Thursday, February 26, 2009

Down Syndrome: The Not-Always Easy Track

It happens so often. Someone sees that your child has Down syndrome (or any other disability), and you can see (or you imagine you see) them wondering how you manage. They may look at you with pity.
So how does the special-needs parent react? We smile and say how we love our child (and we DO), and how well he is doing, how talented he is in some ways (and He IS). But even on those off days when we feel that we fell into a bottomless pit, we still put on the "it's nothing" act, and somewhere inside we wish people could accept our child AS IS, without being almost perfect, without him having to measure up to everyone else. And we wish that we could sometimes admit that this is not always an easy track to run on. But we worry that if we admit such a thing, it only strengthens those who say that their lives are not worth living, and so we shut up and smile and something inside cracks a little bit.
That is why parent groups are so great. Because there we can let the “Gosh, DS hurts” sometimes show. But occasionally , or even not so occasionally, even at parent groups, the parents of older children drown new parents in this positive tone that has not even the slightest tint of “it can some times be hard”. I guess they are trying to help the new parents see the tremendous possibilities that their tiny babies have. But what happens is that new parents are afraid to admit that they really didn’t WANT a kid with Down syndrome to start with, and that sometimes they are frustrated “out-of-their-minds”. So let’s sometimes be honest. Down syndrome can be a real pain at times. Now that does not mean that my child is not the light of my life. She is. And she has every right in the world to exist, blossom, and achieve.
And new parents, hear: Shoot for the stars. But know that if you feel like G-d kicked you in the shin, its Ok to be at that place occasionally. Just don’t stay there.

9 comments:

tesyaa said...

Very nice post that I can relate to!

Ruby's Mom said...

Great post!

muse said...

Wow!
I just can't say anything else.

krista said...

I don't think it's always with pity, sometimes you may find interest.

rickismom said...

Of course, but often there is pity. You can often hear it in the voice or see it on the face.

Maya said...

Very good post. So, so true.
I'm not exactly the parent of an "older child" (mine is 4) but when I meet parents of babies with DS I have to remind myself that sometimes they just want to vent to me because they know I've been there.

Belinda said...

Honesty is such a good thing and just listening without judging or correcting or trying to "make it better," is very healing and freeing in itself. But oh, it is hard to do.

Amy said...

Excellent post -- I LOVE your honesty and transparency! As the mother of an older child w/Ds (she's 14) I know it isn't always easy...

Thanks for stopping by my blog! I've put you in my reader. I don't want to miss a word :-)

Chris said...

Thank you for being so honest. That is why I love your blog; I know I can trust you to tell it like it is.