I recently watched the video blog of a special needs mom, whose name I regret I can’t recall, who I identified with immensely. It was concerning the point that you reach when you know it isn’t all going to be okay. By “okay” I mean reaching milestones that most parents must surely imagine their child experiencing. We mourn for those moments.
We mourn for the jitters wondering if she made the cheerleading squad which she will never have the opprotunity to try out for.
We mourn for the teenage obsession of her hair, outfit, and make up to look just right for the first day of high school she will never attend.
We mourn for the mom and daughter shopping dates for dresses for the prom pictures she’ll never take.
We mourn for the first drive out to spend a night giggling about boys at a Starbucks with her friends.
We mourn for the evenings debating which colleges and careers might fit her best.
I think it’s fair to say many like myself want to believe it’ll all work out with just a little more time, the right therapy or a great drug of some kind. It’s difficult to face the fact that while it WILL work out, it won’t look how we thought it might. We mourn for that. We feel guilty because we mourn for that.
We feel guilty, because we blame ourselves…even if there is no reason to. At my worst moments the “if only I’d done” lists are long, and I feel responsible for robbing her of what’s “normal” because of something I had faild to do…even if I am logically aware that I never really did anything at all.
We feel guilty because to mourn the loss of those moments might make us seem as if we don’t value our child exactly as she is. We do. It’s the loss of the ease of the typical kind of life, and the knowledge of the reluctance of the world to be accepting of what’s different that saddens us. It’s the thought my child needs all those resources in order to live to appear as typical as possible that I mourn the most.
If the world were a perfect place those like my daughter would be held in the highest esteem because they are different…and so often better. They have hearts of gold and lack the bitterness so typical of the typical. They are empathetic and see the beautiful in the everyday and are a gift to those of us blessed enough to have them in our lives. So while all those lost moments do make me sad, I am incredibly blessed that I get to know her and have been given the honor to call myself her mom.