Let me tell you what it’s like to the parent of a multi-special needs almost-teenage boy and two sassy ‘tween girls.
It is freaking hard. I’m not trying to one-up anyone. I don’t want you to feel sorry for me. Writing is cathartic and my only way to reach out to people who get it. Not all of you will. That’s fine. But maybe there’s someone else out there going through the same kind of shit who needs to know they’re not alone.
My son was born with numerous visual impairments. His first pediatric ophthalmologist told us that he would be completely blind. Well, I’m a mom and I didn’t like that much so we shopped around for another doctor with a better outlook. We found one and lo and behold, my son is not totally blind! He has “holes” in his retina that cause blind spots (coloboma), as well as eye misalignment (strabismus), and his eyes constantly flutter from side to side (nystagmus). His visual acuity is also poor. So he struggles, but he sees.
On top of this, he was diagnosed pretty early on with a processing disorder. This means he doesn’t learn like you and I do. It also means he struggles even more. He also requires subcutaneous HGH every evening in order to grow. So though he’s 12, he’s the size of a normal 8ish year old.
We have been lucky. He’s been in the same school system since kindergarten and the kids he’s been in classes with over the years couldn’t have been better. There have been no instances of bullying of any sort, in any grade. The kids are wonderfully supportive of him. They “steal” his dome magnifiers because they think they’re “cool.” They beg him to turn on his video monitor so they can use it too (and cheer when he does).
The person that is the most hard on him? Himself. This year, he finally began to notice that he is pretty different than his peers. So add that on top of his vision and his learning disability and you have a recipe for one unhappy tweenager.
My son was once a really happy kid. He was genuinely good, in every sense of the word. He would say things like “Happy good day, Mom!” (what he thought I always said to him when I said “have a good day”). He’d play a game where he’d try to top how much you loved him by adding his favorite things at the end of “I love you”. For instance, “I love you… ice cream!” followed by “I love you… cars!” etc. I tried that the other day as he left for the bus stop. I think I said “I love you… elevators!” (he’s really into elevators at the moment).
His response was, “Yeah yeah, love you too, bye.” It’s dark when he leaves the house and I’m glad because I totally cried. Losing your kid to teenager-hood is freaking difficult! You actually mourn, you really do. You see that sullen, sulky teenager walk away from you and your mind immediately goes back to the “happy good day!” days. And you cry.
So life for this kid ain’t the easiest. He has a lot to deal with on a daily basis. He also has two younger sisters who are completely unaffected by the same genes that wreaked havoc on his body. Their vision is 20/20. Their grades are straight As.
“Oh, that’s wonderful,” you think.
Yes. And no. While I am insanely proud of all three of my children, my other emotions are all over the place. I love that my daughters find that good grades come easy to them. I love that my 10-year-old daughter earned 2nd chair flute and beat out 6th graders to do so. I love that she reads on an 11th grade level. I love that my youngest inhales books and excels in art.
But I do not like that all of their accomplishments serve to make my son feel inferior. He is the only one in our family – immediate or extended – with any of these issues. Which means that he feels like an outsider in his own house. Do you know what that feels like, as a mom? Pretty damn shitty. It makes me feel shitty because I don’t know how to fix that. (I don’t think I can, honestly.) It also makes me feel shitty because I feel guilty for celebrating my daughters’ accomplishments. And that’s not fair to them.
Some of my friends tell me that I’m an amazing mom because I love my kids so fiercely. I don’t think that makes me an amazing mom, I think that makes me a normal mom despite extraordinary circumstances.
I hope that my unwavering love and support of my children will serve them well as they grow into adults but the jury will be out on that for another 10+ years. I hope that my children will grow up and realize that I did the best that I could. Some days were awesome. Some days were awful. But every day, I loved them.
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