September 8, 2008

Dark Days

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.



Anonymous said...

Leah, God loves you. He does LOVE you and he has a plan for your and Ryan's life. This time of intense grief will surely pass. He trusted you to carry that precious boy for a reason; he knew you and Ryan would choose to carry him to term and give him life. There was a reason for that. He knew your strength; he knew he could count on you for that sweet soul. Trust him, let him heal you now so that his will can continue to be done. My name is Donna from Alabama and I'm praying for you everyday.

Betsy McK said...

My heart just breaks for you. I have never been in your shoes, and really don't have the right words either. I think this process will be a long road to travel filled with highs and lows. I would possibly suggest finding a support group for parents who have lost their children. Perhaps you will find support from the grief counselors and other parents which may help you to process your feelings.
It's clear that you have your faith, so I would just stay to cling to God and just let him carry you right now.
Here is a poem that I really like and maybe you will find some comfort in the words.

One night a man had a dream. He dreamed
he was walking along the beach with the LORD.

Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.

He noticed that many times along the path of
his life there was only one set of footprints.

He also noticed that it happened at the very
lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most you would leave me."

The LORD replied:

"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

Give it all over to God and let him carry you now.
Sending many prayers and hugs your way.
Betsy in Arizona

KingsLittleBlessings said...

I'm so sorry. You have been through pretty much the worst thing that all of us mommies fear. I know it's going to be hard on you for a long time. Try not to beat yourself up, or worry about the actions that you think you could have or should have taken. You did the very best thing for your son! You were the best mama to him for the time you had him! He knew/knows how much you love him and wanted him here with you. God will uphold you through all this yuck. Our family is praying for your family daily.
The King Family

Amber said...

I am so very sorry for your loss...I can't begin to imagine your pain. Praying....for peace and comfort.

Adrienne W said...

I'm a complete stranger to you, but I've been following your blog for a while. I am a NICU nurse in Salt Lake City, Utah so I am familiar with Christian's diagnosis. I just wanted to thank you for your beautiful posts and let you know that it is wonderful to see parents so in love with their baby. It's also refreshing to see parents who have their infant's best interest in mind, although difficult for the parents. I don't have any words of wisdom to help you through this difficult time. Just wanted to tell you that I've thought a lot about your family. Thanks for sharing your beautiful little boy with the world, he has touched my life, the life of a complete stranger. Also, I wanted to add that you are beautiful Leah.

lolo said...

it will get easier. let yourself go through what you are going through and know that it will move you past it. this will always be a part of you now but you can use it to the best of your ability. make his mark on your life a positive one when its all said and done. i'm so sorry you have to go through this. much love to you.

The Pittsburgh Hites said...

Oh Leah,
My face is streaked with tears as I finish reading this post. Oh so I wish that it had been a peaceful passing for your sweet boy. I cannot even imagine what that was like. I wish I could say I don't know that noise of a newborn struggling, but as I read your post it took me back to our little guy's first day. It was horrible, listening to him struggle to breathe, to live. Our little man did get vented, without our knowledge(we had just went back upstairs because he was sleeping)and they could not get a hold of us(the phone in our room did not work)Our little guy got the medicine he needed and is now fine, but that sound. Your post brought it all back.
Continue being brave and strong and just take it one day at a time. Continue to hold your husband, you are right, even if he is trying to be there for you, he is grieving just as much.
Last year we had a miscarriage and I took it badly, I wanted my baby in the worst way. My husband, while putting up a brave front and taking care of me, he struggled on his own. It took him months to cope with what had happened. We decided to try again, and let me tell you, those were the longest six months of my life. I was desperate to be pregnant again, and when we were I was elated, but a piece of my heart was still missing.
I think what I am trying to say, don't let this consume you. You are young and beautiful and have a loving husband. There was nothing, NOTHING you could have done to save Christian. You put it in God's hands, and got to hold him close as he called him home. Christian knew you both loved him, and now he knows the love of our Heavenly Father.
Grieve, sob, lay in bed and do nothing...but don't forget to get up and BE again. Remember to leave a part of your heart for your future. God has more in store for you. You will always be Christian's mommy and daddy, keep that close to your heart. Go to my blog when you get the chance, I posted something just for you. I'm praying for you, both of you.

Anonymous said...

Oh Leah I am so sorry your heart is broke. It is not your fault and there was nothing you could have done any differently than you already did. You loved him and he felt that love. I don't know how to help you move on because I have never been in your shoes, but I do no that you will see him someday again in heaven, he will be your's and Ryan's and any future children you bring into this world's guardian angel from now on and will be watching over you.. I hope that helps some!! I am praying for you that you will find peace in your heart and not to blame your self.

Mrs. Mother said...

I am so sorry you are feeling so low, but it is expected after a loss of such magnitude. I am so sorry you are going to have to go through this. No one should have to lose a child to such a cruel twist of fate. Again, I have nothing I can say to make you feel better, but please know I'm sending you huge hugs.

Cathy said...

I can't sit here and say I can imagine you pain, because I cannot. One thing I am sure of is that you could have done nothing more than you did. You chose life for your son, you didn't chose the easy way out. You loved him with all your heart and soul, so deep and that depth you are feeling so much now. But Leah, do grieve for your little one who you miss so much, but do not grieve that you could have do any more than you did. I know it is hard, but you held him until Jesus came and carried him home. He knew only the deepest,most perfect love from conception to his Heavenly dwelling. Praying for this to ease and that you will find some brightness a little more day by day.

Stephanie said...

I've been following your blog since Kenzie posted about you. I'm so sorry for the loss of you little boy. I found this and thought of you.

