Thursday, January 19, 2012

Waiting for you to shine

I know I'm a Rachel Coleman freak and I adore her . . .but really she is awesome. One of her songs, "Shine", she wrote about her daughter Lucy who has spina bifida and cerebral palsy. It's about realizing the pain and hurt about your child's diagnosis and knowing that they will do everything in "their own time" and that eventually they will "shine".

So here I am, waiting for Seth's time to shine. While Seth always shines to me, I realize that he doesn't to others, or only to certain people whom appreciate his specialness.

Having a child with special needs is a roller coaster ride. One minute you are up on the highest hill because your child just mastered that milestone, learned how to walk, said their first word, called you "mama" for the first time . . .and then you rolling down that hill, faster and faster until you reach the lowest bottom and and that tread up the hill starts again.

There is never a period of going straight, forward, it's always a cycle of ups and downs. And while the ups are wonderful, they are fantastic, the downs are really hard. You feel like you are always waiting for your child to "shine".

With Seth and milestones it's like magic. . . we never know when it's going to happen. We could work on skills for months and months on end with no develpment and then . . . boom on day he gets it and that skill is mastered. Do you know what happens then? We move onto the next milestone, we go back to the bottom and move on up that hill, slowly and steadily, until it is time to come crashing down again.

It's amazing where Seth is now compared to how he came into this world. And it's amazing to see where we are as parents with him. But I have to admit, four years down this road and I didn't expect the downs still to be so painful. I didn't know that I would always feel like there was more to get done, more to do, more to work on. There was a point where once I felt Seth was walking then it would all be uphill from there. For a time it was, for a time it was wonderful, but then I realized, well Seth is walking but his balance sucks and he has no stamina to walk for long periods of time. So my list of stuff to work on got longer.

When Seth said his first word, I thought "great he's going to talk". Three years later and speech is a constant battle. Yes he signs wonderfully, yes he can express his wants and needs to us, but only his parents can understand his speech. At four his speech is unintelligible to others.

Life with a child with Down Syndrome is not easy, it's not all rainbows and unicorns and skittles. It's not about writing a blog about how wonderful the small things are and having millions of Etsy sponsors pay you shitloads of money to brag about their products. It's hard. I'm not going to sugarcoat things here on this blog. If you want to read about unicorns shitting out butterflies then go to her blog. Now excuse me, we have hills to move up on. Slowly and steadily. . . but we'll shine again at the top.

1 comment:

  1. HA! I freaking LOVE your blog!!!! I know I am still riding that high of Russell learning to walk...And I know once that wears off I will start obsessing about the next thing...My journey for the past two years has been consistent with feeling high highs, and low lows. I accept that now. That's just the way it will always be.

    As always, I love reading what you have to say!

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