In memory of my first born

As I sit down to write I don't know what words will come or even if I should try to put into words a story that has been kept only in my heart for so long.

May 26th of this year marked the birthday and passing of my first born, Samuel. He would have been 8 years old this year which in itself seems almost unbelievable. In some ways my life has come so far and changed so much since then that it seems like a lifetime away but on the other hand I can't believe it has been so long since I held him last.

On his birthday this year I got out the memory box I had neatly hid away for several years. I opened it, held the blankets that held him, looked through photographs, and read through my old journal. (I also read through each card I received and am amazed again at the outpouring of love from family, friends and two church families...thank you) We also have a home video of him being born and us meeting and holding our son. I had never watched it...in fact I had forgotten that I had it. I guess it took me 8 years to be able to 'go there'. It was amazing to once again see him, hear him and watch those tender first moments. Needless to say I bawled like a baby the whole time . It wasn't a bitter knawing sadness like it would have been years ago , it was a beautiful soft sadness of remembering a precious life. So after 8 years I revisited that time and I feel so blessed not only to have come through that and to have 3 beautiful children who call me mommy now...but to have been blessed with that special little boy too. I can honestly say now that I am thankful for that experience and wouldn't erase it from my life. With time comes a broader perspective and an appreciation for the things in life that have taken me out of the shallows and into something deeper.

I was one of those kids who dreamed of being a mommy, I mothered anything that would stay around long enough for me to mother. I waited my whole life until it would be my turn to have my own baby. I didn't wait long either. Nathanael and I were married very young , I was barely 19...I gasp now at the thought. Because we were so young and uneducated and broke we waited for over 3 years to start trying to have a baby. We got pregnant right away and were thrilled, it was the fall of '99.

Then Y2K happened. Actually Y2K turned out to be nothing as far as world wide catastrophe goes but the year 2000 meltdown seemed to happen only to us. In January, unexpectedly I lost my job..which was devastating to my pride and our pre-baby financial plan. Then, one thing after another seemed to pile up on top of the burden....engine done, transmission toast, medical bills, unexpected back taxes owed. I was so discouraged that I was afraid to start the car or open the mail. The financial rug was pulled out from under us leaving us struggling for the basics , but we still had what was important. We had each other and a baby growing inside of me. Then the other rug was pulled.

The next month I had an appointment with my midwife. I was just under 20 weeks when she discovered an irregular heartbeat, up until then it had sounded fine. We were reassured that it could be nothing but we were scheduled for a high resolution ultrasound just to make sure. I was nervous that day but naive enough to think that nothing could be wrong ,after all I was 22 yrs old and a picture of health. We looked forward to having an ultrasound and getting to see our baby again.

It wasn't very long into the ultrasound before the mood changed , the talking was hushed and more people were called in to view the screen. We learned that our baby had a severe heart defect and some possible other signs that could suggest a chromosomal abnormality. He explained that our baby "was not compatible with life" and that we could have an amnio if we wanted and that an abortion would be our best option. The next day we went for the amnio (a long needle stuck in my belly to extract amniotic fluid..not fun). The dr. we saw that day was much more hopeful and treated us like parents of a real baby with a really tough situation on our hands. He went over all the possibilities and the best and worse case scenarios with us...all of the scenarios sounded worst to me. We went home terrified but hoping that it would only be a heart defect or even Downs Syndrome with a heart defect ....something we could at least attempt to fix. We didn't care if our baby was "perfect" or faced surgery we just wanted him to have a chance to live. It was weird to be praying for something that most parents dread...and Iwould have dreaded too before my perspective was turned upsidedown.

After an eternity of waiting I got the phone call that made the room spin and shattered what was left of my dreams. She informed us that it was Trisomy 18 also known as Edwards syndrome. It is one extra 18th chromosome. Essentially the blueprints of DNA had an error that duplicated itself throughout his tiny forming body. The most obvious problem being the heart defect. The screaming going on in my head started to drown out the information she was giving me but I did hear the words 'a boy' and the words 'always fatal'. 90% of babies die before their first birthday. What was left of my world came crashing down in an instant. How could this be happening, what was I supposed to do now? It was suggested by our midwife, who knew better than to suggest a "dilation and extraction" (rip and kill procedure) that we "induce labor early" at 20 weeks gestation and just get the inevitable over with. If faced with the option of aborting a baby with a disability I would have turned it down flat but the idea of inducing early was such a grey area to me. The outcome would be the same either way. I was and am undeniably pro-life ...but for me there was no option of life . I had to choose between the horrible and the terrible....death now or death later. We took a couple weeks to think about our options and really just come to terms with the diagnosis. We decided that, even though we accepted that our sons life would be short , I would carry him and allow him to live as long as possible. We felt that it wasn't our call to make. I didn't create his life and I didn't want to decide when it would end. My husband was so supportive of me continuing the pregnancy and was totally in love with his son. We chose his name and started calling him by it. Since this was his life there would be no waiting to name him or find out his gender. He became Samuel to us instead of just a pregnancy gone horribly wrong.

