Surprise, Your Baby Boy Has Down Syndrome!
From the second that pregnancy test displayed, “pregnant,” our lives were forever changed.
My wife, Gina, and I were married only five months when she got pregnant in April for the first time, but we mourned the loss of our first baby only a few weeks after when she had a miscarriage. Two months later our family grew by two teenage girls. Our two nieces needed a safe place to live and we opened our home to them. A few days later, “pregnant” appeared on our digital pregnancy test.
My wife had such an easy pregnancy. Every ultrasound provided assurance we were not going to lose this baby. When asked about genetic testing we refused, since we would not consider an abortion regardless of findings. But doctors assured us everything looked great. My wife even had a quick and easy labor. After getting to the hospital, it wasn’t more than three hours or so before our son, Jamison, made his appearance into the world.
When Jamison was born there was a short cry, and that was it. I could tell something was not right. As I walked over to see my new son, I took one look and said to the nurses, “I think he has Down syndrome or something.” Everyone assured me he was healthy and he looked great — but I knew, and nobody would confirm or deny my suspicions.
My wife and I both believed and told each other the entire pregnancy we felt like God was preparing us for this. Yet here we were, not prepared at all. Just like that, the joy of just giving birth to our son was gone. In its place was fear and denial. As everyone came to visit, smiling faces quickly turned to teary eyes. The life I had planned for my son seemed to be fading away to a life of uncertainty. The pediatrician came in and explained that the testing would not come back for a few days and confirmed Jamison did have some of the markings of Down Syndrome, but that it was not a clear indication of whether or not he actually had it.
Jamison was healthy with no complications, and we should have been happy, but instead we faced denial. “No I think he just has your eyes. He has no heart condition so it must not be. God wouldn’t have allowed this right after a miscarriage…” and so on and so on. I remember praying at night in the hospital, God please, please, please don’t let it be Down syndrome. After we left the hospital we went to our pediatrician and he kept telling us our son was fine, “I myself would be very surprised if it was Down syndrome,” he even offered taping his ears to make them look more flat.
When we got home from the doctor, his reassurance made me feel we were just being paranoid — Jamison was totally “normal.” And then the phone rang. Tests confirmed Jamison had trisomy 21. Tears just fell from my eyes, I couldn’t hide my sadness. Every dream I had for my son felt like it had to be mourned. I thought, I can’t handle this, how are people going to react to him? How am I going to react to him? How am I to raise a baby with a disability? How could God allow this? I fought and wrestled with God for a few days. I had strength one minute and lose it another.
Then I turned to social media and found so many inspiring stories of hope, courage and love. I found support blogs and pages and I believe God spoke to me through these saying, “This is not about you.” And it wasn’t. This was all about Jamison. As days turned into weeks into months, I began to embrace this life.
I recognized our baby was not defined by his medical diagnosis — we just had a baby who happened to have Down syndrome. Jamison opened our heart to a love that can’t be described in words. Yes, there were more doctors and therapist involved. Yes, he was hospitalized three times in one year. Yes, he is behind on milestones. But the victories we all shared through him outshined all the other challenges.
Jamison quickly began blessing everyone he met. There was something about him that could melt the hardest of hearts. He is not special because of his diagnosis, he is special because he is Jamison. His future is still full of uncertainties, but whose child isn’t? I believe God didn’t make a mistake when he created Jamison. I believe God’s glory shines through this little boy’s heart every day.
I have learned that the grieving process I went through was normal. If you find out your child has Down syndrome, it is OK to grieve and be sad. It is OK to wrestle with it.Don’t be afraid to be honest with your fears and doubts. There are going to be hard times. But I can guarantee that joy will come in the morning.
Our family embraces the life God gave us. Jamison teaches us how to be the parents he deserves.