I'm so grateful to my fellow adoptive mama, Linnea, for her eagerness to share about the journey to her daughter, Sylvia...a journey with the unexpected news of Mosaic Down Syndrome. I sobbed when I read this the first time; I was freshly reminded that I am beautifully, wondrously made in God's image, and He loves me more deeply than I can imagine because I am His daughter. I think this is one of the most stirring and beautiful pieces ever posted on this blog and I am honored to share it with you!
One of the biggest lessons I’ve learned through the adoption process is how to give up control. When we first thought about adopting, I imagined a healthy young teenager who found herself with an unplanned pregnancy and needed to choose a good home for her child. A baby would need a home. We wanted a baby. Win – win. We understood that if we were willing to set aside any one of the qualifiers in the most demanded “healthy, white, infant” category, there were many babies that needed homes. So, we started our home study and our search for the infant daughter of any race that we felt God had saved space for in a hearts and home.
Part of the adoption process typically involves agencies asking parents to look through a grocery list of issues that could be in play in a potential adoption situation. We were to sit in our living room and put check marks by what we were ok with our baby dealing with. Blindness, mental illness, Down syndrome, alcohol exposure, cocaine, smoking, conception through rape, history of heart disease, brittle bone disease, asthma, cerebral palsy, cleft palate…. The list goes on and on. We believe all life is sacred, and every child should be wanted. Does that mean we need to be ok with all this stuff? What are we signing up for? What are we requiring of the children we already have? If I had a biological child who had some special needs, I wouldn’t worry about whether or not I should “take them on.” But, we need to be wise, right?
After wrestling with each concern, we determined that we were open to anything correctable (cleft palate, minor birth defects, etc.) and we would discuss drug/alcohol exposure on a case by case basis, but we would avoid situations with lifelong disabilities at play. We reasoned that we should allow margin for unforeseen needs to arise instead of maxing ourselves out at the start.
We presented to a lot of expectant mothers. The process of presenting involves having a profile book (basically a family scrap book) shown as one of 2-15 options for an expectant mother to consider for her adoption plan. We were not chosen many times. I stopped counting in the teens. If there were so many babies that needed homes, why did I feel like we were competing for babies? At that time, God impressed on me that being an option that doesn’t get chosen in an adoption plan is a ministry in and of itself. I tried to rest in that, but, let’s be honest. I hated the wait. I felt rejected. I wanted a baby.
After 6 months of presenting and not being chosen, we learned of a new situation. There was a family history with some risks and some difficult circumstances throughout the pregnancy. At the time, I was studying Gideon and how God had asked him to drastically reduce the size of his army so it would be clear who was winning the victory. At that time, I felt like God was telling me to reduce some of the control I felt I needed over the circumstances surrounding a potential adoption situation. I needed to reduce my armies and let God fight for our baby. So, we presented and were matched!
We traveled to Florida to meet our expectant mother and get a peek at the baby through an ultrasound. It was a surreal and amazing experience. We were so excited! We came home and got everything ready. We chose a name.
Then, we got a call saying that our expectant mother had had a blood test which showed a very high possibility that the baby had Down syndrome. We could back out of the match with no penalty. We had not checked the box for Down syndrome.
But, we weren’t sitting in our living room with a grocery list of issues now. She wasn’t a hypothetical. I had her ultrasound picture in my Bible. She had a name. No. We were committed. She was already loved and so very wanted. I had been preparing for almost a year to breastfeed her. I sent this e-mail to our close family:
I'm not sure how all you are processing the possibility of a special needs grandchild/niece/nephew. But, I'm so grateful for your support through this process. And, I know she's got an army of people waiting to love on her. It's not long now.
Whatever her needs are, I just. want. her. Will having a special needs child be hard? Without a doubt. But, I'll know her and have her and they'll just be her needs, not a catalog of potential needs that I read on the internet. We'll study her and love her and figure out what she needs and use all our resources to help her. And, we'll get her - in our arms, at my breast. At the end of the day, we've got to trust God. We've asked him to bless us with another child Luke 11:11 “Which of you fathers, if your son asks for[f] a fish, will give him a snake instead? 12 Or if he asks for an egg, will give him a scorpion? 13 If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!” If she has Downs, we are not legally bound to adopt her. We could bail and get our money back. But we won't. I feel like God has impressed on me that doing that would be rejecting a huge blessing that He has for us. Do I feel a bit overwhelmed at times? yes. Inadequate? yes. Afraid? yes. But, it turns out that God's strength is made perfect in weakness. So, I get to anticipate His mighty work in our family, in me, in my other kids. We trust him for His good gifts. We can't wait. 12 more days....
When Sylvia was born, she was perfect – just beautiful. She didn’t seem to have the classic physical markers for Down syndrome – no single crease in her hands, no extra skin at the nape of her neck, no wide space between her big toe and the others… But, wait. Her tiny pinky bent in a bit at the end. Her eyes… were they almond shaped? Was she a little “floppy”? I asked the doctor. They did some genetic testing. Two weeks later, we learned that Sylvia has mosaic Down syndrome.
Mosaic Down syndrome is a type of Down syndrome where some cells in the body have an extra 21st chromosome and some do not. Every type of body tissue may have a different percentage of affected cells, so there is really no way to predict what kind of impact the extra chromosomes will have on the growth and development of the child. All of the risks common to the Down syndrome diagnosis apply, but individuals with mDs often have a milder clinical presentation.
So… here we are a year later. Sylvia is such a joy. She’s a healthy, happy, vigorous little girl. She meets milestones on her own timeline. She rockets around on her belly in a very speedy army crawl. She climbs up to snuggle anyone who sits on the floor. She just started giving slobbery kisses. She’s got her own team of therapists, both professional and in the form of two big brothers and a big sister. We don’t know what the future holds for her, but we’re all in it together. And, I’m so thankful that we get to face the unknowns with her in our arms.
Give me a list of all her disabilities and challenges. I want to check “yes” for every last one.
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For more information about domestic infant adoption, please reach out to me.