That left me wondering how do I go on being pregnant when I am already grieving for this child?
Am I supposed to take my vitamins, go to prenatal appointments, and do all the things mommies do to have healthy babies? Am I supposed to take pride in my growing belly, take joy in the baby moving and growing inside me? One day when I was feeling particularly sorry for myself Samuel kicked me really hard as if to say "Hey , I'm still alive , I'm growing , this is my life...enjoy me". From that moment on I treasured every night I lay awake with him banging around inside me and took joy in watching him grow. His life would be inside me and I was going to celebrate and treasure that life.

I was carrying a baby I knew I could not keep even though I couldn't even dream of ever being separated from him. I didn't know what it was like to wait in giddy anticipation, to decorate a nursery , to shop for baby clothes. My body was preparing for a baby and I had all the desires to nest and prepare but instead I was making arrangements with a funeral home and and having burial clothes made for him. My husband put the cradle he was building on hold and started building a beautiful little urn. The best I could do for him was mother him in the only way I could by honoring his short life and honoring him in his death.

As my belly became enormous I was faced with all the attention , questions and advice a pregnant woman typically receives from strangers...that was really hard. I usually just gave them the answer they wanted to hear ( yes its my first, yes I'm excited and I'm expecting a boy)..unless I was feeling particularly cruel in which I would just tell them "actually my baby is going to die" and watch them squirm and run away. Some of the worst ones where the usual ...and most innocent.

"Labor is hard but once you hold that perfect baby in your arms its all worth it"...oh really,I guess I'll never know. I wonder what labor will be like for me?

or " It doesn't matter if its a boy or a girl as long as its healthy"....but what about the babies who aren't healthy? are they somehow of less value ..would you love him any less? How about "it doesn't matter if its a boy or a girl , or has ten fingers and toes, this baby is a gift from God ". Sometimes children who are considered less than perfect are the biggest blessings and teach us the most in life.

I wouldn't have cared if my baby was "normal and perfect" by the worlds standards I would have taken him home and loved him like the gift he was. But I didn't have that option. All we could hope and pray for was that he would be born alive and we would have a chance to love him a little before he left us.

One night I was laying awake with major anxiety and panic over the thought of my baby, who was nestled snuggly in my womb, being taken from me. In that strange place between sleeping and waking I dreamt I was holding my baby wrapped in a blanket. Then someone came for him. This person was magnificent, beautiful,and exuded such love as he stretched out his arms to receive my baby. I choose the word "receive" because it was voluntary on my part , there was no taking or snatching away from me...and I felt an overwhelming sense of peace. Such an obvious contrast to the anxiety attack I had been previously having. I handed over my baby as a mommy would hand her baby to loving doting grandparents or to his daddy. Perfect confidence and pride, no doubt that he was in good hands. I knew he was loved perfectly and completely by the one who now held him. Then as they turned and disappeared that feeling of peace remained instead of the panic expected. I held onto that peace throughout the night as I slept better than I had in weeks. It struck me the next day that this was not an ordinary dream. The feelings that came with it were too real and unusual. It was a gift. It was going to be OK , Samuel was going to be OK. Every other dream I had had up until that point involved terror , losing and searching....anything but confidence and peace.

The pregnancy was difficult physically as well as emotionally. I was carrying a lot of extra amniotic fluid due to the baby not swallowing properly. This translated into a lot of discomfort, constant contractions and a very big heavy belly. My body had had enough at 33 wks and I went into labor, by then I looked every bit of 40 wks pregnant. The labor was very long and very hard. Because the baby was surrounded by so much fluid, it wasn't forced down with each contraction like it typically would have been , also it was a first time labor for me which is often longer. I remember so vividly the sudden panic and terror that I felt when they said it was finally time to push. I knew that with each push I was bringing my baby closer to his death. I knew he could not survive without me oxygenating his blood for him. I knew that ,instead of it meaning the worst part was almost over ,that the pain was only just beginning. I wanted the labor to be over but my mind screamed NO, I need more time. I wanted to stop the train and go home. After 48 hours of labor , on May 26th 2000, we welcomed our first son into the world.

