics: kicking, tumbling, and an occasional jab to mom's ribs. I love feeling you move around in mom's belly. You make me smile knowing that you are so active. I'm sorry I missed your last ultra sound, but I had to fight some brush fires, which took me away from home for awhile. I miss you when I'm gone, but I do think of you. Actually, sometimes you are all I think about. Your now about 15 inches long and about 2lbs. Way to go champ! Can't wait to hold you!

Hang in there...love,
Dad

2008-05-15T21:04:00.002-04:00

Dear Little Christian Dale Paige (I love your name),
This is Grandma 'Mina" saying hello & I love you dear grandson. Your mama says you did well in your ultrasound today, grabing your toes & all your hand signals. I'm sooooo proud of you! You know you have the most loving parents in the world and I am soooo proud of them, too. I can't wait to see you. I know you will have dark hair & eyes like your mommy & daddy.
Many, many people are praying for you and them and for a miracle. We are so blessed to have such support and love. You are coming into a strong, loving family that will take wonderful care of you and protect you. You also have quite a special family waiting for you in heaven who will take good care of you. Auntie Beth, Great Grandpa Rocky, Grandpa Paige, Great Grandpa Bob, Aunt Dolores, Uncle Bill and the Skidmores. They are all such special people and we miss them so.
I pray that we will have some time with you so you can feel our love first hand.
Keep growing little one. We're patiently waiting for your arrival with our arms and hearts wide open.
All my love,
Grandma 'Mina'
P.S. I am a nurse & respiratory therapist and will help mommy and daddy take good care or you. That's what I do!

Dear Christian, It's your dad...

2008-05-12T21:41:00.003-04:00

Son..., I have been wanting to say that word all my life. You are a blessing to your mother and me. I felt you kicking inside mom's belly the other day and I'm so looking forward to the day when I can hold you. Your mother and I have been waiting a long time to have someone special to give our love to...so be prepared to get alot of loving...we have been saving it up.

Son, I hope you like football...your mom is a big fan...and you are expected to arrive during the preseason. If the Colts are playing I'm sure I'll be the one changing your diaper.
They tell me your ears are developing and you can hear us...so I'll explain the the game one night so your not confused.

Son, Don't be alarmed when some nights you might not hear my voice or feel my hand when you kick. I am thinking of you. I'm just at work, caring for other families that need my help. I am a fire fighter like my dad (your grandfather) and his dad (your great grandfather). You have been named after me like I was named after them.

Son, Unlike your great grandfather teaching his son, and your grandfather teaching his son, your dad is being taught by you. God has blessed me with a teacher. A unborn child that is teaching me more about life than anyone that has lived before him.

Thank you Christian,

Love Dad

Letters to Christian

2008-05-12T09:20:00.017-04:00

Dear Son,

It's morning and I'm working on my daily routine... juice, vitamins, and now breakfast. I have a cranberry/blueberry muffin perched on my belly as I'm writing. I'm sorry you didn't get your usual cinnamon Pop-Tart this morning... it's your father's fault really. It's always a mad dash to see who gets the last one in the box...And well, as you already know...you're having a muffin. I promise, I'll work on that.

I do have to thank you ....having a portable table where ever I go has been pretty convenient. Although it's a bit frustrating not being able to see my feet...it seems I stub my toes pretty often these days. Another something I'll have to work on..

It's been a few days since I published the beginning of your story...I hope you will be proud of me. It was pretty tough getting through some of the events that have already taken place, but in all honesty, I feel much better. I know you've felt my sadness and I'm sorry for that, Son. I'm trying to get better for you. I promise, there will only be lots of smiles, hugs, and kisses on your birthday. I can't wait!

Have I told you lately that I think you're an amazing little boy?? I love you so much. Even though I'm your mom and I'm carrying you in my belly, I think it's you who is really carrying the load. Just knowing you're there happily floating around in your little water bath makes me want to get out of bed in morning. When I don't feel like eating...it's you who reminds me that I have to make decisions for the both of us... You make me laugh every time I feel you kick... and you made your father's day on Saturday when he felt you kick for the very first time... You are already so strong... and I am so proud of you.

You are also changing lives... Your Papa, Auntie Jahna, Cody and Ricci gave blood on your behalf last Thursday. Your daddy set a record as he was finished giving blood in just over 10 minutes... I think it's because he has such a Big Heart. Also, it was a HUGE milestone for the Cameron clan...you see, Son, it was the FIRST time any of them had ever given blood. And it was because of you! You are already responsible for helping to save lives... No mother could ever be more proud. I love you.