Like the butterfly who lights beside us
like a sunbeam -
for a brief moment
its glory and beauty
belong to our world -
but then it flies on again.

And though we wish it could have stayed
we are so thankful to have seen it.

Carol said...

Dear Leah,
I just discovered your site on Saturday and I spent hours reading your story. I wept as I read of your precious son and the pain and heartache you are now going through.
I have no words of wisdom... only an offer of friendship and prayer. I have already prayed for you and will continue to do so. It probably seems weird to hear from someone you don't know but I wanted you to know that a friend from Canada is praying for you.

Susan said...

Leah, I am so sorry you are feeling so lost.You have nothing to forgive yourself for.You are the greatest mother Christian could have had and he knew that as he laid in your arms & looked in your eyes. He is watching you from heaven now and wants you to be able to go forward and not be so sad.He misses you too but God needed him now.He is at peace and wishes you were too. My prayers are with you.Susan from CA

Anonymous said...

This time will be the hardest - where other people are moving on with their lives, and they stop acknowledging your huge loss. You and Ryan were the ones who REALLY felt this loss, and even with that, you will both deal with it in such different ways. I know you will feel alone at times. You have every right to feel that way. You will always have a place in your heart that is just for Christian, and it will probably never heal. Just know that it's OK to have that spot on your heart - where it never has to be OK. While you have to accept it, you never have to feel good about it. Sometimes I think that's what helps - knowing there is pain, but that you will find a way to go on.
You don't know me, and I cannot relate to the loss you have experienced these last few months. However, I pray for you and your family, and for your little boy. Give yourself time to adjust. God will help you through this.

Lola said...

I'm afraid I don't know what to say to make it better. But what I do know is that you have to let the grief over take you. It looks like it will be too much to handle. Like it will completely devour you and kill you but you have heave the sobs and sink into the depths and it is only then that you will find you are laying on the promises of Christ and your eyes will open and you will still be breathing and from there you can begin to heal. But you cannot heal until you grieve. Don't fight it and don't try to "get better" too soon. This world is so full of sin and hurt and you have lost your baby. You are so hurt and sad, so be that. Wail and He will wail with you. And in time, it will start to hurt a little less and you will smile a little more. Find people to cry with you and love you and smile and laugh with you. God will not forsake.

The Liebers said...

I don't know what to say except that I am praying for you. I have been following your story and am amazed with your strength and you faith.

Nancy said...

Dear Leah,

My heart breaks for you b/c I know your anguish. 6 1/2 years ago I lost a child with T-18 - Chloe. I was so angry and felt helpless - Chloe was to be my first child - after two years of infertility - I felt this wasn't fair - all our dreams and hopes were on this little girl. When we also heard the term "incompatable with life" a part of me died.

After loosing her I was so angry and mad - all I wanted to do was throw and break things! I am not a violent person by nature but this urge was so strong - so Rob (DH) bought me bags of rocks and took me out into the woods and I threw rocks and screamed in the woods for hours. I know it sounds silly but it really helped me- even though I could not move my arm for days after wards!

We planted a Cherry blossom tree on what would have been Chloe's first birthday - and we had this tree blessed by a priest. This tree gives me great comfort as I see it every day as I leave the house. We take pictures under this tree and I find myself talking to it constantly as I water and take care of it. Every spring as it blooms I am reminded of my journey but the memories don't hurt as much.

Your pain will get easier and you will never have a day that you don't think about your son, Christian - but the memories will change from the tragic events to the sweet memories - please trust me on this.

You and Ryan will go on to have a beautiful family and Christian will smile from above.

Nancy in Massachusetts
Mommy to Chloe, Annika & Paige (5 year old twins)

Anonymous said...

We don't know eachother but I have been following your blog. It makes my so sad to hear your words. Having read your blog I know that you have no reason to blame yourself for what happened to your precious son. You and your husband are great parents for giving him the chance for life. Many parents don't give their child that chance. I have been praying for you and your family and will continue to do so. I think the place you are at with your feelings are all normal for the grieving process. Please don't blame yourself. I hope your days get a little bit more bright soon. Katie

Shari U said...

Leah, you have to rest in God's peace. There are no words that can be spoken to ease your pain. I know right now everything seems so dark and so hopeless, but there will be better and happier days ahead. Your son was beautiful and what a wonderful and beautiful mother you are to have given him life and to have held him and comforted him. May God bless you and give you peace.

boltefamily said...

Sweet Leah,

I am in tears as I try to assemble some words of comfort, afraid there are none. I have been where you are. I have held my dying son, twice actually I have watched one of my children slip away and it is not easy.

You need to know there is nothing you could have done differently to change this outcome. This as sucky as it is, is the plan God had for Christian. I do not know why and I know it doesn't make it hurt less when you want him so badly to be in your arms.

We serve a big God. A God bigger than any of us can even comprehend therefore we do not understand what he is doing. I promise you though that he is a God who loves you with a passion, and loves Christian as much.

What you are feeling is so "normal" and you are not alone in this. I am praying for you Leah and I want you to know I am here for you, if you ever need to talk just email me and I can call you or whatever. I know I don't know you, but I love you Leah, I love your heart and I love the mommy you are!

Much Love and Many Prayers,


siscaboo said...


You do not know me, but, I have been following your blog ever since Kenzie posted it.

I have been where you are, only a little over a year ago. I too held my son in my arms as he struggled to live. While JT had a different diagnosis, it still hurt like Hell to loose him. I had days that I just laid in bed, and was angry, very, very, angry. Reading your words had brought it all back, and you know what? I welcome it now, for me the pain lets me know that He was real, that Johnathan was my son, he was here.
But, those first months, I couldn't cope, I wouldn't let me grief just hit me full force and work through it. I almost would.

