After three weeks of severe sensory deprivation at the ICU, our family unit desperately needed to take a long leisurely stroll in the park right above our soft sandy beach, where the grass is always emerald green and the air always smells like salt. We walked down the knoll, towards the infinite blueness of the ocean-sky and immersed ourselves in the splendor of the beach's transcendent beauty, sucking out all the marrow out of every moment. As we were approaching the bottom of the knoll, our path was blocked by a foot-powered toy vehicle and its wee little operator. Actually, the wee little operator wasn't operating anything, he was too busy screaming like a banshee, the fallout of a toy vehicle fender-bender. "What's wrong?"- asked the Dad of the little lad while running to his son's rescue, and then chuckled at this dramatic display of disproportionate distress. "Hey, kid!" - Izzy called out in a smoker's voice, still raspy from the intubation. "Wanna see my scars and bruises from the hospital?" - she pointed to the healing incision on her neck and the adjacent bruising on her chest. But only we heard her, the little boy didn't speak any Izzy.
10 comments:
:)
I hear her, too.
It's sad that we and our kids have to have that kind of big perspective!
I loved seeing Izzy's hair. How is she adjusting to being home?? xo
I'm so glad you are home and that Izzy is on the mend!
I used to think screaming tots are brats and products of bad parenting. Special needs come in all shapes and sizes. I'm sure (actually I know) that people on the street think of my daughter as bratty for screaming for no apparent reason. But I know better that it's because of her SPD, intolerance of changes in routine and whatever syndrome it is that she has, shall we ever find it.
She isn't bratty and I'm not an awful parent. I usually take rude comments in stride, with a roll of my eyes. Goodness knows I was that judgmental person just a few years ago.
But I've cried on several occasions when people I thought would understand, neighbors and librarians screamed at me and at my daughter because she couldn't make sense of her world and dissolved in a heap of tears and shrieks.
Things aren't always as they seem.
GAMZu - No where did I say that the little boy was bratty or that he was screaming for no reason, and I especially didn't say that his screaming was the result of bad parenting. What I said was that the little boy had a little fender-bender with his toy vehicle and it made him cry vehemently. I also mentioned that the father of the little boy was chuckling at his son's reaction lightheartedly, which indicated that he was witnessing something uncharacteristic of him, and not a usual meltdown. The screaming incident only lasted a short while and was quieted by the Dad's comforting present, it was obviously not some neurological temper tantrum.
It was a very normal, natural, healthy episode of life: little boy gets hurt/scared, it makes him scream like it's the end of the world, Dad comforts him, and all is well with the world. On the contrary, little girls seizing nonstop, getting intubated, being sliced up, struggling for their lives while their parents are not able to do anything about it, is not a natural part of life.That sucks. The fact that constantly seizing, sliced up, struggling little girls still march on against all odds, that is amazing. And that was the point of my post. I know, it wasn't very explicit, but still, I think it is a bit unfair to insinuate that I'm judgmental.
I guess your writing style can be vague sometimes (though artistic.)
I agree, Izzy has a very different life than that little boy, and very different things to cry about.
My fur prickles when people seem to be criticizing a tantrumming or otherwise misbehaving kid. I once sternly reprimanded a boy for pushing ahead of my kids on the slide several times. Then I saw that a class from a SN school was at the park at that time and I felt really bad.
My daughter doesn't seem to have any differences at first glance, so people often expect her to act like a typical 3 year old.
I get what you were trying to say now.
GAMZu- I do appreciate you leaving a comment and thus giving me a chance to clarify my admittedly vague writing :) Chances are, there are others out there who interpreted my post the same way as you did, and by no means do I want to come across as a disability-martyr who feels entitled to pass judgment on others or minimize other people's problems. Invisible disabilities are so hard, because on top of the actual disability, you also have to deal with the hostility, judgment or unsolicited advice and meddling of others who think themselves experts on your child. I would never want to make you or any other parent of a child with special needs feel bad or further isolated, not even inadvertently.
"Invisible disabilities are so hard, because on top of the actual disability, you also have to deal with the hostility, judgment or unsolicited advice and meddling of others who think themselves experts on your child."
That point is so true, Erika. I often face the same problems as my son obviously looks totally "normal" (apart from his glasses which makes other children stare at him as if he had three heads...) and I very often feel the need to explain his different behaviour to other parents who are around us just because I know they do not understand why he does not act like he should be in their eyes.
This is really hard for me and I wish I could just blind out the thought of what other people think about us. Guess I am still learning...
Very, very happy for you all....praying for the smooth ride without fender-benders or roller coasters!
What an interesting discussion this turned out to be!
I think parents of kids with invisible disabilities have a trying journey because oftentimes people don't 'believe' that the child has a disability.
What came through to me was the depth of love we all have for our kids and how pained we are when we feel that others don't understand and see them as we do.
xo
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