Finally, in case you were wondering what all the ruckus was about the other night... Your father was trying to read, "Horton Hears a Who", to you and I couldn't stop laughing. The book reminds us that, 'A person's a person. No matter how small!" We just LOVE that message.

Your friends have dropped off several Dr. Suess books for us to read to you...You are such a lucky boy! Already Loved by so many! Unfortunately, your dad and I are out of practice reading these types of books and we stumble over the words to the point of giggles. He almost gave up and started trying to explain how to build a car engine to you instead...but I made him charge on.

We're doing our best, Son... and I promise we will only get better with more practice...

Well, that's all for now... I just want to tell you, I love you. Keep kicking and letting me know you are there... It's truly the bright spot in my day.

Love, Mom...

Our Introduction

2008-05-09T18:06:00.009-04:00

Well, here we are at the very beginning of our story...Christian's story. My husband and I already know how this story will end...but I'll tell you more about that as we go along. I guess it would be better to start by telling you that I'm 24 weeks pregnant with my first child, Christian Dale Paige.

This initial post is pretty long because I wanted to give you an overview of what has transpired over the last several months leading up to this day. You see, 2 1/2 weeks ago, my son was diagnosed as having Trisomy 18 - a rare and fatal genetic defect. I'm carrying this precious life...just below my heart... knowing that he is going to die.

My husband and I have made the decision to choose life...regardless of how little time we have with him...over terminating this beautiful gift from God as some of our doctors have recommended. It's a tough road and we are so sad. But we wanted to share our story... because regardless of how long our son has here on earth... He matters... He's going to die...but still, he MATTERS...

Already, we see the enormous impact our dear Christian has had on the lives of our friends and family. My husband and I have received so much love and support during this time...because everyone agrees...our son matters.

When I mentioned earlier that we knew how Christian's story will end...I meant that we know TI8 or Edwards' Syndrome (as it is also known by) is fatal... "Incompatible with Life" is the medical term... such a cold term for a life which continues to grow. What we don't know and what we are committed to is Christian's journey to that point. Sure, we will shed many tears along the way...but Ryan and I will grow as individuals, become stronger in our marriage, and truly learn what it means to appreciate the little things in life.

We are excited to celebrate Christian's LIFE...

"Life is not measured by the number of breaths we take, but by the moments that take our breath away." ~ Unknown

Christian's journey began on December 15, 2007. This is the day 4 fertilized embryos were "launched" into my uterus. My husband, Ryan, and I have tried unsuccessfully for years to conceive children on our own. So, with the help of a fertility specialist we placed all of our hopes for children on these 4 little embryos.

From the beginning, we knew our chances for children would be slim at best. Our doctor gave us a 30% chance of becoming pregnant. But it was a chance we wanted to take. In fact, we thought with odds that good, we just had to go for it... What IF one of those little guys took!

By Dec. 22nd, I started peeing on a pregnancy stick. I was so nervous and scared... but in a small way, I just KNEW I was pregnant. On the first test, the "pregnant" line was so faint...like maybe my brain was just signaling to my eyes what I wanted so desperately see. Of course, I showed the stick to Ryan and he said, "well, it kind of looks positive"... not so convincingly. It took 2 more days and 3 more test sticks for us to finally believe our dreams for a family might come true. We were so ecstatic! We announced the results to our entire family during our Christmas Eve celebration. We just couldn't wait for the "official" results via blood test from our doctor. Although we knew it was risky to make such an announcement, we also knew everyone would be so happy for us. It would be the best Christmas present ever. I miss the happiness of those first days so much...

By Dec. 26th, we got our official blood test from the doctor and, of course, it confirmed what Ryan and I had already started to tell the world... WE ARE PREGNANT... AT LAST!

Because fertility treatments are so exact with regard to timing, it was nice to be able to get information right away about our pregnancy. At our stage, most people don't even know they are pregnant...and probably wouldn't know for several weeks. But, by the time the New Year rolled around, we were already scheduled for our first ultrasound.

Jan. 7th was the first day we actually got to see our little ones growing. We could hardly believe our eyes when we saw 2 gestational sacs... TWINS! Life was so good and our many, many prayers for a family were being answered. Although, we saw the 2 sacs, we were a little alarmed when 1 of them was considerably smaller than the other... about a quarter of the size in fact. And no heartbeats.. We were told it was too early to see the heartbeat and another ultrasound was scheduled for the following week...5.5 weeks.. hopefully, we'd see these new lives forming...

By the following week, we were delighted to see that both sacs were now almost the same size but still no heartbeats... I remember thinking that the possibility of a miscarriage was very real... and I just felt so scared...it's a terrible feeling and we felt it for the entire week until our next scheduled ultrasound at 6.5 weeks.

