We told your grandparents and they were equally just as shocked and excited. You were a surprise blessing that no one saw coming… except God. We took you on a trip to California and Arizona with your sister when you were just the size of a lentil! You were tiny but your momma could tell that you were there. It only took a few weeks before my pants that I had just gotten back into didn’t fit anymore and my gag reflex started to kick in. We told our friends on the west coast about our news and they squealed, cried, and hugged us. Everyone was so excited about you…. our little surprise baby.
Your first ultrasound was perfect. It was too early to hear a heartbeat but we saw you and we cried. Your sister waved at the screen and we left the doctor’s office just like we did when I was pregnant with her. Thanksgiving came and we told family friends…. Christmas came and we talked about how this would be our only Christmas with just Evy. It was still so hard to believe that we would have a 6 month old at Christmas 2018. A week after Christmas, after our 12 week appointment, we told the world that you existed. Evy wore her “Big Sister” t-shirt and the internet rejoiced with us over you. You brought joy to people’s lives before you were even the size of an orange.
January came and our 16 week appointment went well. You had a strong heartbeat, but we didn’t do an ultrasound. Four weeks flew by and before we knew it, it was 7:30am on February 12th and we were frantically rushing to get your sister fed, dressed, and out the door in time for your 7:45am ultrasound.
We were so excited because this was the ultrasound where they were going to see if you were a boy or girl and put it in an envelope for us to open later with friends. The ultrasound tech was so sweet. She started scanning over your little body and was chatty at first… but then she seemed to be focused on her job and so we just talked to your sister and told her to wave to you on the screen. The tech said “You know, his little hand is covering his heart on the left side and so I’m going to step out and get your pictures for a minute and let him move a little”. After about five minutes, I looked at your daddy and said “Do you think something is wrong?” and he said “no” because he never wants me to worry. The door opened, the tech did a quick scan and then left again and said Dr. Troyer was going to come in. Dr. Troyer came in, sat down and basically shattered so many of our dreams within just a few minutes. The words that haunt me are “I’m concerned, your baby is very sick”.
She proceeded to go over your sweet little body and show us everything that wasn’t normal. I wasn’t crying at this point…. I was praying. Praying that whatever the tech saw was miraculously not there anymore… just anything to change what was happening. I was praying that this was just a precaution… maybe you just needed a heart surgery at birth… maybe this would resolve itself…. but she just kept going. Problem after problem. You seemed so perfect to me. Your daddy and I had just watched the ultrasound tech move all over your body just 20 minutes before and you looked so healthy and happy to us. We had no idea. We were shocked and scared. The doctor left and your daddy and I fell to pieces. Your Aunt Emy came to pick up Evy, and your Mimi met us in the waiting room just as we were leaving from the worst appointment of our lives.
We went home and your Grammy and Paw, Grandaddy and Uncle Joe met us there. We prayed for you… we asked for miracles… we thanked God for you… and we decided to open our envelope to see if you were a little boy or girl. Your sister pulled out the picture and we saw that you were a little boy. There were so many tears. It’s hard to explain what we felt that day… really that whole week. It was like living in a constant fog. I would cry to your daddy before bed. I cried in the shower. I cried when you moved. I cried when I thought about you being in pain. However, in the midst of the fog and the pain, God was giving us just bits and pieces of clarity in the chaos.
We decided to still have your sister’s first birthday party. We got up in front of our closest family and friends and shared that you were named James Michael Alsop… after your Paw, after my maiden name, after your Daddy and after our best friend. We shared that we were celebrating Evy, but we were also celebrating you… because we didn’t know how long we would have you and you deserved to be celebrated. I scanned our kitchen and everyone had tears in their eyes. It’s just so sad. The whole room felt heavy. But we celebrated and we prepared for the next step.
The next step were test results. The phone call came on Monday morning. Dr. Troyer called and shared that you are one special boy. You have Trisomy 21 which is most commonly known as Down’s Syndrome. Oh how I wish that was it. I wish you just had an extra chromosome. If you just had Down’s Syndrome and small complications, we could be prepared for surgeries and therapy and we would change our whole life to make your life easier. We would take you all over the world to get help if you needed it. We would do anything for you. We would move heaven and earth to allow you to live….. but the hydrops . . . the fluid filling your abdomen, the fluid around your heart and lungs, the hygroma fluid around your head, the heart defect that is doing permanent damage on your little heart, the abnormalities with your stomach and your intestines, the skin edema… it all seems to be taking away our chance to love you and care for you on this side of heaven.
Our 21 week ultrasound showed us that you’re a fighter. Your body is declining but yet your little heart still keeps pumping. The doctor told us it’s a miracle that you’re still alive inside of me. As your momma…. I had a hard time seeing your sweet profile on the screen… watching you put your fist in your mouth and yawn and wiggle while simultaneously being told that we probably have no more than 4 weeks left with you living inside of me.
Everything I had envisioned about you, everything I had planned in my head, everything I expected… none of it seems like it’s going to become our reality. I pictured having a newborn baby on the dock at the lake this summer…. Evy coming in and holding you in the hospital and hearing you cry… matching outfits for the thousands of pictures I would take of you and your sister…. putting another carseat in the minivan….creating another nursery….being a family of four…. it just seems so unfair. It seems like a mean trick to wake up every morning throwing up and knowing that I probably won’t get to see the beautiful light at the end of this journey like most mommas do. It’s devastating. It affects every part of my day… every part of my life… every part of my mind. My heart just seems to ache constantly…..
That’s not the end of your story, sweet boy.
We didn’t just have a devastating ultrasound and now our world is crashing down around us. We can’t stay there….. because the truth is, the story of your life is JUST beginning. This isn’t the story we wanted. This isn’t the outcome we wanted….. but this is what I know to be true.