Until I finally said God, let's do this, I need to talk to you and you need to take it. I know I probably won't get any answers but, I need to talk, yell, scream at you for a moment. And I need to let this grief consume me for a moment because if I don't I will never get on the road to healing.

I went to the cemetary and told God every thing that I felt that I could put into words, and I let the Holy Spirit say for me the feelings that my mind could not. I sat there for about an hour just talking and crying and just letting God know exactly how I felt.

After I was done, I felt like a weight had been lifted off of my shoulders. God is a good God, he can take the bad with the good. He has big shoulders and they can carry things bigger than us for us.

Now, is that saying after that day I didn't have bad days? Of course not, but, by letting the grief consume me for that moment and being truthful with God how I felt instead of a "good Christian" who is forever kind to God then I was on the way to healing.

I still have really bad days, but, I know God is there waiting to help me through them.

I was just sharing with you what I did. Just to let you know that I have made it through this far and it was hard to get here but, I did by the grace of God.

I am praying for you! Know that you are an awesome mom, the love you had for your son is awesome. I was in the NICU with Johnathan for 8 1/2 months and I seen parents that never came to see their babies until the day they went home. You made memories, and the hard decisions. You was there, you loved him with all that you had. You fought for him until his new beginning. You did a great job.

Anonymous said...

You took the best care of Christian by letting God have his way, even though it seems like the worst thing for you. You let God love him and take care of him. Putting him on life support would not have made it any easier. Nothing is easy in this. Please know you are admired as an amazing mom that was willing to make the hard decisions that were involved in loving her child. Not everyone can say that. You carried him for those many months, that was loving him, you didn't have to do that but you made the choice to love him and let him have life even when it was hard. You made the right choice to sign the DNR, because it was the best way to love him(it really was), even though it was hard for you to do. You loved him in the most amazing way, don't ever doubt that. Sometimes God does that for us, makes choices for us that really are the best for us, even though we can't understand. And it grieves God too as he has to do the hard things to love us.
Christian is alive, he's alive in Jesus' arms enjoying all the perfection of heaven w/a completly healthy body. I pray for you everyday.

Christena said...

Dear Leah,

My heart is hurting so much for you. How else to put it, but that human grief sucks! And that it is part of life. When we open our hearts to the deepest depths of love, we also open our hearts to the deepest depths of pain. You did both and got the biggest dose of both that life has to offer. Your darling little boy was surrounded by love in his life here on earth. I promise you that you suffered much, much more than he ever did. Although dying is so hard for us to watch as healthy people who understand death, that was not the case for your sweet Christian. You comforted him and loved him in those last hours as his body made slowly let go of his spirit. His time here, however filled with sickness, was perfect because he was surrounded by nurturing and love. He was never alone. Our bodies have a way of protecting us from what looks like agony to those watching. As we take less oxygen into our lungs, our brains begin to shut down and so does all the discomfort and pain. Leah, you were such a good mother to your angel baby. And there is nothing to forgive. We all live and we all die - you made sure that both Christian's life and his passing were made perfect in love.

The only thing that I can recommend that might help is to reach out to others who have walked your same path. I know that you have connected with a number of other mothers who have walked this trisomy 18 road, but there are many more out there. You can visit the trisomy18 foundation's online support community blog and share your heartache there as well with many other mothers who have lost their children to t18. You can also seek out face to face support groups in your community for parents who have lost their children, either as infants or as older children. It is life's very worst pain and the journey is an individual struggle, but you are certainly not alone. Lastly, there are many women who talk to their doctors and are prescribed anti-depressants that can sometimes just dull the weight of grief enough to better focus on how to take the next step forward.

I so wish I could say something to make things even one iota easier for you, but I just know that's impossible. Please continue to reach out for help because there are mountains of people ready to help.

I'm sending a strong bear hug your way as I continue to hold you and Ryan in my thoughts and prayers.


Jen in Al said...

i am crying and praying for you....Blessed be the name of the Lord...jen in al

Rebecca said...

Leah...I've been following your blog for awhile now (I'm hooked!). I'm a new blog reader who started out on this little "blog addiction" with a blog called "thedemellos," a local family who lost their little boy after a heart transplant. Then I found another blog to read ontop of theirs...then another...then another - oddly enough, 99% of these blogs had a prayer need. I'm pretty certain I found your blog from a link another blogger posted seeking prayers for you, your husband and your little sweetheart Christian. Anyhow, I can't imagine what you have gone through in the past few months. I am probably sure that a year ago, you wouldn't have DREAMED that you would have been hurled into the place you are now. I don't know why God plans crazy things for us...but it's a fact that one day we'll look back at the good and bad things that happened and say, "Yeah. Now I see why that happened." Or, "Wow. Now I see why that DIDN'T happen." YOUR WORST DAY WAS CHRISTIAN'S BEST DAY. God bless you, Leah...and know that a total stranger is sitting here pulling and praying for you! ♥Rebecca

Rebecca CA said...

Just praying for you and strength.

Lean on him his arms are everlasting

Megster said...

I finally got a blogger site myself. Ever since I met you I fell in love with you. Your such a sweet person and ryan is really great. I've been following your journey ever since you told me of your site. I still think of you ever single day. I grow and learn from you. I know it may seem weird for someone younger to give advice but I know what it is like to loose someone. I lost my aunt and its the hardest thing to go through to loose anyone you love. Especially someone so precious as christian and to even of only had him for a short time. Every body handles pain differently. I didn't cry over my aunt until almost an entire month of going by and she'll be gone 2 years come november 4th and I still think of her. I wish to hug her and tell her all the crazy things I go through and laugh. I know that I can tell her things and she'll listen. I know that I can communicate with her through dreams as crazy as that sounds. I can explain to you how dreams have really helped me. Dreams are powerful, god is powerful, as well as love and faith. you have all of that and all you need is to trust that. You and Ryan will get through this. Your strong and your love and faith is even stronger. You'll get through this and take all the time you need to heal. It will be ok. God has a plan and a reason for everyone. I love you guys so much

your in my thoughts and prayers everyday.

