Monday, June 23, 2014
I've Been to Italy, I've Been to Holland
**Trigger warning. Please read with discretion.**
There is a poem written by Emily Perl Kingsley, titled "Welcome to Holland." It has made its way around many special needs circles. I have read it several times. The intent is admirable. It has been seen as an inspiration for many parents. I am not one of them. Let me preface this post by saying if you continue to read, there may be triggers. This post is for the parents and families of children with severe or traumatic injuries and disabilities.
Holland is not traumatic. In my mind, Comparing Holland to Italy is like comparing your expectations for a neurotypical child to having a different neurotypical child. Like, I was expecting to have a girl, but it turns out, I'm having a boy. Time to repaint the nursery and buy different onesies. Maybe it would be more precise to compare having a special needs child to making it to Italy, except the country has been devastated by a natural disaster, or there are riots in the streets or some kind of epidemic.
There is another essay called, "It's Not Holland." I think it is much more accurate. Instead of reaching a vacation destination, you end up in a desert. This happens without warning or explanation. I can relate to that. But the more I read these two pieces, the more I feel compelled to write about it from my own perspective.
There is a wide range of different types of special needs. In our case, David's injury was traumatic. For him and the whole family. If I was rerouted from Italy to Holland, I don't think I'd get that upset, beyond the frustration of changing flights and preparations. It would still be a vacation. I'd be excited about visiting the Rijksmuseum and eating all the glorious pancakes. It's not like they're telling me you have to go home, or your plane is gonna crash.
When doctors tell you "something's happened" to your three day old infant, you go numb. You can't hear the rest of what they are saying. As you watch the trauma unfold, and your baby hooked up to every piece of medical equipment imaginable, it is hell, not Holland. It is like being hit by a freight train and then going into hyper vigilance as you watch the monitors and learn what all the numbers and beeps mean. And each fluctuation in those numbers and beeps spikes your already exhausted adrenal system. And that is one of the reasons I feel offended every time I read that essay.
It is hell, seeing the baby you cared for while he was in your belly, with specialists saying he and his twin brother "look like a million bucks" have his life almost ripped away from him because of negligence. It is hell seeing him blue, in an incubator with tubes coming out out of his nose and mouth, taped to him. He is naked, except for a diaper, separated from his twin brother. He is in a coma. And you don't know what is going to happen next. "Just wait and see," you are told. It is hell, listening to the doctor give you med school 101 and not listening to your concerns in a makeshift basement NICU run on generators because there is a literal hurricane happening outside (Hurricane Ike). It. Is not. Holland. At this point, I can maybe relate to the desert, but it's more like hell.
It is hell coming home to the place you have prepared for your new child, and having to rearrange it for the NICU equipment that just got dropped off with a five minute explanation. It is a place you didn't expect, but it sure as hell ain't Holland.
If It was Holland, I'd come home with a healthy baby, and he'd develop and walk and coo and eventually talk and play with his brother. But it's not Holland. It's trip after trip to the medical center. It's disappointing news from neurologists and a plethora of other specialists. It's a "cover your ass" biopsy to make sure the medical mistake wasn't "genetic." It's a feeding tube. It's a tracheostomy. It's therapy after therapy. It's RSV, which is definitely not Holland. RSV is not even a desert. For us it was a full on destruction zone, with screaming and spewing blood and struggling for hours and hours through the night, on the verge of death. Yeah, that's right, DEATH. I'm not exaggerating. Doesn't sound like Holland to me.
But you know what? David survived all this. He is still here. He may not be reaching prescribed milestones, but he is here. He is intelligent and immensely strong. And he is loved tremendously.
I have been to Italy. And I have been to Holland too. Literally. They are amazing and beautiful places. The place that traumatic brain injury takes you to is not beautiful and it is not amazing. It is not fun. It tests you and makes you stronger and it makes you cry and lose sleep. It is isolating, like the desert. You know what is beautiful and amazing? That my kid is a survivor. That he almost died twice and he's still here and he is making progress. He is learning. He is doing new things. Maybe not walking and talking and eating, but every new thing that he does is a MAJOR accomplishment.
It has gotten better since those first few years. But it still isn't Holland. It is a place of destruction that is being rebuilt the best it can by our little family. It is exhausting, and maddening at times. But we are doing it. As we do, we meet others who are rebuilding their own places.
I have been to Italy. I have been to Holland. I have also been through hell.
Note: It should be specified that "Welcome to Holland" was written by a mother of a child with Down Syndrome. It is not my intent to detract from the inspiration parents may find in reading it. There is no poem that I know of for traumatic brain injury or NICU horrors, and "Holland" gets shared too often in the wrong context.
Posted by Shana at 6:52 PM