There are a handful of sentiments and cliches that are used over and over in the Down syndrome community that it almost feels as if one is expected to agree with and regurgitate the same information. Once you join the community of parents who have a child with Down syndrome it's easy to find yourself repeating these sayings as if on automatic pilot.
I've blogged before that I just don't identify with most of these cliches such as "since having a child with Down syndrome I've learned to be more patient."( Nope.) "I've become a better person since having my child with Down syndrome." (Again, nope. I don't believe I was such a horrible person before I had my daughter that I was given a child with Down syndrome to become a better person.)
Another sentiment I see oft repeated in articles is "Down syndrome is such a blessing."
This one makes me pause and think. Do I agree with it? Or am I again on the other end of the spectrum with my feelings?
Yes we've been blessed to meet a multitude of families we otherwise wouldn't have met if Kayla didn't have Down syndrome. On the flip side of that I can say we probably would have been blessed to meet a whole group of different parents and families if Kayla didn't have Down syndrome.
But is Down syndrome really a blessing?
I'm not talking about if Kayla is a blessing; she is, but not because she has Down syndrome. I've said it before: she's a blessing simply because she is my child and she exists - as much as Lucas is a blessing to us. For me it has nothing to do with Down syndrome.
Down syndrome is a medical diagnosis and if I separate my child from the diagnosis and just talk about Down syndrome, by itself, would I call it a blessing?
No. It's no more a blessing than Kayla's diagnosis of ADHD, or her diagnosis of Celiac Disease. It's no more a blessing than Lucas' diagnosis of allergies, or his diagnosis of asthma. They are all medical conditions and I wouldn't count any of them as blessings. Why? Why would they be classified as blessings?
That's not to say I'm in denial or haven't accepted my child as she is: I have. She was born, she was diagnosed, it's a part of our lives.
Is Down syndrome a blessing when it brings with it issues like Kayla will probably never be able to drive because she just won't have the quick reaction time, or ability to stay focused, that driving requires?
Is it a blessing that she could be more easily taken advantage of in more ways than one?
Is it a blessing that she can't fully read social cues?
Is it a blessing that concepts such as money and time-management, which come so easily to her brother and other typical same-age peers, do not come as easily to her?
Is it a blessing that telling her she has 15 min to get dressed and be out the door is the same thing as telling her she has 2 hours?
Is it a blessing that she will likely need some kind of assistance to live as independently as possible? And living independently probably will not look like it did when I lived independently.
Is it a blessing that the provisions we have to make for her future are completely different than what we are able to do for Lucas?
Is it a blessing that a law had to be made to allow her to have another avenue of savings because if she has over a certain amount of assets her eligibility for assistance will be reduced?
Is it a blessing that she can't simply own property and a checking account and savings account and do with her money what she would like because it all has to be analyzed and scrutinized to make sure she doesn't maintain more than that magical limit?
Is it a blessing that she can't keep up with her same-age peers academically?
Because I don't view it as a blessing does this mean I wish she she didn't have Down syndrome?
Most days I don't think about Kayla having Celiac disease, but some days I wish she didn't have to deal with a specialized diet.
Most days I don't think about Kayla having ADHD, but some days I wish she didn't have it so she could concentrate better on academics.
Most days I don't think about Lucas having allergies, but some days I wish he didn't have to take Zyrtec and Flonase every night.
Most days I don't think about Lucas having asthma, but some days I wish he didn't have to make an inhaler part of his morning routine.
Most days I don't think about Kayla having Down syndrome, but some days, yeah, some days I wish she didn't have the deficits that come along with a cognitive disability. And there is nothing wrong with admitting that most days I don't give it a thought, but that some days I don't like the medical diagnosis of Down syndrome very much.
It's a diagnosis and I think of it like their other diagnoses. Yes it's quite a bit more involved than allergies, but it's a diagnosis nonetheless and I don't consider it a blessing any more than the other diagnoses.
Down syndrome isn't a blessing, but Kayla, she is a blessing with or without Down syndrome.