Much love,

Susan said...

Hi Leah,

I have been following your blog for a while now. Although it's very difficult for you to see during the hard times, you have incredible strength and character that so many people admire. Your love for your son will eventually override the grief and pain that you are feeling. He is in the most glorious place possible smiling down on you. Think of all you accomplished for him. YOU gave him life...YOU gave him a chance, YOU delivered a miracle baby. In your times of darkness you should be so very proud of yourself. You are an exceptional mother and Christian is a very lucky boy to have you and Ryan as his parents. May your days get easier and your heart stronger as you continue on this journey with Ryan.

All my love,

tashia said...

This will be my third post. I am so sorry you are having such a difficult time. You lost the most precious thing a mother can lose; a child. Allow yourself to grief, to cry, to scream. Don't apologize for it, don't feel bad it is a normal process. I hope that God will continue to help carry you through this and show you how to cope during this time.
Here are two books you might be interested in. The first I know of from a fellow navy wife whose husband died unexpectedly when our spouses where on deployment, the second is written by 9 mothers who have lost chidren. They are:
I Wasn't Ready to Say Goodbye: Surviving, Coping and Healing After the Sudden Death of a Loved One AND Beyond Tears: Living After Losing a Child
Here is also a website that is dedicated to those who have lost an unborn child or young child and they also list some resources:
here is an organization that lists suport groups with one in naples:

I hope there are some support groups for you to find in your area once you are ready. You and your husband are in my thoughts and prayers.

Carla Burlando said...

My eyes are filled with tears as I read about your struggle..I know those feelings, I still on occasion wrestle with those questions re -living those moments, that hour. Could we have done something for him..even just to have a few more hours, why didn't I take more pictures, why didn't I apprecitate more at the time that time I had with him? How is it that we as mommies and Daddies can be so helpless to keep our babies safe when we would face a lion or storm the gates of hell to protect them. It goes against every maternal instinct to hold a dying child unable to do anyting but say goodbye. Our little Samuel died from Trisomy 18 8 years ago and reading about your little guy still makes my throat tighten and my eyes fill with tears. The pain does gradually ease, the gut wrenching sadness passes and the sad days become less and less frequent...until they are just a memory that is revisited on occasion. But right now the waves of sadness will continue to come on unexpected days in unexpected times. Stay close to God right now, in this dark valley...I know its hard to see him but he's there. Allow yourself the freedom to grieve. Life will begin again, I promise you..its hard to imagine right now but you will smile again, you will feel happy again...God still has a plan for you life. Christian will always be a part of your life, a member of your family. I find it helps to picture him healthy and happy in heaven...right now I imagine my eight year old tearing up and down those golden puts a smile on my face and make me dream of the day when I will hold him again. I will be praying for you.

asplashofsunshine said...

I hope you know you are a wonderful Mommy. Being strong right now may be close to impossible, but you were (and still are) strong for your baby boy. That is all that matters in this world. Christian knew it, you know it, and your husband knows it.

Every person grieves differently. Every person loves differently. Do this on your own time, your own pace, and in your own way. Cry when you need to cry. Scream when you need to scream. Laugh when you need to laugh.

I can not fathom your pain right now. I do not want to continue to write and pretend to know how you feel.

To conclude, you are a fabulous mommy. Never forget it...

Geertje said...

Dear Leah,

I am from Germany. Please, do not mind if my words therefore do not come in the best way.

There is one thing I felt while reading yesterday's post: Do not feel guilty.

I think you did all you could. You gave Dale shelter in your arms. You kept him warm and held him when he needed to go to his eternal home. You had carried him in your womb. You delivered him and loved him. Of course you still do so. You even let him go when he could not stay. I guess it is the hardest thing that could be asked from parents - letting their child go.

You have every right to grieve, to cry... But I do not see why you should feel bad on the decisions you both made. Don't get it wrong. Most likely every mother would ask herself questions like you do. Every parent would desperately wish he or she could have done anything to make him stay. But I am sure you are the perfect mom for Dale Christian! All you did was because of the love you feel for him.

I pray the Lord will bless you with peace. I know He loves you, Ryan and Dale. I do believe families are forever. I also believe you will be able to raise him some day. He will be your son forever. And he will be healthy. I do trust in the Lord's promise that He will take care for us. Not a single hair shall be lost.

Do not feel guilty for anything.


Anonymous said...


We have never met...I received your link from another blog before Christian was born and I have been praying for you since. I am a nursery nurse from Nashville so I am familiar with T-18. More than my knowledge of nursing I have knowledge of a God who knows you better than anyone and chose you to be Christian's mommy. I will never say that I understand how you feel because I have not walked in your shoes but I do know that we serve a God of peace and I pray that His loving arms be wrapped around you through this time of darkness. Trust Him and lean heavily on Him. I am praying for you.


debbie davis-plumb said...


amanda said...

Leah, I have been reading your blog for a couple of weeks but haven't commented yet. I am so so so sorry for all you're going through. I can't even begin to imagine how your heart hurts reliving all that you remember each day. And I don't have any words that will help heal your heart...but God does. He chose you out of all the mommies in the whole world to be Christian's mommy because He knew YOU would be the perfect mom for him...YOU would love him best and YOU would give all you had for him in the days he was with you. What a gift He gave you, your husband, and Christian.
Praying for your beautiful, sweet heart are not alone...
Amanda in Michigan

Darlene said...

