“God when You choose to leave mountains unmovable… Give me the strength to be able to say it is well with my soul. I know you’re able and I know you can, save through the fire with your mighty hand but even if you don’t, my hope is you alone. I know the sorrow and I know the hurt, would all go away if you just say the word but even if you don’t, my hope is you alone.” -Even If by Mercy Me
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
I get comments all the time now about how well I’m handling everything, and how strong I am, etc. I feel the need to dispel those ideas and just say that I’m floundering around in these struggles and feel lost half the time. As nice as it would be, there is no magic rule book about how to deal with the grief of losing a baby or the fear and confusion that come when you learn your child will be born with Down syndrome.
Lots of people want to know how I’m doing. So here is an honest and raw update of how I am truly handling everything that has been going on. The biggest thing I’m fighting in myself right now is fear and worry. As soon as I found out that our sweet baby girl (that we have officially given then name Ivy – middle name to be determined!) had a bonus chromosome, I immediately went into research mode. My mother-in-law had to chuckle when I showed her the binder of information I had printed out and compiled from various sources! While information is necessary and so helpful, it has also given me quite a lot to worry about.
Because Ivy’s 47th chromosome is present in every cell of her body, the umbilical cord, and placenta, there is a huge list of possible complications it can cause. Of course they are all just ‘possible’ but when you give the whole list a glance it is very overwhelming. We are lucky enough to feel fairly certain that Ivy’s heart is in good shape. The echocardiogram we had last month did not show any abnormalities. The doctor said they will repeat the echo after she is born because not everything can be seen while she is in-utero, however any major problems would have shown themselves by now. The doctors see a few signs that make them wonder about a condition called esophageal atresia. With this condition, the esophagus does not attach to the stomach and may or may not have an attachment to the trachea. Unfortunately, they won’t be able to tell for sure whether this is the case until she is born. That leaves me with a lot of fear about the possibilities of NICU time and surgery before she can leave the hospital. I also have hydramnios which just means excess amniotic fluid. This can cause preterm labor and adds the danger of cord prolapse. And as with all babies that have Down syndrome, there is a chance that the placenta could start to fail as we get into the third trimester. At this point, my doctors are monitoring everything very closely. I go in for ultrasounds every other week to check on Ivy’s growth and my amniotic fluid level. Starting at 32 weeks (which is only 2 1/2 weeks from now… what?!) I’ll add twice a week non-stress tests to those ultrasounds to monitor any contractions and how Ivy’s heart rate is handling pregnancy! I can say without a doubt that Ivy and I are receiving the best possible care and that helps ease my mama heart!
Through all of this fear and worry, I am being stretched. I’m continuing to grow and learn. I don’t subscribe to the belief that ‘God only gives you what you can handle.’ To me that paints a picture of a God who is standing up in heaven judging each of us for our strength. When he deems us ‘strong’ then he hits us with something devastating or hard because he knows we can handle it. That is not the God that I know. I don’t believe God is up there coldly deciding which babies won’t live their life on Earth or which babies will be born with chromosomal abnormalities or health conditions. What I do believe is that God grants us his presence and strength when we are weak. I believe that despite the outcome, God is with me. That has been a huge revelation for me. When I first learned about the possibility of a Down syndrome diagnosis for my baby girl, I struggled with how to pray about it. I couldn’t really pray that she didn’t have it, because Down syndrome is present from conception. There is no ‘healing’ that can be prayed for. So I had to start praying that no matter the outcome, that God would work in my heart and give me strength. That was tested even further when we went for the echocardiogram to look at Ivy’s heart. I found myself wanting to pray solely that her heart was whole and perfect. But then I took a step back and realized I was only praying for an outcome again. Yes, I desperately wanted her heart to be healthy, but what if it wasn’t. Would that mean that God ignored me? I started to pray differently again. That no matter what her heart looked like that I would trust the Lord. So as we face these other potential health complications and fears, I’m working (because believe me it is still a struggle) to continue this type of prayer. “Lord I pray that I’m able to carry Ivy to term. I pray that my placenta and the cord continue to nourish her with what she needs. I pray that she does not have esophageal atresia or any other health issues that will put her in the NICU or require surgery. But God EVEN IF any or all of these things do not come to pass, please help me to keep my eyes on you. To remember that you are my strength and my hope.”
So how am I doing with Ivy’s Down syndrome diagnosis? I have definitely come a long way over the past six weeks. There were a lot of emotions that came with the diagnosis. I won’t lie and say that there wasn’t some level of grief and sadness over the loss of the ‘normal’ child I had envisioned adding to our family. I thought about all the ways that our lives would be different. I felt overwhelming sadness thinking that my sweet baby girl would struggle more in life, might experience cruelty and discrimination because of her differences. I also won’t lie and say I don’t still have moments where I think about these things. However, I am peeling back the layers of those feelings and realizing a lot of things about myself and those thoughts and feelings. What is my vision of ‘normal’ and why do I care about that. What child is actually ‘normal’? I have a daughter who is ridiculously smart but really struggles with emotional intelligence. Is that ‘normal’? I have a sweet, sensitive son who was in speech therapy for a year and a half because he spoke late. Is that ‘normal’? I’ve taught hundreds of students over the past ten years. Are any of them ‘normal’? Ivy will be a beautiful child of God. She will cry and laugh. She will want love. She will misbehave. So what if she meets her milestones later and requires extra therapies? So my perception and thoughts about the word normal are definitely changing. In many of the books I’m reading they use the language ‘typical’ which I like a lot more than ‘normal’! And when it comes to our lives being different, wouldn’t things have changed a lot adding a third child no matter what? I’m not sure I have a lot to say about the sadness I have when I think about Ivy’s potential struggles. However, I’m trying to take that one day at a time. All children struggle. I have two children who both have struggles of their own. Ivy may have more or different struggles than Zoe and Eli, but she will also have an entire community of people who love her and want what is best for her. She will have a God who created her in His image and loves her more than even I do (which blows my mind!)
So while I do have my sad moments, my moments of fear and feeling overwhelmed, I’m doing ok. I cannot wait to meet this precious girl who has done so much to stretch me and help me grow in her short 30 weeks of life inside of me. I definitely hope to keep her cooking for several more weeks before I meet her! Look at this precious face… I can’t even handle her button nose and sweet kissable lips. I promise that I’ll share snuggles ❤
The Lucky Few: Finding God’s Best in the Most Unlikely Places by Heather Avis
This book is written by a woman who struggled with infertility for years and then decided to adopt three children with her husband. Two of those children have Down syndrome. It is an absolutely beautiful book about how sometimes when we’re thrown off the perfect path we’ve imagined for ourselves, God shows us how much more beautiful things can be!
Bloom: Finding Beauty in the Unexpected – A Memoir by Kelle Hampton
In this book, Kelle is very raw and honest about her experience giving birth to her second born daughter Nella, who had a surprise birth diagnosis of Down syndrome. She writes beautifully about finding beauty in the unexpected and learning that a mother’s love knows no bounds!
47 Strings: Tessa’s Special Code by Becky Carey
This is a children’s book written by a mom of a sweet little girl Tessa who has Down syndrome. She says that it was inspired by telling her older son about Tessa’s diagnosis. It is written as a letter to the brother. We used this book to introduce the idea that Ivy has Down syndrome to Zoe and Eli. It is written in very kid friendly terms that helps them understand just enough of what life will be like with our sweet Ivy!
Your Loved One is Having a Baby with Down Syndrome
This is a fabulous booklet published by DownSyndromePregnancy.org. It is a great resource for people who want to know more about Down Syndrome and how to support us or any other family who is having a baby with Down Syndrome! You can download it for free!