After I calmed down a bit from the initial shock of the prenatal diagnosis of DS, I began to think about what it would be like to have a child with DS who was one of those superstars. You know, the ones that are higher functioning, at the top of the DS bell curve? The ones you see doing some amazing things or who become self-advocates. This was for sure going to happen to me because, let's face it, I am an overachiever and my children would be too. Nothing else could possibly happen. Right? Yeah isn't that always the way it goes when something unexpected happens to you?
I am beginning to realize that this was the initial way I coped with the diagnosis - the fantasy of a superstar. I don't blame myself for this, I think it is only natural. We have to work on our grief and change in reality in stages and I was indeed grieving the loss of the child that I thought I would have. The superstar was just the next step to help me get along. An important step actually.
I can't predict the future. Who knows if Quinny will indeed become a superstar in her own way, but let's just say she hasn't been performing on the top of that DS bell curve as of yet. For the longest period of time I didn't want to really see that, but I knew it in my heart. I would see the other beautiful superstars out there around the age of Quinny and I would look at wonder at what they were doing and then go back into denial as to where Quinny was at in comparison. Look, turn your head, and then get distracted by something else was the name of the game.
Oh the comparison game, why does it keep happening when we should know better?
But EXCITINGLY I am beginning to see that I will be ok with the idea that Quinny may not be a superstar by society's standards. I am beginning to see that it doesn't matter. I can't control that and I am thankful for what I have. She has started to do a lot more lately, which is great! And in this journey, even with (and I'd hate to admit but probably because of) the crap crap crappy IS I have learned that I love her no matter what. I wouldn't trade her with anyone, not even the cream of the crop of superstars because she is my love, my daughter, my mini me.
I salute the superstars that I see. And I salute those who wouldn't be considered superstars by society, but are superstars in the hearts and minds of their mommys and daddys. All of our children are beautiful and such gifts - all are superstars to someone. And Quinny is my love, my superstar, my everything. I love you baby girl. You always show me the way.
-Karyn
What day is it, even?
3 years ago
It's funny, it's almost like the additional diagnosis makes it easier to let go of those "superstar" dreams. I mean, I know that oftentimes I think to myself, well, Kayla would be "higher functioning" if she didn't have autism. But since she does, I have to just accept whatever her abilities are and will be.
ReplyDeleteNice post Karyn. She is a superstar for sure.
ReplyDelete---Jen