James Michael, I know that you are not an accident.
You are not just a “random” chromosomal abnormality with a lot of extra complications… even though that’s what our medical records will show. You are not an unfortunate pregnancy that we are just going to try to forget. You are not a part of our life that we can’t bear to think about and will hide from our other children. You aren’t a story that will never be told. Your sweet life has purpose. I know this because you were our surprise…. the almighty God is the one who decided that you needed to exist inside of me.
My sweet boy, you are a miracle.
You have made your momma cling to Jesus more than any other time in her entire life.
You’ve made strangers question where they stand with their relationship with God and what they believe about eternity.
You’ve made thousands and thousands of people come together and cry out to God for our family.
You have given me a new perspective on what it means to be a momma and what it means to love.
Your life is showing a broken world that God doesn’t mess up and create accidents…
… Because if your sweet life has such deep purpose and you have never breathed one breath, how purposeful then is every single life on this earth?
How can someone hear about your life and yet think that God doesn’t have a plan for them? If God is using your beautiful, short and precious time on this earth to change lives and make an impact, how can we not look at our own lives and expect that God wants to do the same with us?
When I’m by myself and I find myself feeling overcome with sadness that I’m going to miss all of the normal parts of being your momma, I’m reminded that you were never mine to begin with. That’s a hard reality to grasp as a mom. I want to believe that I’m the only one who can take good care of you….. that you need me more than anything else…. that I can comfort you and provide for you. But the truth is, your Creator, the one who knit you together in my womb and who has known your story long before we ever took a pregnancy test is the great healer. If you never experience the pain of this earth… never have to use your strained lungs or feel the weight of gravity on your fluid-filled skin, I will have such a peace knowing that you are in the arms of Jesus where there is no more pain. Your precious body won’t be full of hard-to-pronounce medical issues. You will be whole and you will be completely healed and more safe than you would ever be here on this earth.
Picturing the Lord taking away your pain gives us peace…. and it forces us to think of the beauty of the Gospel.
Thank you Jesus for dying for our broken, sinful world and bridging the gap between us and a perfect God. Thank you for saving us and allowing us to have a place in eternity, but also giving our lives a PURPOSE here on earth. Thank you that our baby Boy’s life isn’t going to just be 5-7 months of miserable ultrasounds, tears, and a delivery that no mother wants to face. Because of the hope of heaven, I can face the pain of laboring and delivering a baby without a heartbeat. Because of the Gospel, we’re still able to say God is good… because the victory has been won. Good trumps evil and darkness and sadness over and over again because of the Cross. It is well with our souls…. Jesus, if we never get to raise our baby and you want to use his life to bring more and more broken, lost people closer to the truth of the Gospel… it is well. Let it be. We’ll do that…. we’ll share this little boy’s story for the rest of our lives here on earth. We’ll share how our marriage survived this… how we became closer because we walked through a parent’s hell together….how we can still say you are good… how we can still have hope in such sadness… how life continues after loss and how pain isn’t victorious over those who have committed their lives to you. Have your way Lord Jesus.
So baby boy, where does this leave us?
You’re still here.
Tears are streaming down my cheeks as I write this and feel you kick and move inside of me and nothing seems wrong. You seem so normal to me. Your heart-rate is strong but your poor body is failing and we are supposed to have another 15+ weeks to go. The doctors are telling me that one day when we have one of our bi-weekly ultrasounds, there just won’t be a heartbeat. I’ll be admitted to the hospital and will endure one of the scariest days of my life. But that will be my last role as your momma here on this earth and I’m going to do it as best as I can. I want to see you and hold you and so does your daddy. We want you to know that no matter what happens…. whether our miracle happens on this side of heaven or not….it’s an honor to be your parents. It’s a privilege to carry you as long as God allows me to. I sometimes let the pain steal this truth from my heart but somehow God always brings me back to it.
I realize that no mother would want this. No one would choose to walk through this. Only a few women have the painful privilege of carrying a precious baby past the point of a miscarriage and into the still birth phase. I’m one of them. I never thought this would be me…. but there was also a time in my life when I never thought that I was cut out to be a mom in the first place…. and here I am falling in love with a baby I’ll probably never even get to raise. God does amazing things in our lives and He sees the big picture.
He’s currently writing a chapter of our story that is breaking our hearts. We want more than anything to bring you home from the hospital and watch you grow up with your sister…. but His plans are greater than ours. One day we’ll be able to see the full book and how this chapter fits into how He used our family in the grand scheme of eternity.
I want you to know that your life matters to us…. every moment of it. We will love you and miss you for the rest of our lives. There will always be a part of me that longs for you to be here with us and I have a feeling that even if God blesses us with more children, no matter how many we have, we will always feel like someone is missing. You will not be forgotten, sweet James. We’ll start to heal from the pain of this season but we’ll never be “over” you and we’ll teach our other babies to celebrate you. Who knows, the story of your life may be the very story that allows Evy and future children to grasp the beautiful picture of the Gospel and there is no greater gift than that.
I praise God for you little James. We love you so much.
For those of you reading… there are two songs that most adequately describe our hearts right now as we navigate this hard season. One is Mercy Me’s “Even If” and the other is a “I Will Carry You” by Selah. If you find yourself in a tragic season like ours, Angie Smith’s book “I Will Carry You” has been so helpful for me the last two weeks. This song was written for her baby girl’s funeral.
Our dear friend Jill took maternity portraits for us the week after we found out about James’ diagnosis and I can’t tell you how thankful I am for these. I didn’t want to do them. No part of me wanted to get dressed up to take portraits after receiving our news…. but these images are such a gift to me and I will cherish them for a lifetime. Thank you Jilly.