Almost daily, I think, I am baffled by the responses I often get by strangers when it’s mentioned that Jaxson has Down Syndrome. It might be bad of me, but at times, I almost have to choke back laughter at some of the responses.
And anger, too.
Just the other day, two nurses ogled over Jaxson at my grandmother’s house while they set up some equipment to keep her congestive heart failure at bay. When I mentioned that we had to start packing up or we’d be late for therapy, they were shocked, “Therapy?! For what?” I then explained that he had physical, occupational, and feeding therapy sessions, to which one nurse responded, “All because he was a premie?”
I felt something weird inside at that moment. They didn’t notice? Was it wrong of me to feel a touch…I’m struggling with a word here. Something along the lines of relief or happiness or maybe a little shock. Anyway, it was all wrong to feel.. but it still happened.
I couldn’t contain my smirk at this moment. I knew what was probably going to come, “No, because he has Down Syndrome.”
Nothing of significance followed immediately. Except my senile grandmother, (whom I’ve kept it a secret from only because I liked that she was the only one in the family that didn’t look at him and see the characteristics. She loves his features and tells him every time she sees him. It makes me swell with the most happiness, and usually, tears) whipped her head around and shouted, “Now who said he has that? Tell that doctor to pull his head out of his ass, he ain’t got that.” Oh, how I love that woman.
A few minutes later, the younger nurse, still in the nursing program actually, approached me and told me again how adorable Jaxson is. We chit chatted about all of the cute things he does, I bragged, ect. But then she said this (essentially, but I’ll quote it nonetheless):
“When my daughter was eight years old, I loved it. It was my favorite age and still is. One night I told my husband this and he said that it was too bad she didn’t have Down Syndrome, because then she could be eight forever.”
This is a medical professional in training. Jesus.
Anyway, then she went on to speak about the innocence that people with Down Syndrome have. How they’re immune to the bitterness of the world, on and on… I, along with any other parent walking this path, have heard these statements a million times, I’m sure.
(Side note, after reading about the young man with Down Syndrome who was just asphyxiated by police officers, and not to mention a few other heart wrenching news stories that all deserve much more press than they’ve gotten, I can assure anyone, no one is immune to the bitterness in this world)
But I guess, my reason for writing this blog is my own confusion. How do I handle these situations? I’m still stumbling around this new path. Do I take pity on people like this? Nicely explain how wrong and ignorant they are? Do I jump down their throats and clearly take offense? Don’t they deserve that? To know how hurtful their words are? Should I even care… does it matter?
I think it does. Like all great things that change within this world and bring about a new and positive perspective, and better treatment, it started with someone somewhere trying to change a viewpoint.
But how do you change it? Or educate, I suppose, is a better word since change takes education.
My first reaction in the above situation was offense, but I didn’t make it known. Just felt it. And for some reason, I laughed with her after she said it. Why did I do that? I’ll chalk it up to shock. I re-play it in my head and try to think of ways I should have handled it. Sometimes it involves me grabbing her by the throat and shaking… but I figure that won’t educate her much. Do I blatantly say, “that’s a very rude thing to say?”
I think it’s best to just let people know, “hey, my son won’t be eight years old forever. He’ll be a valuable member of this society, capable of all emotions.”
I should have just said that. *Slaps forehead in disbelief. I think my issue is that I’m constantly overcome by shock, and lose my footing. I need to get past that.
Situations like the one above happen much too often. And I’m still tender and vulnerable; I want to be rude back to people, yet sometimes I want to burst into tears. How dare you, my son is perfect. Neither of which will solve anything.
I just need to find my footing on this path. I need to find solid ground and a strong tree to hold onto. Jaxson needs more than a hesitant “vulnerable” mother, he needs an advocate.
Grandma, I think I’m the one that needs to pull my head out of my ass. (And a vast majority of society as well)
Any suggestions for handling these situations? Any responses you made that had an impact? Any times you lost control and jumped down someone’s throat? Am I wrong? Tell me your stories. Educate me.
And just for good measure:
the way's he sleeps.