Samuel was born at 33wks weighing 2 lbs 10 ounces. He was born alive which was an answer to many prayers. I had never seen such a tiny baby. He had a cleft lip which can be common with trisomy 18. That really threw me off and my own lack of instant acceptance ended up being a major regret and source of guilt in the coming months. Of course internally was where the real problems were. We held him, kissed him , talked to him and looked in awe at every part of his body. His long legs, his light brown hair, his perfect little toes. We invited members of our family to come in and have a chance to hold him and be a part of his life. I felt very protective of him but I wanted him to be a part of the family that also loved him and I think in a way I thought it legitimized him to have witnesses to his short life. We had decided against anything but comfort measures before hand...not that we had a choice in the matter. Putting him on life support or something would have just been prolonging the inevitable and the hospital wouldn't likely have complied. I have reviewed those initial decisions so many times over the years...would something have made a difference? Could we have done something more for him to give him and us more time? Maybe, but if there was anything that we could have done at the time to save him we would have. The feeling of absolute helplessness as a parent was horrible. As our time with our son grew short we asked to be alone with him. The nurse kept checking his heart beat until she gave us the sad head shake and we knew it was over. I had previously worried what the end might be like for him ,and us, but he passed away very peacefully in our arms. We had prayed for him to be born alive and we were blessed with over an hour with him. It will never be enough time, but is was more than we had hoped for. I have never, even for a moment, regretted our decision to carry him and support his life until it was his ordained time to go. I can't help but think if I had chosen to end the pregnancy the "what ifs" and regret would still be nagging me and causing me pain. I'm so thankful that I am spared that. I am so thankful that I know without a doubt I did everything I could for my son. In his 8 months of life nestled under my heart and in the 1 hour of life in my arms of, he experienced his mothers love.

We dressed his body in a tiny gown and homemade sweater then wrapped him in the quilt his Grandma had made for him. The quilt had the words "Samuel is loved" sewn into it. We wanted the hospital and funeral home people to know this was our precious child, he had value, he was loved and would be missed. I think the hardest thing about that evening was changing rooms. We had to leave him laying quietly in the hospital bassinet and walk away. My arms ached to be holding him still, my heart broke and every instinct in my body screamed against what I had to do. We said our goodbyes and went to our room for the night, the room we should have been sharing with a new baby. The next morning I walked out of the hospital with empty arms and an empty womb. The world went on as if nothing had just happened and by all appearances the baby I had carried inside me for 8 months had never existed. I was a mother with no baby. There is no name for that.

In the days following, my body prepared to nourish a baby that was no longer there. I wasn't prepared for all the physical longing I would have for a baby. My arms literally ached to hold him...it was like a yawn that couldn't be satisfied or an itch I couldn't scratch. I knew my baby was gone but my body hadn't got the memo. As tears ran down my face, milk ran down my stomach, it was like my whole body was crying. The physical pain of engorgement was unbearable and the emotional reminder of what I was missing was constant. On top of the intense sadness I had a constant feeling of anxiety and panic...a feeling like I had misplaced something or that something very valuable was lost. I felt like I was going crazy. I remember at one point wandering from room to room in my house with panic rising, feeling like I was forgetting something....only to figure out the thing I was 'forgetting' was my baby and he wasn't coming back. Once again my mind had to remind the rest of me that there was no baby. The mothering instinct inside me just couldn't accept what my brain already knew. That feeling of unexplained anxiety followed me for several months.

We were assured, despite our fears otherwise, that Samuels problems were not genetic and that our chances of having another baby with Trisomy weren't higher than anyone else's. I then became obsessed with replacing that which had been taken from me and resuming the process that had been so unaturally cut short. If I could have popped down to the local store and bought myself a baby I would have. Month after month I hoped and obsessed that I would again be pregnant. I felt it was the only way to lessen the pain ..to fill the aching void. With each passing month I drifted deeper and deeper into depression and had I not been trying to get pregnant I would have done anything to numb the pain. I forced myself to eat only because if I didn't it I might not get pregnant. I was stuck in a dark hole and had no way out. I needed the pain to end, one way or another.

I was so sure that because I had remained faithful and had gone through loosing my baby that God would have rewarded me with another pregnancy right away..and probably even twins just to make up for it. How little I knew about how God works.

