As soon as I saw him, I knew. Even though he was just 4 lbs, very discolored and almost bruised from the cord, I knew. And I wondered why it was the first time it came to me. Why didn’t I know before? Why didn’t the doctors know before? How could I have been pregnant for almost 39 weeks with a son with Down Syndrome, and no one told me? And why didn’t I get the chance to raise him and show the world how amazing he would have been?
I was told a few possible reasons why Henry’s heart stopped beating inside me. It was probably a cord accident. There may be some chromosomal abnormalities that were undetected. It wasn’t my fault. I couldn’t have prevented it. These things happen and usually there is no reason or explanation.
I was confused. I was only 28. Why would Henry have Down Syndrome? The chances were so small. Reading medical journals and article after article I knew that his heart may have not been strong enough, but it was at the big 20 week anatomical ultrasound, so what changed? Did it change?
Eight years later, and some of these questions still run through my head, but with different expectations. I don’t expect to have any answers. I only know what I need to believe. What feels right to me. That Henry wouldn’t have been strong enough to thrive. That maybe his life wouldn’t have been as triumphant as I wanted for him, maybe he would suffer. And I can really say “It’s okay”. Because I am.
There was a time after he died that I was angry. I was angry with God because to me, He took Henry because He didn’t think I’d be a good mother to a child with Down Syndrome. And as irrational and strange as it sounds, that thought filled my head for years. I stayed angry, buried deep but the anger was there. But along with anger with God, I was so angry with myself. Because I felt ashamed knowing I was relieved to know he had Down Syndrome. I was effing relieved. How horrible is that? I was relieved because there was an answer. There was a reason perhaps. There was something that could justify or clarify or explain. And even though I’ll never know for sure any of that, I needed to hear that my suspicions were right. That he did have Trisomy 21.
The range of emotions ebbed and flowed for years. Sam came and I had to prove, mostly to myself, that I would be a good mother. That I was capable no matter what. And then came Bo who challenged my skills again. And every day at least once I stop and ask myself if I’m doing and showing them my best. Am I yelling more than smiling? Am I making a small thing a big thing? Am I listening to them and understanding their working, growing minds? And when I ask myself that, I think of Henry. And I know that even though I doubted if I’d have been a good mother to Henry, I could have been. I would have been. Because there is no shortage of love. No shortage of laughter and hugs and fun and happy tears. I can be silly and strong at the same time. Because I am the mother of 3 almost 4 boys. I am still Henry’s mother. I still have love for him and would smother him with my wrapped arms just as much as I do Sam and Bo. And maybe it took 8 years to really believe that. It’s ok. Because I do. Because I am.
After Henry was stillborn, I had trouble finding good resources and research. One of the best things I discovered was the March of Dimes. And we have been walking as Team HPB in the March for Babies every year starting with his first “birth-day”. Our team has raised nearly $40,000 in that time. If you’d like to donate on this World Down Syndrome Day to support our team through the March for Babies, you can click here.