Leah, I have been thinking on and praying about your post all day. I fear that I have no words that can help you. Only this, that I will be praying for Him to heal you directly, minister to your hurts, and reveal Himself to you as He weeps along side you.
The Holy Word can speak to you so much better than all of us.
I am reminded of Jesus's very nature in these verses:
"33When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34"Where have you laid him?" he asked.
"Come and see, Lord," they replied.

35Jesus wept." - John 11:33-35

I am so very sorry for your family's unspeakable pain, sweet sister in Christ.

Anonymous said...

Dear Leah
You made the best decision for your son. I will tell you a story. It is not my story. It is my sister's story. My sister was pregnant with her 2nd child in the fall of 1991. Her son was 2 years old. At a routine ultrasound, her world came crashing down. Her baby was diagnosed with ancephely.(sp) Her doctor was quick with a solution. Abortion, she was desperate. She was scared. She chose that option. She received no counseling. This is 17 years later, she still regrets it. You gave Christian so much in his short life. HE WAS LOVED. He was held in loving arms. He heard loving sounds. He lived. I know your world will not be easy. I know your arms are empty. I know your world will never be the same. But 110% I believe you made the right decision. My decision after my sister's situation, was no prenatal testing until after 20 weeks. I wanted no options. I loved my babies before they were born. I admire your courage. Christian was very, very fortunate to have such great parents. I was fortunate to have my healthy children. May you find peace. Please seek counseling. Within your church, or with a grief counselor.
May Peace Be With You
Lisa 3>

sea star said...

“The risk of love is loss, and the price of loss is grief -
But the pain of grief
Is only a shadow
When compared with the pain
Of never risking love.”
~Hilary Stanton Zunin

Love & hugs as you find your way to happier days. I know that it will come for you.

Becky said...

Leah - So many words, but none able to take away the pain except the promises found in His Word.
Several years ago there was a precious family who lost numerous (5-6)children in a horrible crash. I heard the mom speak on Focus on the Family and one of the things she was so thankful for was that she was knocked unconscious and did not have the images of her children as they perished in the fire due to the impact. You do have those visual images and as God's Word has told us, it is hard to wipe out those images. And they hurt. Very badly.
I will continue to pray for you Leah. Prayers that the Lord will not allow Satan to fill your mind with haunting images, but that you will be able to focus on those precious memories and know that you gave this little boy life and that life continues on.

Devon Rene said...

I found your blog from the Bolte Family...

You are just beginning this heart wrenching journey. Be kind to yourself. Don't second guess your decisions...You did what was best for your son.

We had to take our twin boys off life support and to this day I still relive every single moment of it. It's a decision no parent should ever have to make...

Holding you close to my heart and praying that God would meet you where you are.

Anonymous said...

I wish I had words to comfort you, but I don't. Just prayers, in Christian love.

Deb D. said...

Leah. Like the majority of bloggers here, I have not known your pain and loss. But I have known pain and loss. And I have learned from it. From the death of one I loved all my life in every cell of my body, I learned. I learned that the sorrow is frightening - but it doesn't destroy. I learned that life is forever changed - but God hasn't. I learned that as desperately as I wanted to change things for him - I couldn't. I feared that a human error caused him to leave prematurely. And when I began to go back through the day he died, and began to panic as to whether all the best was done for him - God eradicated my fears by one rhetorical question. He asked: "Am I not sovereign?"

Yes, He is sovereign. My loved one didn't die alone - God met him and escorted him to a new and better place. The place he died was holy - because God dispatched His angels to where he was to gather him home. What may have looked "unpleasant" in my human eyes limited by this earthly life, was holy from heaven's view.

Leah, God tells us in Psalm 139 (the Psalm in which David writes about how he was fearfully and wonderfully made) that "all the days ordained for me were written in your book before they came to be." All the days. The day Christian was born and the day Christian died. From the beginning of all time - from the very foundations of the earth - all of Christian's days were ordained.

You made no mistake, Leah. Know that with peace and assurance. You and Ryan prayed for Christian even before he was conceived - and especially so when you learned of his sad diagnosis. The two of you prayed to God for wisdom in all the decisions you would have to make. You prayed for strength. You prayed for guidance. You prayed to honor the Lord and honor the priceless gift he entrusted to you. God heard your cries for help. And He answered them all. He gave you wisdom, guidance, and strength. He was honored in the way you sought to honor the precious gift of Christian. God is BIG. He wouldn't let you make a mistake in something so precious to Him and to you and Ryan. You were entrusted with a great gift and a great sorrow. The gift will never be forgotten. The sorrow will ease. I promise you. I PROMISE (!) you.

If I may share one last thing I learned in the death of the one I loved so much, it was this. Both birth and death are "messy". I can't think of a more appropriate word right now. What I mean is that, as women know, the birth of a child is not "clean" - there is blood, water, and other materials that are "messy". Death for many is the same. When these bodies give out or are on their way of giving out, or the method of the body's death is brought to pass - it is "messy". I think that is part of the experience of human-ness. And it is difficult to witness and it hurts us to see it (on the death end) because somehow it feels undignified and dishonoring to the one we love. But I was comforted in realizing that this is the truth of coming into and departing this life. And though it may be the experience of many in their death - it is NOT the statement of their worth and dignity. You watched your precious son struggle. It WAS harder for you than it was for him. You in no way dishonored him or fell short in giving the best and most for him. You held him through the journey. Oh, that all of us could be so blessed as to have the person who loves us most hold us and love us to the very end. Christian passed from your loving arms to Jesus' loving hands in the time ordained for him by God. And you were faithful in it all. How pleased the Lord is with how you honored the gift He gave you.

