Monday, August 13, 2012


I am writing this post mostly for my AS and Special Needs mommy friends who find themselves where we were just one short year ago. Wondering about bringing another child into the world while having to cope with a special needs child. It is a major decision for any family, but one that is complicated by a child that requires more from his or her parents than a typical child.

When Cole and I got married, we knew we wanted at least two children, probably three, all close in age. That was our plan. Well, my plan. Cole isn't too much of a planner. The only plans he makes are flight plans! But I am (what I like to call) an "adaptable planner." I like to have a plan. A baseline. I am okay to deviate from that plan should the need arise, but I like to have that starting point. Sometimes that trait doesn't serve me well. But most of the time, it does.

Cole was deployed for a year when Ava was just 2 months old, so in my mind, I was thinking we might start trying for #2 shortly after he got home from Kosovo. But during that year, very early on in fact, I started noticing the red flags that would eventually lead us to where we are today. She was too happy. Too social. Didn't make direct eye contact. Was slow to meet early milestones. Was inhumanly strong. Things that concerned me but that I just tried not to worry about, since the doctors kept assuring me that she was perfectly healthy. Well then she really started missing big milestones and things started happening, and we ended up where we are today. With Angelman Syndrome.

Once we had the diagnosis, we were first concerned for and about Ava. But we were also concerned about what that meant for our potential future children. Both of us agreed that, if Ava's genotype was one that had a high risk of recurrence, we would not have any more biological children and instead adopt. Which was a heartbreaking thought for me, but one that I could accept. If Ava's genotype was Del+ (which it is), and had a low risk of recurrence- basically the risk anyone in the general population has- then we would leave it in the Lord's hands. And that is what we did. After some very in depth and costly tests (which, thank you Tricare, insurance covered in full! Praise the Lord!) on both Ava and myself, we were deemed "genetically typical." Cole didn't undergo any tests since AS comes from a deletion or mutation of the maternal side of the 15th chromosome. On a side note, Harvard Medical School, if you are reading this, I am expecting my honorary doctorate in genetics any day now. Tick tock. :)

So after that, we started trying for another Brewer baby. And a short time later, we got pregnant with sweet little Archer. As soon as I got pregnant, I had another child to worry about. To wonder about. To dream about. A whole new set of hopes and dreams. When we found out he was a boy, I had a new room to plan, a name to decide on, things to do and paint and design. My sole focus wasn't on Ava anymore. And you know what...


Having any one child, I think parents- especially mothers- tend to obsess and focus too much on the child. Which is natural. And if that single child has special needs, I think that obsession and focus is magnified. Sometimes to an unhealthy level. There are many marriages that break up, many parents that fall into a deep depression, after a child is diagnosed with something as significant as Angelman Syndrome. And I fully believe it is because your entire focus and energy goes to that child- no one else. Not your spouse, not yourself. It is a very daunting and taxing thing, having a special needs child. But having another child to balance that attention is already proving to be a breath of fresh air to me! And that is what I was told by my AS parent friends.

I know it won't always be fun and happy times with Archer. He may (Lord forbid) have health or medical issues of his own. He may be a wild and rowdy boy that tests my patience to the very end. I don't know. But I do know that being pregnant with him has already helped balance the dynamics in our family. I can already see myself paying more effortless attention to Cole. Something that, before Archer, I had to work at doing because I would get tunnel vision on Ava.

I still worry about Ava, and much of my time is spent- and will always be spent- on her. Therapy sessions, research, doctors visits, tests. It is all still going to happen after the baby. But now I have someone else, another child, to lay in bed and wonder about, pray for, love. It has brought a peace and balance to my life already, and I am excited to see the changes in the rest of our family once he arrives!!!