Throughout the year I could see God at work, the little miracles, the little blessings and the outpouring of his people. I had lost my job but God had replaced it with my dream job working at the World Vision US office , I was surrounded by people who loved the Lord and served him everyday. I had a couple close friends ,who had experienced their own losses ,come along side me in my grief. My son , according to the Drs. would not be born alive but he lived for over an hour. The Dr. who examined him after his death said that he had already gone into congestive heart failure in the womb and that he was amazed that he had lived at all. If I had not gone into labor when I did he would have died inside me instead of in my arms. A small mercy but a blessing just the same.

Over the next several months God took me on a journey of healing that included a lot of rage, questions and grief on my part, but He never turned away from me as I poured out my heart to Him....and I can't remember a time when I turned away from Him. After many months of wrestling, I discovered something completely unexpected...contentment. I can't explain the change other than it was from God. I came to the place where I could truly say that He was enough...and not in a begrudging way. I became so truly humbled and grateful for what He had already done for me, his gift of grace and salvation, that I could honestly say I was content. It was well with my soul. I allowed Him to fill that gaping hole in my heart. Yes, I longed for a child but His sovereignty gave me a confidence that whatever happened ,or didn't happen, I was in His loving arms. He had a plan for my life, even if I couldn't see it, and Samuel was part of that plan.

I felt a sustained peace and joy that I hadn't felt in almost a year. In contrast to the pain it was that much sweeter. What a welcome relief! There were still sad days or moments of anxiety when I would be reminded of what I was missing but with it also came comfort. My circumstances hadn't changed but my heart had. I felt in a way like Jacob who wrestled with God and when it was over he called the place Peniel, meaning I have seen God face to face.

In the process of my pride, my security, my purpose, and my plans being stripped away I found myself face to face with God - not in defiance but in brokeness. No distractions, nothing to hide behind, no delusion of self sufficiency, no illusions of control, no desire for stubborn independance...just my God and me.

I wrestled with everything I had in me and then when it was over I laid it down at his feet.

Then with my arms empty and my hands open, he picked me up and stood me back on my feet. Since I had opened my hands and released control of all I had been fiercly clinging to, my hands were open to receive the blessings he desired to give me.

He had allowed these things to come into my life for a purpose. I don't believe he causes disease and suffering but he can use them for His glory ....and bring beauty out of the ashes. I know that nothing comes to me but that which has already been through the filter of His love. God is more concerned with my growth and maturity than he is my immediate comfort. I realize now the difference between clinging and cherishing. I will cherish the blessings that come into my life but I will never cling to them and wrap my little fists around them and shout "Mine!". I will praise my God when he gives, and I will praise the same God when he takes away.

I allowed the Lord to truly heal my heart that Dec. 2000. That was my year 2000 from start to finish crammed into a blog post. What a year and what a way to start out the new millennium! Had I known what lay ahead that historic new years eve, I would have spent less time stockpiling food and I would have spent more time preparing myself spiritually for the road ahead. Unfortunately, the storms in life come without warning and often when we least expect them. That midnight phone call, that moment a lump is discovered, that bone-chilling diagnosis, an unfaithful spouse discovered....the world you've constructed comes crashing down around you leaving you rocked to your core. The storms will come at some point. How we withstand the gale has a large part to do with WHO are anchored to and how sturdy that anchor is before the waves start to pound.

God had a little surprise for me though as we entered a new year. ... my daughter was born nine months later on August 31st! 2001 was off to a much better start.

Samuel will always be my first born...my first son. There is a quiet natural awareness that our family is not quite complete and won't be until eternity. Although his brothers and sister have never met him they know who he is and where he is and I pray they will meet him someday. I know I will hold Samuel again. Sometimes my heart gets a little homesick for my eternal home when I think about it. I look forward to the day that my sweet Jesus will take me in His arms and say "well done, good and faithful servant...you have finished the race!" Then, I will see my first born. There will be no more missed birthdays , tender moments and milestones...only perfect fulfillment. I will see the eternal person he was created to be , without the intrapment of an imperfect body, just him flawless and whole. If he's anything like his little brothers ,he's probably climbing the highest tree and and calling to the angels to watch him as he shows off his new tricks. That makes me smile.


Grandpa Steve said...

Carla, this is so inspiring. God will continue to sustain and reward you as you continue to trust Him. Colleen suggested you should publish these thoughts. As heart wrenching as it is to read your expresssive writing it is also uplifting and edifying.

Love and hugs to you, Nathaniel, Samuel,Roman, Aili and Silas.

Steve & Colleen

lanagummeson said...

