Bright and early Saturday morning I headed up to a Utah Parent Partner meeting at the Utah Family Voices offices. It seems as though there are a few at Parker’s Pediatrician’s office who think I might be good at this kind of stuff….pointing parents in the direction of needed resources. Personally I think everyone else said no, and I was the bottom of their bucket. Either way, I’m learning a lot and am enjoying the opportunity.
They shared with us the following essay, a response to Emily Perl Kingsley’s Welcome to Holland. Now before Ms. Rzucidlo refers to Autism. I’m replacing that with Diagnosis, and because of it’s length I’m abridging it. Stuff in parenthesis is mine. Apologies in advance to Ms. Rzucidlo.
Welcome to Beirut
“I’m often asked to describe the experience of raising a child with a diagnosis. To try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this….”
There you are happy in your life, one or two little ones at your feet. (In my case there were six at my feet….a couple actually taller than me.) Life is complete and good. One of the children is a little bit different than the other, but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad.
One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified. Kicking and screaming you struggle to get away, but there are too many of them. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you (or your child) live through this? This is the day you get the notice, “YOUR CHILD HAS A DIAGNOSIS.”
There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. (And your supposed ‘ally’, your insurance company has crossed over into enemy lines.) “Life long diagnosis”… Bullets whiz by. “Neurologically impaired” ….”A good smack is all HE needs to straighten up”…
God has overestimated your abilities. And there is nobody to send your resignation in to. You’ve done everything right in your life. Well, you tried. Well, you weren’t caught too often. Hey! (You’ve never even heard of an imperforated anus before….) You look around. Everything looks the same. But it’s different. Your family is the same. Your child is the same, but now he has a label and you have a caseworker assigned to your family. She’ll call you soon.
You’ll find some of the greatest folks in the world that are going through the same things you are, maybe on a different level, but a special needs maze all the same. Taping into these folks is a great lifeline to help you get through the day. You develop an odd sense of humor.
Every so often, you get hit by a bullet or a bomb. Not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your arm aches from holding on to the phone while you are on hold with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You are exhausted because your child never sleeps. (Or your night nurse calls off for the zillionth time)
But hope springs eternal. And thank God for those who fought so hard before you.
Your child will make progress. When he speaks for the first time, maybe not until he is 8 years old, your heart will soar. You will know that you have witnessed a miracle and you will rejoice. The smallest improvement will seem like a huge leap to you.
You will know sorrow like few others, and yet you will know joy above joy.
You will meet dirty faced angels on the playground who will be nice to your child without being told to be.
There will be a few nurses and doctors who treat your child with the respect and care that any child deserves.
There will be people sent into your life who will show you concern and love like few others. (Thank you. From the bottom of my heart, thank you.)
Knowing eyes will meet yours in restaurants (or hospital hallways) , and they’ll understand.
For those people you will be forever grateful.
Good times are still had, and because you will know how bad the bad times are, the good times are even better.
Life is good, but your life is never normal again. But, hey, what fun is normal?