Our nerves were absolutely frayed by this point. We kept praying for God to help jump start these little hearts so we could see life growing at last. That week seemed to drag on forever. But once we got to the doctor's office, all the worry seemed to vanish within minutes. We got TWO heartbeats...and they were strong! Through tears of joy, Ryan and I held hands and whispered how much we loved each other, totally oblivious to the fact we had several people in the room with us. We had truly been blessed.

I think we made at least 20 phone calls between our doctor's office and home that day...just excited about the news that we were having twins. Our faces hurt from all the smiling we did that day. It was just a great day all around.

At 8.5 weeks, we went in for our final ultrasound with our fertility doctor. It was a milestone in our pregnancy because we were actually being released to find a regular OB/GYN. Regardless, of what mountain we felt like we had moved to get pregnant, we were going to be like every other blessed couple who experiences a normal pregnancy.

I was so naive those first weeks...I thought the toughest obstacle we would have to overcome was actually getting pregnant. And since we obviously tackled that with few problems, I believed my pregnancy would be smooth sailing from then on. How I was so wrong.

Ryan's mom, Patti, was also with us during this ultrasound and we were so happy to share the experience. After a couple minutes on the table though, we knew something was wrong. We only had one heartbeat. One of our babies had died. At first, we were all stunned... then sadness started creeping in... we were already a family and had become so attached to our little ones in the 2 weeks since we first learned of our twins.

It's hard to totally describe how I felt that day... On one hand, I was relieved and happy to know that we still had one viable heartbeat but, I just couldn't let myself be happy because one of our babies had died. I felt guilty about being relieved that I still had the one baby. Also, there was the eventual realization that something could go wrong, something HAD gone wrong in my pregnancy... Fear was something I would get used to feeling from that day forward...

After finally embracing the loss of Baby "A", I focused my energy on Baby "B"... Of course, I felt very blessed and thankful that the Lord had given us this child. I knew that whatever God had planned for us, everything was as it should be and Ryan and I would have to hold on tight for the ride of our lives.

Actually, with the exception of losing Baby "A", my first trimester went smoothly. I had no morning sickness, no usual pregnancy trials and tribulations, and I was glad. It was at about this time we learned that Ryan's sister, Holly, was also pregnant as well as very dear friends of ours in Chicago, John and Mylinda. It was such an exciting time for the Paige family. So many people pregnant at the same time... Every time Ryan and I locked eyes no matter where we were or what we were doing, we would just giggle like 2 kids....we were so happy.

Even so, there was still that lingering fear in me...that I was not in the clear. Apparently, a miscarriage was still a real possibility until around 14 weeks. I counted the days with baited breathe...just hoping to get to that milestone before I truly allowed myself to feel comfortable and celebrate my pregnancy.

Feb. 25th was our first appointment with our regular OB/GYN.... Again, Ryan's mom came with us and we got to see Baby "B" through yet another ultrasound... How we lived for those brief glimpses of the new life forming inside of me. It was during this time I started thinking Baby "B" was really a baby boy... mostly because at this ultrasound we got to see our future football star throwing his little arm over head as if he was throwing a winning touchdown pass. We were absolutely amazed by how active our little baby was! It would be another month before we learned what the sex would be.

On Mar. 25th, I was sent to another group of doctors which handled high risk pregnancies. I'm considered high risk because, at my age (40 yrs old), there is a greater possibility for problems... chromosomal abnormalities and genetic defects, specifically. We met with a genetic counselor who went over the statistics, but, because they were so remote, I truly believed we had nothing to worry about. I had blood drawn earlier in my pregnancy to check for any kind of problems and so far I was in the clear. In fact, I remember the counselor telling me about Trisomy 21 - Down's Syndrome, and then 2 other Trisomy's...18 and 13. She barely touched on the last 2 Trisomy's because they were so rare.. I hardly gave it any notice.

I had an ultrasound that same day which measured all the key parts of our baby and everything looked good... normal and healthy. However, at the time, our technician couldn't get a good view our baby's heart...mainly because our baby was so active...twisting and turning every time we tried to zero in on the heart. We were told that we would have to come back in a few weeks to get the view they were looking for... we had no idea there was cause for any concern.

One thing we did learn on this day was that Baby "B" was actually a baby BOY... TOTAL ELATION. Of course, we already knew this would the case... mainly because Ryan and I could only agree on a boy's name! Christian Dale Paige. We love the name Christian and Ryan's middle name is also Dale...so, it was perfect! Personally, I had a feeling I was having a boy...because so far in my pregnancy, I had experienced the WORST gas of my life... I was sure it was something that could only be brought on by a boy. :o) Ryan was so proud... he couldn't wait to tell the guys at the fire station that he was having a son. Everything was perfect and we felt so very blessed.