My friend,
I have not known you until this moment. Thank you for entrusting - not the facts but the fullness of those moments you have endured. Satan wants us to believe we are alone - you are casting down that lie. Thank you for taking the risk to get intouch with these depths. I am weeping as I read. I wish I could have met your Samuel, I'll pop over to your mansion in heaven for a visit sometime...

Taylor said...

It is as if I could have written this post myself over the past year. Thank you for sharing your story... for giving me hope. I'm so sorry that we share the loss of our first son, but I am grateful that one day, we will see them again because of Christ.

Shauna Archer said...

From Hannah's prayer in 1 Samuel in the Message - "For God knows what's going on. He takes the measure of everything that happens." Bless you for your faithfulness through pain and your transparency in sharing. Beautiful. Just beautiful.

stephanie garcia said...

What powerful words, these that record the deepest heartbreak and yet God's faithfulness. Thank you for opening your heart and sharing Samuel with us.

God's Girl said...

With my heart aching for you and with tears, I want to say thank you for sharing your story. thank you for standing on God's faithfulness and perfect love through the hardest of times.

Your love for the Lord has blessed my heart today. Thank you!


Hilary said...

Carla, I don't even have words. I'm so overcome with emotion as I read your story. God has brought you and your family so far and it a true blessing and honor to have read about it. Thanks so much for sharing your heart.

You posted on my blog asking about what other things my daughter has been diagnosed with; here's the list: hypopituitarism (born without a pituitary gland), hypothyroidism, hypoglycemia, enlarged liver and hardened spleen. I've forgotten the medical names for the enlarged liver and hardened spleen.

Emily said...

Absolutely incredible. As I miss my girl and contemplate our journey three years ago this June, this is precisely what I needed to read this morning. I feel as if I could have written much of it myself. What a precious gift from the Lord to be reminded that we are not alone, that He is good, that His plan is perfect, and our little ones are home and healed. Oh what a beautiful day it will be when our work here is done and we see our babes again. For now, this is a beautiful life, too, isn't it? Thank you from the bottom of my heart for sharing your Samuel here, for God's glory. He's beautiful.

CZak said...

I came across this posting by accident . . . I was actually looking into adoption. I am no one to you, and yet I will never forget your story as long as I live, it has touched me profoundly. Your courage and faith in the face of such despair and tragedy is overwhelmingly inspirational. I have been so sad and feeling so hopeless . . . I have been unable to have my own baby, and have suffered 2 miscarriages which left me devastated . . . But what you have gone through is beyond anything I could imagine . . . You remind me to praise God in the midst of my despair, and that He truly does have a plan for all of us, and that he truly can and does use anything for His glory . . . and to lay down my burden at His holy feet . . . God bless your Samuel and the rest of your family . . .

Anonymous said...

Dear Carla, I thank you kindly for sharing the story of Samuel with us. Through your words we are witnesses to the greatness of God's love, the unselfish never ending love for a child. You are blessed to have held that precious babe and will hold him again in heaven. I cried as I read your words, as they are profound.

My niece was born June 24 2010 against all odds - incompatible with life (?). Olivia has full T18 but has baffled the doctors. She is thriving and every minute we have her with us is a gift. Olivia is not incompatible with love. I hope more women have the courage to allow a child with T18 to live, whether it be for an hour a few months or a year. I commend your courage. May the good Lord continue to bless your family. Please keep sharing.

Jenn said...

Wow Carla, thank you for sharing!! I could relate to everything you posted! I found myself crying because you wrote just what I am going through. Just from glancing at your blog, we have a lot of similarities besides our awesome sons waiting for us in heaven (same due dates, wow!) Thank you for reading my story as well. I look forward to getting to know you!! God bless!!

Louanne said...

this had me crying. thank you so much for sharing your story. I love that you guys honored his life with the quilt and everything else.

god Bless you.

ps. I worked for WV for a brief time in between our adoptions and have been a sponsor for 17 years. Love the organization and love the people.

Jennifer said...

Thank you for sharing this story. I am not yet a Mommy, but I am hopeful to be one soon. We so often take for granted the gift of life that we just expect to be given. Samuel's story reminds us that life is precious and that we should never take it for granted. You have a beautiful family, and I wish you continued peace and happiness.

Anonymous said...

<3 i stumbled across your blog (a God thing, really) my firstborn son has been w/Jesus since 1990. he stayed for 13 days. i am now a mom to 6, soon to be 7, as we are adopting a little boy w/Ds from overseas. so glad i "stumbled" across you. heart swells and an encouraged heart over here. thk u for sharing :)