Weep, mourn, and grieve, Leah. Christian is worthy of your sorrow. Feel safe to go into it, because I promise you, you won't be alone there nor left there. God will be in your sorrow waiting for you, and He will wait for you while you are there. Then, just as He gathered Christian into His hands, He will take you by the hand and lead you out and onward into the many joys yet ahead for you.

Thank you for trusting us with your honesty and vulnerability.

My sincerest blessings to you.

Debbie said...

There are no words to take this pain away. The deep hurt is a testimony to the level of your love for your son. I have been where you are now (although the getting there was not the same) I have stood by as a baby God had entrusted to me struggled to live and slowly died. Years later I can testify that the pain becomes more bearable day by day. The pain is so fresh for you now but will begin to ease as you rest in God's loving arms. Time does not heal, but God heals. I too felt that I had somehow not done enough, could have done more. The preceived guilt is too much to bear, try to let it go and replace those thoughts with the things you did to protect your baby through the months before you saw him and the days you were granted with him.
You are so very fortunate to have the outlet to write and share on your blog. You have friends who care and will listen when you need to talk.
Years ago that was not so. Mothers suffered alone. I know it may not feel so at the moment, but you are indeed blessed.
The pictures are lovely. A beautiful family. Praying you have
peace as you rest tonight.

Noah's Mommy said...

Dear Heavenly Father, I love you Lord. I ache so badly for this sweet mommy. I can't even imagine what she is feeling. Lord, I lift her up to you. Allow her to feel your presence. You are the ultimate comforter. I know that she is going to come through this with an amazing relationship with you. Christian has touched so many lives Lord. Continue to bring people to you through this sweet baby boy. I love you Lord. Thank you for the opportunity to "meet" this amazing family. In Jesus name, Amen

Susan said...

Dearest Leah,

There are just no words I could say that would take your pain away.

But I can pray for you and promise you there are others out there that have walked where you are now.

You are not alone.

Thanks for allowing us the honor of walking along side of you now.

I pray you feel the many prayers and great love that is being poured out towards you now.

I have a wonderful book I'd love to mail to you. It's called One Year Book of Hope by Nancy Guthrie. She lost 2 infants to a rare genetic disease.

There is HOPE.

In week one she said:

"Your feelings may tell you that God is very far away from you now. But the reality is that He is drawn to you. He is especially near to you now because you need Him desperately.

God loves broken-hearted people. He doesn't avoid them. He is closer to you now then ever, waiting to talk with you, comfort you, and offer you hope and healing as you face the future."

Keep holding on my sweet friend as we hold you up in prayer,


Autumn said...

My heart aches for you. I too have held my son in my arms as he left this world for Heaven. I know it is hard not to second guess yourself. What you are feeling is all so very normal. Know that you did all you could for him. You loved him with a love that is deep and unfathomable and to imagine God loves him more. Wow! You gave him love and you gave him life. I find comfort in knowing that our son only experienced a deep, pure love in his time here. Maybe that can bring you some comfort too. Christian only knew love... a love that transcends even death. Praying for you.

Autumn said...

I have been praying for have given me hope as I am on the same path carrying my son Max who has t18 also. I can't imagine the pain I have ahead but when I think about the spot your in my heart breaks. I did receive some wisdom from my cousin who lost her son...Christian is in the biggest and best rocking chair with Jesus and if you or I could see or understand the place he is in we would not want to bring him back. Just hold on and search and fight for peace and joy in his life and yours! Trish

Leah said...

I too have no words that will take away the pain...My heart breaks for you though I have not walked your path. I have experienced loss though and some very dark days and my advice its to cling...Cling to Jesus and He promises the sun will shine again. Praying for you....

Anonymous said...

Leah and Ryan, Giving your baby back to God is the hardest thing you will ever have to do. You will go through the stage sof thanking God he is safe and in perfect condition now and you will go through the stage of hating God and wanting to know why you, what did you do to desrve this. But there is a reason and still till this day I can not tell you what this reason is. When I had to make the decision to let my baby go back home It was the worst thing I ever had to do and the hardest decision that I ever had to make. Deep down I know it was the best thing I ever did but it still doesn't change the feelings that went through me and every dqy I had to wake up and remember her. I am thankfull today for the memories I have and the pictures and the precious time I had with her. Most of all was the friends. Just don't shut anyone out. It is very hard not to but everyone does care and they will be your rock for you. The more you talk and remeber Christian the better you'll be. Share all your feelings like you are and just be there for each other. It does get better. Each year it will be hard when you celebrate the birth and passing of your baby but each year it does get better. Don't give up either having another child. I look at my little girl today and I see my baby every day and what she would have looked like and remeber that she is up there watching. And today with another one on the way I feel blessed and scared all at the same time once again. I love you guys and know everything will be okay. Stay strong. Love Angela Coffey

Jacquie said...

I am so sorry you are hurting so badly. I don't think you realize the strength and comfort you gave your beloved son his whole life. You had the strength to hold him and talk to him and love him while he slipped away from you. I don't know that I would have had that strength. Your son was able to look at you and feel you, and if that wasn't the ultimate comfort for him, I don't know what would be. Your son was very blessed, and so are you. For every difficult moment of his life you remember, try to think of one sweet moment. A sigh, a scent, a moment. That may help some.

Anonymous said...

Leah, I came across you site just before your precious boy was born. I hurt for you. I pray for you.

Alyssa's mom said...