Around the beginning of April, we got a call from my OB/GYN's office that would change our lives forever... one of the triple marker screens (a blood test) I took earlier in my pregnancy finally came back and it was positive for Trisomy 18. I remember that day so vividly. I was at the fire station visiting Ryan on Shift. We were sitting across from one another at a picnic table when I received the call. In an instant, I could barely breathe. My legs felt weak and I felt pain come over me like I'd never felt in my entire life. I barely got through the call when I collapsed into Ryan's arms trying to tell him what our doctor had just relayed to me... I could only speak in convulsing breaths. I kept doubling over and repeating Trisomy 18....What does that mean...what does that mean??!! Of course, my actions scared Ryan to death...he'd never seen me that upset before.

I drove home immediately and began searching the Internet for information about Trisomy 18. I only remembered that the genetic counselor said it was so rare that we barely covered the defect in our office meeting a couple weeks earlier. Of course, when I looked it up, I could hardly believe what I read... NOTHING was positive ... our baby would die from this genetic disorder...it would only be a matter of time.

Fortunately for me, Ryan was able to get someone to cover the rest of his 24 hour shift at the fire station and he arrived home about an hour later. He had done some research after I left and made additional calls to our doctor's office to go over the information that had been conveyed to me earlier.

Because of his job as a firefighter, he constantly deals with many different stressful situations...many of them life and death. I think his experiences truly helped him with his ability to not panic during this time. Ryan is my hero in every sense of the word... he's the calm in the eye of a storm... and my best friend when I need a shoulder to lean on.

Calmly, he explained that this was only a marker...and there is always a ridiculously high percentage of false positives with these triple marker screens. He said we had to wait until the doctors could get a better view of Christian's heart. Also, we needed to see if additional visual markers would show up on our upcoming ultrasound before assuming the worst. He also reminded me that everything looked great on our baby so far...Christian showed no other visual signs of Trisomy 18 at our last ultrasound.

Apparently, babies with T18 have so many deformities... clenched hands, clubbed feet, as well as a laundry list of organ deformities that just weren't present when we last saw Christian. Through a blur of tears, I started to actually hear what he was saying to me and I felt the grip of fear loosening around my heart. I would have to wait 2 1/2 more weeks before we would get more information.

Over the next few days, we spent many hours scouring the Internet for anything related to T18, we shared many conversations about how we were feeling and really kept the lines of communication open. My emotions were so raw... I just kept repeating everything Ryan said... Our baby has none of the markers that are typically present in a T18 baby. This must definitely be a false positive.

On April 17th, we went into our ultrasound appointment pretty much convinced that the marker screen was just another false positive... Surprisingly, our spirits were quite high and we expected to hear only good news about Christian's heart.

Unfortunately, that feeling was short lived.

We learned that Christian had a heart defect called Tetrology of Fallot....basically he had an over-riding aorta and a hole in his heart. Our technician told us that is was a fairly common heart defect and that it was definitely operable. In addition to his heart defect, she found some fluid on his brain. She said typically the fluid goes away around 24 weeks and that she sees it quite often during ultrasound scans. But we also knew from our research on the Internet that many babies (about 90%) with genetic defects often have heart problems. And we also knew that the fluid on the brain was another visual marker for T18. Our hearts sunk.

At that point, we were counseled about having an amniocentesis done to rule out T18 or any other genetic disorder and we had to seriously consider it. Previously, we had been counseled on the risks of this type of test and we were pretty adamant about causing any further risk to my pregnancy by having such a test performed. But in light of what we had just learned, we really saw no choice. The amnio was done the very same day. I remember laying on the table and praying...begging really... for God to please intervene and help my baby.

Before we left, our doctor scheduled an appointment with a leading pediatric cardiologist for April 29th to discuss future surgical options we would need to consider for Christian. I was numb by what was happening... I couldn't believe it. We were told we would have the results by Monday or Tuesday of the following week... Another long wait.

We kept praying, "Lord, just please, please let it only be a heart defect and not the other. We can deal with that... we'll give Christian the best possible care... Just please give us some Hope".

We were actually PRAYING for a heart defect... no longer did we have the choice of hoping for a healthy baby... "Just Please Lord, please, please don't let it be Trisomy 18." No parent should have to wish for such a thing. ever.

On Sunday, one of Ryan's firefighter buddies, Hank, came over... it seemed he had something he wanted to tell Ryan in person. Of course, our news had already begun traveling throughout the fire department and many people let us know that they were praying for our family and offering support. Hank told us that he had made some calls and several of the guys volunteered their time to cover Ryan's shift on Monday so that he could be home with me if we got the results from our amnio. We were so overcome with gratitude! These guys work 24 hour shifts...most have families... and they were willing to give up their precious time off to help us out!

