All aboard for some honesty, okay?
I was having a really hard day earlier this week. I mean like asphyxiatingly Jonah hard.
I glanced up to see Amelia and Elise nose to nose, fighting over whether the show was over. Elise said yes, since the music wrap up had started, Amelia said no, as she wanted to watch them dance into the credits...
And it hit me like a blow to the gut. They are exactly the same size. Exactly.
They should not be the same size. Elise should be talking about teen things and looking like a woman. She shouldn't be the same size as her 8 year old sister who is 4 years younger. She shouldn't be more difficult to understand than her 5 year old sister. She should have friends to call and text, not a puppy to play Doc McStuffins with....
(Which was super cute, by the way...)
Here's the thing. You don't just accept Down Syndrome and all the disabilities that may or may not come when your child is born, and go on, never a thought to what might have been...the side paths sneak up and you have to re-deal with the now, every once and a while. And it doesn't mean that it isn't worth it...or that you would do it differently...just that it's never done.
I have said repeatedly that I am glad that I am a bigger woman and that I enjoy being strong. Ethan was tussling with Elise yesterday, and accidentally picked her up more than usual, and realized how big she's gotten...and realized what kind of task I face every time I go into a store...as I literally lift her up and into the big part of the buggy 80% of the time...beyond the keening at lights or abruptly running off. I am glad she is small of stature (4'6"), because if she was as tall as a few of her more docile friends, I'd be hard pressed to deal with her sensory meltdowns...and because of her profound struggles in public settings, I am thankful she has a visible disability. As I've seen with her sister, who also has sensory issues, people aren't as forgiving with the invisible disabilities...
I do get flashes of what might have been. She is my most athletically inclined child. She really LOVES sports...but she struggles to play. She is a leader and commander...but people struggle to understand her. She adores babies and animals, and they love her. She would have been the consummate babysitter/pet sitter. I hope she will find a niche that will give her responsibility and independence in an area that she thrives in...but for now we are still looking and supporting and training.
Sigh.
I know this a little bit of a dark post. But it's not all gumdrops over here. And that's okay.
We walk on. And enjoy the puppy tea parties.
It's interesting...in my blog feed today there was a long string of posts by random people about the struggles of disability that they were facing this week. I posted one, too. Guess it's not a gumdrops kinda day, eh? ((hugs)) to you - I hear ya. :-)
ReplyDeleteDid you really snap a picture at the moment when they were arguing, or did you ask them to reenact it? ;)
ReplyDeleteIt is probably often a little harder when the child with the most special needs is not the youngest child in the family. If the child is the youngest, then it would feel more natural that she still struggles with things that her siblings can do easily, because she is the "little one" no matter how old she gets. If the child with the most special needs is older than her siblings, though, then you have to watch the younger ones catch up to her, and even pass by her, developmentally. I can imagine that would make it harder.