Saturday, March 21, 2015

Downs Syndrome: "I didn't know I would be able to love her the way I do"

CBS News  I got the call two years ago that no expecting parent wants.

The genetic counselor told me the baby girl I was carrying would have Down syndrome. I felt like I had been sucker-punched. I sobbed, mourning the loss of the child I thought I was supposed to have.[...]

I recognized from the moment I began considering ending my pregnancy that the decision was based more on sparing myself and my husband the pain of raising a child with Down syndrome rather than sparing our child.
I knew I could quietly end the pregnancy, tell friends and family I had miscarried and start again. We could put the whole thing behind us and pretend it never happened. I could get a do-over.
Fortunately for my daughter, my husband wasn't on board with that plan. When I whined it wasn't fair we had been dealt a crappy hand, he said, "Fair? What's fair? What does that even mean?" Still, he was scared about our future, too. [...]

Still, I needed more information. One of the best pieces of advice I found online was from a parent blog encouraging me to seek out a local Down syndrome support group where I could connect with actual families. A quick Google search led me to Gigi's Playhouse in New York City.[...]

My thinking changed after that one visit. To say Gigi's Playhouse helped save my daughter's life may sound dramatic, but it's true. We were welcomed into the community. And I could see first hand that many of my fears were unfounded. These kids played and acted just like other children. They laughed, danced, wrestled with each other, whined and cried just like kids I knew who had the standard 46 chromosomes.[...]

One thing I want to make clear. There's nothing particularly special about my husband or me. We wanted a baby and that's exactly what we got. She may not be the baby we expected, but then again that's what being a parent is all about. As much as we like to believe we can control who our children will become or that we can protect them from disease or a cruel world unwilling to accept them, the basic truth is, we can't. For some parents it takes years or decades to accept this. My husband and I just had to come to terms with it before our daughter was even born.

Still, I understand this is scary stuff, facing the unknown of a life with a child who has an intellectual impairment and could possibly have a host of physical ailments. But 18 months into this mom gig, I can tell you it's not nearly as daunting as I imagined.

I'm exhausted and stressed out a lot. But it's not because my daughter has Down syndrome. In fact, my husband and I enjoy our baby girl so much, we decided to have another baby when she was only four months old. So if you bump into me on the street and I look over-tired and disheveled, it's because I have a very active 18-month-old daughter, a five-month-old son who still doesn't sleep through the night, and I work full time.

It's true my daughter has some developmental delays. And she receives a bevy of therapies through Early Intervention to help keep her on track. But she's also wonderful. She has a twinkle in her eye and an infectious grin that makes even the most miserable looking people on the subway smile when she stares them down. When she puts her head on my shoulder as I rock her to sleep each night, my heart melts no matter what kind of day I've had. I do think she is more special than other children, but it's not because she has Down syndrome. It's because I'm a completely biased and doting mother who thinks no one could possibly be as adorable, bright or funny as my own child.

And her name is Margot.

No comments :

Post a Comment

please use either your real name or a pseudonym.