Hi Leah,

Have a steadfast heart...with a measure of understanding I grieve with you. We are strangers I know, but share in this Trisomy18 journey. Yesterday must of been marked as an emotional stormy day as I too had difficulty facing the realities of T18. We haven't yet had to demonstrate the courage and strength that you and Ryan have in laying your son to rest. I cannot offer much insight on how to move through the pain of this part of the journey. My gentle offering is letting you know that Christian's presence on this earth has touched my life. Thank you for sharing his life via the blog and your journey as we are only footsteps behind you. Your family will remain in my prayers. I am realizing that being affected by Trisomy18 is a part of God's mysterious plan to glorify Himself. Our God is good and Christian's life had meaning and has meaning still. I hope these words will bring you comfort in your dark days, knowing that your transparency will help you grow in ways you never imagined. You've helped me in your plea, as I think of what to say to you I apply to myself as well. I live for today as I don't know what tomorrow will bring, holding onto the joy our Alyssa brings us...

Have mercy on me, OF God, have mercy on me,
for in you my soul takes refuge.
I will take refuge in the shadow of your wings
until the disaster has passed.
I cry out to God Most High,
to God, who fulfills {his purpose} for me.

He sends from heaven and saves me,
rebuking those who hotly pursue me;
God sends his love and his faithfulness.

Psalm 57:1-3

Praying peace and comfort for you and yours...

Trish (Alyssa's mom)

Alyssa's mom said...

Hi Leah,

Have a steadfast heart...with a measure of understanding I grieve with you. We are strangers I know, but share in this Trisomy18 journey. Yesterday must of been marked as an emotional stormy day as I too had difficulty facing the realities of T18. We haven't yet had to demonstrate the courage and strength that you and Ryan have in laying your son to rest. I cannot offer much insight on how to move through the pain of this part of the journey. My gentle offering is letting you know that Christian's presence on this earth has touched my life. Thank you for sharing his life via the blog and your journey as we are only footsteps behind you. Your family will remain in my prayers. I am realizing that being affected by Trisomy18 is a part of God's mysterious plan to glorify Himself. Our God is good and Christian's life had meaning and has meaning still. I hope these words will bring you comfort in your dark days, knowing that your transparency will help you grow in ways you never imagined. You've helped me in your plea, as I think of what to say to you I apply to myself as well. I live for today as I don't know what tomorrow will bring, holding onto the joy our Alyssa brings us...

Have mercy on me, OF God, have mercy on me,
for in you my soul takes refuge.
I will take refuge in the shadow of your wings
until the disaster has passed.
I cry out to God Most High,
to God, who fulfills {his purpose} for me.

He sends from heaven and saves me,
rebuking those who hotly pursue me;
God sends his love and his faithfulness.

Psalm 57:1-3

Praying peace and comfort for you and yours...

Trish (Alyssa's mom)

Kathy said...

Dearest Leah,

My heart breaks and tears fall as I read of your pain and loss. So many wise words shared by others. I especially loved what "Deb D." shared. Much wisdom in her words.

So many other moms have experienced the loss of their beautiful children. I hear them say over and over, it's beyond awful to go through but God will see you through to the other side of grief.

Cling to the Lord and to your loving husband and know that many, many of us are lifting you up in prayer.

Thank you for the privilege of knowing your amazing little boy and for allowing us the honor of praying for you and Ryan.

May the Lord shower you with His peace that passes all understanding,

walkingbyfaith said...

My heart is aching for you and Ryan. I'm so sorry you're dealing with such helplessness, and the only thing I can really say [[because I don't want to leave a comment full of cliches or things you've heard a million times]] is I promise you God loves you. He's there, lean on Him.

I wish I could hug you and help you through this. Please know my prayers are with the two of you through this extremely difficult journey.

Marcea said...

I am so sorry for your loss. He truly is beautiful!

kekkey said...

On my bed I remember you; I think of you through the watches of the night. Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me.
Psalm 63:6-8

I am like everyone else--just hurting to hear the pain that you are in. We had a miscarriage several years ago, and I just remember that everything hurt. I thought I would never breathe again without feeling that ache in my chest. And then one day, a few months down the road, I realized that I had a smile on my face and could take a breathe without feeling the grief.

I still wish that baby was here with us. And I'll never be the same. But I can live and breathe and be happy.

You'll be there too Leah. Let God hold you up for now. He's strong enough for all of us!


Denise said...

You are grieving so deeply. Only God and time will heal your wounds. God knows what he was doing and even though we cannot understand his ways, we must believe that!! Christian is in heaven dancing with Jesus and even though we all wish he was here with us on earth, God had other plans for him. You did not do anything to cause Christian's death!! Just keep telling yourself that over and over again. Fall on God and his love for you! Yell at him (he can take it) cry out to him (he will listen and understand) Let his peace wash over you (you will feel renewed) and then go through those steps all over again and again! God will be there for you and even though it might not feel like it right now, he is holding you right at this very moment:) Praying for you in this time of extreme grief and loss:)

Anonymous said...

Be proud of yourself for making the decision to let your son receive his sudden healing from our Heavenly Father. Please know that it takes a stronger christian to let God take over than to choose modern medicine. You and your husband were only thinking of Christian by not choosing to hook him up to machines just for your own sake. You are excellent parents and really should be proud!

Baby Jacob said...


I am saddened to read of your heart aching. I can say I know the hurt. What keeps me from being swallowed in it? Being motivated by it. I do not want Satan to have a hold of my son's life and use it for his works. So, all I can say is, what would Christian want for his mother to do with his life? He wants her to miss him but he does not want her to be swallowed in her sadness of those last hours. How can the Lord use your baby's beautiful life for more good and not to pull you into a deep dark hole? Slowly step out of that hole and see is all as it terrible?...yes, but so was the cross that Christ endured....but yet at the same time it was beautiful. You will get will never "get over" those last moments, you will never "move on" but you will learn to live with you loss and you will do amazing things with your baby boy's life as he continues to touch lives.

