Thursday, October 22, 2009

Mirror, mirror

I think one of the biggest blows when a mother finds out that her baby has Down syndrome is a blow to her sense of self-worth. This less-than-perfect child was created by my body. There is something wrong with me. I'm responsible for this. When we get those ultrasounds that show a hale and hearty baby - a normal baby - and then when we give birth to those future achievers, there is such a feeling of pride. I did this! I made a perfect baby.

I think for most mothers - especially mothers who give up careers to stay home and raise a family - our feelings of value and self-worth are incredibly wrapped up in our children. Their successes and achievements are our successes and achievements. Their setbacks, delays, and poor behavior are our failures. They are a direct reflection of us, or so it feels. It's not like that for most fathers - even the really involved, hands-on fathers like my husband. Men tend to find their feelings of self-worth elsewhere (like their careers). How many dads do you know who lament about feeling like a failure because their 3-year old isn't yet potty trained? But we moms, we torture ourselves over these things. I know I do.

Which is why there is so much competition between mothers over their children's achievements. "Junior is walking at ten months!" (Read: "I must be a really great mother for my kid to be so advanced!") It's a race - whose child can walk the earliest, whose kid has the largest vocabulary at the youngest age, whose kid is potty trained the quickest, whose kid gets the most As on their report card.

And, really, what does it all mean? Do any of those achievements guarantee a full and happy life? Do they mean anything at all? Is the early walker destined to be successful in all aspects of life?

All these things, I think, are even more keenly felt when you're a mom dealing with a child with a diagnosis like Down syndrome. After you get over the shock and grief, you batten down the hatches and decide that your kid is going to be the best kid with Ds that there ever was. The most advanced. The least delayed. We're going to get this kid sitting independently by eight months! Crawling by ten months! Self-feeding with the appropriate pincer grasp by 14 months! Signing 25 signs and walking by 18 months!

And why? Yes, we want them to be the best they can be. We want them to be able to function as best as possible in this world that, in all honesty, caters to and is accepting of normal and above. But there's also the unspoken fact that they reflect on us. The quicker they meet their milestones, the better we feel about ourselves and the job we're doing as their mothers. The slower they are in advancing, the more guilt weighs us down, the more we feel that we are falling short. And, I think, the more we feel that the world looks at us, their mothers, in that light. We feel judged. If we can somehow assure our children's achievements, maybe the world won't hold it against us so much that we're foisting these imperfect children on society and asking for acceptance.

It's very difficult - and utterly humbling if you can manage to do it - to separate oneself from one's child and realize - really accept - that your child is his or her own person, with his or her own temperament and range of motivation and abilities . . . and that their achievements are their own, as are their shortfalls. And the best we can do is love them, no matter what, and provide them with opportunities, the biggest cheerleading squad, and a soft, safe place to fall.

6 comments:

Monica Crumley said...

This is very deep and profound and very meaningful to me. I used to love it when people would say, "He doesn't even look like he has Down syndrome." SOmehow I thought that would make this syndrome less. Now that he's older, I recognize, as do others, the fact that his face shows that he has Down syndrome. I'm more comfortable in my skin as his mom and I cheer for every victory he makes and every milestone, however miniscule it may seem, and I celebrate for all the world to hear. It's all in how we view our children that others will learn to view them. Thanks for posting...

DownTownDan said...

You are an incredibly wise person.

BLOOM - Parenting Kids With Disabilities said...

So true! I can remember thinking early on that we were lucky that our son had a "rare" genetic disorder people wouldn't immediately identify. And when our son didn't make the gains we had hoped, I often felt I had never been so unsuccessful at something in my life. And then over time I was able to see myself in my son and my son in me, and there was no distancing him from me. The more I accepted him, the more I could accept me. It wasn't about "changing" him or fixing him anymore. I began to see the concepts of perfect and normal in a different way. I began to value difference.

The Boltz Family said...

Thank you for writing that. It really spoke to me this morning, and was what I needed to hear. I spend entirely too much time feeling like I am somehow failing Jack.

Brandie said...

Having a child with DS has made me more accepting of all my children's imperfections and weaknesses. It took away a lot of the pressure to have the perfect or advanced kid and just be happy with what is. Great post!

Kristin said...

Wow - that's so funny (not in a funny sort of way ya know). But I have wondered why I never felt any sadness when we adopted Max. I've heard so many people grieve 'the baby that never was', so to speak. So why didn't I feel that? We intended to adopt a "normal, healthy, newborn". But we decided to adopt Max, the perfect match for us as it turns out, born with Ds and an AV canal defect. Maybe this is why I had no sadness. He didn't grow in my belly. Hmmm. Thanks for this perspective.