I am not afraid- our baby after Cooper

Getting baby #3 has been a journey like nothing I ever expected.

Almost immediately after Cooper was born and we found out about his diagnosis, I kept thinking of having another baby. I figured it was a reaction to the news, my brain's way of denying the unexpected path placed before us and trying to find one more comfortable. I waded through weeks of grief, unable to connect with my newborn son, and the thought persisted.

"I need another baby."

But the more logical part of my brain said, "There's no way I can go through pregnancy and birth again after the way this shook me." I couldn't bear the thought of having surprises with another child. I did not want to create life again when I now understood the very real possibility of disability being a part of the equation. I didn't understand the blessing that disability can bring. I was terrified. So I continued to push the thoughts of a third child away.

In my discovering the world of Down syndrome, I started to come across stories of families who did have another baby after their child with Down syndrome came. They talked about the way the younger, typical sibling helped their child with Down syndrome progress. They become "development buddies"- one child seeing the other's skills and wanting to do the same. At some point, the younger, typical child catches up to their older sibling with DS both physically in growth as well as cognitively, making the two seem like twins.

This possibility excited me, and thoughts of that third child came back. Cooper's older sister is amazing, but she is a lot older and therefore doesn't give Cooper the peer interaction that someone closer to his age would. I wanted a "development buddy" for Cooper, but knew there was no guarantee that we'd get a typical child, and I couldn't wrap my mind around the possibility of having another child with special needs. I was not convinced it was right for our family.

But... the thought nagged at me and my heart longed for an answer as to whether or not we should try for another baby. It ate at me. I chatted online with several mothers who did have other babies after their child with DS about my thoughts. "What made you decide to try for another baby? Were you scared of the possibilty of having another child with Down syndrome?" I think I just wanted someone to tell me what I should do, even though, of course, that's not possible.

I'll never forget Amy Julia Becker responding to me ( because I love her books and consider her a celebrity! If you have a child with DS definitely check out her book, "A Good and Perfect Gift.") I hope she won't mind that I share her words here, and I hope they can bring some kind of comfort or peace to any other families that may be weighing the decision of growing their family.

She said:

"Yes, you’re right that it was a struggle to think that all through and that we ultimately decided to have two more kids. I think we finally both got to a point where we felt ready to receive whatever children we were given. But some parents don’t get to that point, and not because they aren’t equally loving or equally willing to receive the child they already have. I wish I had an easy answer for you, but I don’t. Life is scary and uncertain and also wondrous and beautiful. We are fragile and resilient and broken and blessed."

Her words were balm to my soul. But, I still wasn't convinced. Until one day, our horse farrier changed my mind completely. He told us of his wife's sister who has Down syndrome. He said, "She's in her fifties now. She's not able to walk much anymore so she's in a wheelchair. And she can't talk very well anymore, either. But, she is such a joy..." He continued to praise his sister-in-law, which was great, but I was in my own mind thinking, "If Cooper's life quality declines when he's about 50, then I'm about 80 and probably not able to help out that much if I'm even still around. Same goes for my husband. That means our big kid would feel the responsibility of his life on her own."

I didn't want that for Cooper or for Andi. Of course, I have no idea if either of my children, or myself, will live that long. I hope God grants us good, full lives. But these thoughts are ultimately what drove me to let in the possibility of a third child yet again.

After some heartfelt and tearful conversations with my husband, we both decided that we should at least try, and we would face whatever came of that together.

The next leg of our journey began, as now I wanted to try for the baby, but felt immense guilt over the fact that I imagined a typical baby, not another child with disabilities. I was told my odds of having another child with DS go up significantly now that I have one with it already. I was also told that Cooper's extra chromosome is completely random and not to worry about it in the future. It was so confusing. But, if our baby did have Down syndrome, that would seem to defeat the purpose of having another child that I hoped would be a support to Cooper and his sister when me and my husband are no longer here to provide for Cooper. In hoping for a typical child, am I diminishing the life of my Cooper, who I have fallen so deeply in love with and would never take back? Do I actually love my son if I hope to NOT have a child like him again? So, I chatted online with moms in the DS community again. Each one understood where my heart was, and I found comfort in their words.

"I know exactly what you mean about wanting a typical child AND not diminishing the worth of your child with DS! Our child is an absolute blessing to our family AND it would be a challenge to have a second child with a disability."

"I think it’s normal not to want your child to have a disability. Yes we love our kids that do, but to hope your next one does not, is ok."

With my guilt somewhat tamed, I now wondered if there is a way to up my chances of having a typical baby. I discovered research claiming that having the MTHFR gene mutation is linked to having a child with Down syndrome. So, I got tested to see if I have the mutation. It turns out, I do have it. (Cooper tested negative for the MTHFR mutation, for those interested.) I started taking methylated folate instead of synthetic folic acid as the research website suggested. For a minute, IVF was on the table, as we knew this could help avoid any genetic mutations the baby could have. But at the end of the day, we didn't feel quite right about using science to try to ensure our baby was typical. That felt a bit too much like playing God for us. (and borders on the edge of selective breeding, which is a whole other topic.) We knew and talked extensively about the fact that if we got pregnant again, there were many, many possibilities and paths the child's life could take. There are no guarantees when it comes to baby making. It was a hard pill to swallow, but I felt we were led down this path for a reason, and though we hoped for a typical child, we knew because of Cooper that it really didn't matter. We would love our baby no matter what.

For 10 months we tried conceiving. Cooper was almost a year old when we started trying. I got to the point where I stopped taking pregnancy tests and started to feel maybe it wasn't going to happen. One night I laid down for bed and realized my period was later than normal. But I didn't wonder if I was pregnant. My husband wanted to me to test right away, but I said, "Nah, I'll do it in the morning." The next day on April 29 I got the positive test, just two years and two week after Cooper's positive test.

We did early genetic screening with this baby, something we've never done before. The results came back "low risk" for every chromosomal abnormality it checks for and told us it's a boy. For the record, the results didn't matter to us- we only wanted to be prepared and avoid any potential birth surprises this time. I waited anxiously for the anatomy scan to somewhat confirm the results of the genetic screening. Everything measured "normal" at 22 weeks, and no abnormalities were found. This came as a relief to me. At least if this child does surprise us with an extra chromosome, hopefully their body will be strong like Cooper's is.

This brings me to today- about four months until baby is due. We wait and pray for this baby to develop and hope he can thrive to delivery and beyond. We are so excited, nervous, hopeful, anxious- all the emotions- to meet this child. I wanted to wait and write this knowing the baby was typical. Even with the screening and ultrasounds there is not a guarantee. But it doesn't matter, really. He's our baby, and if Cooper has taught me anything, it's that EVERY life deserves to be celebrated. EVERY life is a gift.

I know there are challenges ahead. I know I still have so much to learn. Maybe I'm living in a a little bit of dreamland, hoping for so much from this baby and from the future. But at least I can say I gave it my best. At least I can say I didn't live in fear of what could be, and chose instead to keep on living. I am not afraid of what could come because I know it will all work out in the end.

And I have Cooper to thank for that.