When we first got a Down syndrome diagnosis minutes after Simeon's birth, my world changed. Not in the way one might expect, but change it did. I became passionate in the weeks following about several things. First, I became passionate about learning all I could about T21...about what we should expect, early intervention, supplements, possible medical issues, etc. I lived, ate, breathed, and slept Down syndrome. I researched, asked questions, joined a Ds online support board, and read countless blogs of moms who've done this before me.
Interestingly enough, after about 8 months or so, my passionate research of Down syndrome waned. It is no longer "all Ds, all the time" in my brain. And, no, I did not exhaust the literature, just the need to know. I do feel like I have become an expert, but I think my insatiable thirst for knowledge on the subject was more about feeling as if I had some control. Knowledge is power.
Except when it's not.
Control is an illusion. More knowledge about what might happen does nothing to prevent it from happening. More knowledge about Ds will not increase my son's potential. In the beginning, I needed for Eon to be a Down syndrome superstar. He was going to break all the records and meet every milestone on time....
Now, I just need for him to be fully Simeon.
I will continue to learn more about Ds, follow the research, and ensure he receives every opportunity; but, I no longer need to do all that to prove something to anyone, including myself.