Words cannot describe how completely humbled we were by the outpouring of support. Just knowing people were thinking about us and cared about what happening to us really has meant so much. Thank you North Naples Fire District. We love you guys!

By the time Monday arrived, our spirits were considerably lifted... mostly due to our friends just being there for us. I had a doctor appointment with my regular OB/GYN and updated him on the last ultrasound and subsequent amnio test. We discussed the heart defect and fluid on the brain and he told us to be positive. He said these things could just be coincidental of each other. The likelihood of having T18 was 1:1,000,000... such great odds!

How could we possibly be the ONE in a million.

Our spirits were the highest they had been since learning of the possibility of T18. By 4:00 p.m., we knew that it wasn't likely we would receive the results from the amnio that day so Ryan went back to work to complete his shift and give his buddies the much needed time off they deserved.

I forgot to mention that during these last couple of weeks, I'd been dealing with a pretty bad cold. Ryan brought it home from work one day... and it just lingered on. I'd been constantly coughing and hacking for days... feeling pretty lousy on top of feeling LOUSY if you know what I mean.

Well anyway, for the past several days, my ribs were hurting considerably, and it finally got the best of me that evening. I could barely breathe, much less move. I finally broke down and called Ryan at the station at 5 a.m. and told him I thought I was dying. He asked me if I could hold on until he got home at 8 a.m. and I told him I thought I could do that... I was wrong. I managed to get myself in the car...and drive to the station around 5:30 a.m. Ryan ended up taking me to the emergency room where we learned that due to all the coughing and hacking I'd been struggling with, I managed to fracture a rib.

Just my luck, right?! I spent nearly 4 hours in the emergency room where, after much needed convincing by the doctors, I allowed them to administer a couple of doses of morphine to help ease my pain. We arrived home shortly after 9:30 a.m.

Because I'd been so sick and I'd been given a dose of morphine, my blood pressure dropped pretty rapidly. As soon as I opened the car door, I passed out in our driveway... Poor Ryan! Here he was trying to revive me while I lay spread out on the concrete drive. Have I told you that Ryan is my hero? He didn't panic at all! After several moments, he managed to get me in the house where he propped me on the sofa and administered care to get my blood pressure back to normal.

I had just begun to feel better, when the call came in. We missed the first call because Ryan was too busy trying to get me off our driveway.

Ryan answered the phone and I tried to understand the conversation through his grunts and "um hmms". Finally, he said out loud, "...so it's positive." It seemed like we just weren't catching any breaks! Despite my brain being fuzzy from the morphine and the pain I felt from my cracked rib... I had just enough in me to take the phone from Ryan and talk with the doctor. I asked her if there was any hope that we might have gotten a false positive and she assured me that these tests were 99.9% accurate. She said we needed to take this day to cry and grieve for our baby. Then, we needed to make some decisions... and we needed to make them fairly quickly. I knew what she meant by that... She wanted us to terminate our child. Our beautiful child who we'd watched through numerous ultrasounds...our feisty little boy who was so active..doing summersaults in my belly... She wanted us to end his life.

It was as if his life ceased to matter now that it was confirmed he had Trisomy 18 ~ Incompatible with Life.

We hung up the phone and just melted into tears. So much hope and so many dreams just completed shattered. Neither one of us moved very much for 2 days. We slept and cried often during that time. Truly feeling like we were in the worst nightmare.

Finally, we started thinking about what our options would be. Definitely, we agreed terminating the pregnancy was NOT an option. We absolutely love our son... Have from the first moment we saw his little heart beating. We realize because we still have a few months before my due date, it would be extremely difficult on us emotionally. But it doesn't matter... we are determined to stick by our son through this journey.

So this is where we invite you to join us. I've caught you up on everything that has transpired, thusfar. We don't know what God has in store of us...all three of us.. But we do know HE has a plan.

It is our hope that Christian will live to see his birthday. It is mine and Ryan's only hope to be able to hold our son and tell him we love him while he still has breath in his lungs.

From this point forward, I'll be able to update weekly... with MUCH shorter posts. Ryan and I ask you to please keep all three of us in your prayers. We are really struggling these days...but having our family and friends close to us has really helped.

With Love,

Leah Paige

If you would like to email us, we would love to hear from you at lpnaples@comcast.net or rpaige2004@comcast.net. Or if you would like to write our address is:

Ryan and Leah Paige

830 93rd Avenue North

Naples, FL 34108