God Bless,
Karen Fahmer

Anonymous said...

Oh, my heart hurts for you right now and for your dear husband. Know that there are brighter days ahead--this time frame is just a pebble in this pilgrimmage called life. I have found hope and encouragement through ANgie SMith at She is so straightforward with the pain and emotions but reminds me GOD is in control! Know you are thought of and prayed for from TX.

Susie said...

Praying in Louisville, KY.

Anonymous said...


I have been praying for you. I have been praying the God would bring comfort and strength to you during this most difficult time. No words can heal the wounds you now have as a mommy without her sweet baby. Only God can bring healing and only God can bring comfort. But through your family in Christ here, we can lift you up and storm the gates of heaven with our prayers for you to the Father.

This morning I found a journal I thought I had lost about a year ago. I used this notebook during preaching and other Bible studies to scribble thoughts about what was being shared from various teachers. The first entry in my journal was this verse and note that I wrote:

Psalm 34:17-19 The righteous cry out, and the LORD hears them; he delivers them from all their troubles. The LORD is close to the brokenhearted and saves those who are crushed in spirit. A righteous man may have many troubles, BUT THE LORD delivers him from them all.

God controls the breadth of my suffering, and the length of my suffering. "BUT THE LORD" has promised that He WILL deliver me and turn my sorrow into singing.

I will continue to lift you up to the Lord.

In His Grip,
Victoria, PA

Andrea said...

Wow Leah- I don't think I can even come close to writing anything that will bring words of comfort. But I KNOW that God can. Have you heard of Beth Moore's book, "Praying God's Word?" If you don't already have a copy, it's one that may help you through this intense season of grief. There are chapters devoted to different things we may face in life - grief and forgiveness are among the chapters. Beth includes and introduction and then many prayers of Scripture. One of the things she talks about in the "Forgiveness" chapter is the importance of forgiving yourself. I beat myself up on this point too often - finding it so hard to forgive myself for my mistakes and failures as I see them. But I've come to see, though I still struggle to believe it in my darkest moments, that forgiveness and believing in Jesus' saving work on the cross extends to myself as well. Beth articulates this much better than I can though :). Anyway, I've found this book to be helpful because you have the Scriptures all laid out and categorized for you. I've noticed that when we're in our hardest spots, it sometimes feels like too much to even search out the Scriptures that will wage spiritual warfar against the enemy's scheme.

Praying you will find the healing in God's Word and that He reveals specific Words which will enable you to forgive yourself and fill you with His presence.

Love in Christ,

Beth said...

Leah, I am a complete stranger to you and have only been following your journey for a short time now but you, Ryan and Christian have touched my heart. I haven't been through exactly what you are going through but my heart feels the pain of one mother to another.

Somebody once said to me that I could choose to let the circumstances of my loss defeat me and mar the memories I held close to my heart or I could choose to live and celebrate the memories.

The best words that I can give you are to encourage you to be easy on yourself. It has been such a short time and your pain is so fresh. Be easy on yourself and allow yourself this time to grieve. You have suffered one of the greatest tragedies we hope to avoid as a mother.

It will take time and only you will know how much time your heart will need and once you start to notice that you can breathe a little easier and the pain isn't so overwhelming then allow yourself to celebrate Christian's life. I love the saying that says life isn't measured by the amount of breaths we take but by the impact we leave behind. WOW, look at the measure of LIFE Christian left behind! What an impact! He may have lived only a few short days here on earth but he will forever live in the hearts of his amazing Mommy & Daddy and other family, friends & those whose lives he touched through your words here on this blog! Forever, that's how long he will be remembered, forever, his footprints will be stamped on our hearts!

Thank you for sharing your journey and your precious child with us. Thank you for trusting us with your deepest emotions and reaching out to us in your time of need. Lean on God, lean on your family and friends and lean on your cyber friends as well. It is ok to let those around you carry you for a while. Just rest, heal, love and live for your precious Angel!

lora said...

I have no answers, no advice. I have never been where you are.

But please know that I will be praying for you today.

May the God of all comfort be close to you,

Katrina said...

The situation that you are in is incredibly hard and no one knows exactly what you are feeling. While we have been told us that God will give us nothing more then we can handle sometimes what we are going through makes us wonder how we are going to make it until the next day.
God has promised that everyone can be a family forever. You will one day have the opportunity to raise Christian. For now while you are apart remember what you are living your life for and the goal of eternal life which will let you be able to see your little boy again.
Check out our blog

thetalbotts said...

Leah, your blog is a blessing to me. I could have written your words, especially on the description of Christian's last day. We experienced all of the unexpected hours of breathing struggles with decisions not to resuscitate all resulting in my precious daughter's life on earth ending in my arms. You see, my precious daughter Elliana was born with Trisomy 13 on 8/1/08, and she lived a miraculous 27 days. We are blessed.

My heart aches for you, yet rejoices that we serve a God who is bigger than death. Our Elliana & Christian are ALIVE in heaven, and we will spend eternity with them.

Thank you, Lord, for choosing Leah & Ryan to be Christian's parents. It was no accident. What a priviledge they have been given.

Psalm 111:2-4 How amazing are the deeds of the Lord! All who delight in him should ponder them. Everything he does reveals his glory and majesty. His righteousness never fails. He causes us to remember his wonderful works. How gracious and merciful is our Lord!