Cooper did not sleep well at first. I met other moms and their child with Down syndrome, and many would remark on how their baby's extra chromosome seemed to come with extra sleep magic because they slept incredibly well. I'd laugh and say mine came with an extra chromosome but not the extra magical sleep.
At his 3 month, 6 month, and 9 month checkup I'd ask the doctor what I could do to get him to sleep. "He'll get there," doc said.
But at 9 months, we discovered Cooper had gained barely a pound between 6 and 9 months. It was now my life's mission to get him gaining weight. I fed him so much that sometimes he'd barf from being too full.
As he started to eat more, he started to sleep better a little at a time. And after almost 10 months of not sleeping through the night, he finally did a few nights a week. And now, it's rare if he doesn't.
I realized he had been starving. That's what kept him up at night.
And then, I realized I had put a limit on him without even knowing it.
Because of my "take it all in" personality, I read and researched and learned so much about possible problems when a baby has Down syndrome. Cooper never had to have a feeding tube, but I immersed myself in other issues he could face. Aspiration of liquid, sitting and swallowing issues related to muscle tone, constipation struggles, allergies to certain foods, sensitivity to dairy and gluten, teeth coming in later or in a strange pattern, the list ran on and on and on. So I held him back in the eating department, convinced after all I read and "knew" that I was helping him.
"Don't put limits on him."
"Don't let anyone tell you what he can or can't do."
"Advocate for him everywhere you go."
These are phrases I've heard over and over in Cooper's first year of life. And I always thought, Duh, of course I won't limit my own child and I'll give the smack down to anyone who does.
But I had limited him. His own mother kept him from growing. I accidentally created barriers in my mind that didn't serve him and he really didn't struggle with to begin with. That's not to say it's not good to be aware of the possibilities. Because we will continue to monitor many things for him as he grows that can be unique to Down syndrome. But I learned to let him take the lead in every area of development.
Cooper doesn't know he has Down syndrome, not right now. He's a baby. And his first year of life has been actually really similar to raising my other baby. So he doesn't know or understand that there are certain things that can be unique about his life. I won't try to hide from these differences. We'll talk about them just like we talk about everything at home. But mostly I want him to feel loved, especially at home. Especially with the people who know him best.
I know there will be other challenges in the limiting department as Cooper grows. Because we still have a long way to go developmentally. It's almost funny to think about how this first limitation was from me, his mother. But I'm glad to have learned early on that even subconscious bias can affect the way not only I interact with him, but how others will too.
If you know me, you know I grew up participating in athletics. I remember my dad telling me "the only limits you have are the limits you put on yourself." I was good at putting limits on myself. I always worked hard and pushed myself, but never expected myself to really accomplish anything major. There was so much pressure in the expectations as an athlete, and I crumpled under that pressure constantly.
Cooper has actual limits that I will never fully understand. He has low muscle tone. He has a lifelong cognitive disability. His crawling is delayed, and I can say with a lot of certainty that his walking and talking will also be delayed. It seems so silly now to think of the limits I put on myself as a kid. I had no problems with my muscles or my brain function, and yet I still struggled to see just how good I had it.
Lesson from Cooper: Having limitations doesn't mean you have to be limited. The sky is the limit... no, there is no limit. Having no limits does not come with automatic achievement or recognition or whatever you define as surpassing limits. But it means we can all grow as much as we decide we want to, whether we have Down syndrome or not.
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