Monday, January 30, 2012

"D-Day" (diagnosis day)

May 23, 2011

i barely slept last night. i lay in bed wide awake. sick. worrying. praying. praying that i'd be able to get through today. praying that everything would be ok. i just had this feeling, ive had it once before, in louisiana. i just knew. i got recker all dressed and we headed to phoenix. when we got there,  we got into see Dr. Robbin Blitz (she used to be at St.Joe's, now she's at phoenix childrens) at around 9:30am, she came in with her intern. She asked me to sit next to her by the computer while her intern observed/played with recker. they layed out gymnastic type mats for him to play on, gave him toys and books. I sat there as Dr. Blitz went over his extensive bloodwork that he had done last week. she said there were some very concerning irregularities. i thought, well ok so? she explained that she was concerned that he has something called mitochondrial disease/disorder. she said we need to see the neurologist and that possible he may need a muscle biopsy. then she sat there, went over all of her observations, the 5 tests that recker took, 2 evaluation packets done by me, my mom, and the doctors. she was telling me everything that i didnt want to hear. i sat there. i was listening. i just didnt understand. this wasnt how his appointment was supposed to go. i just kept telling myself, hold it together i think you may be misunderstanding her. but then she said it. AUTISM. she showed me where he rated on the spectrum. that was hard to see. he is moderate on the scale from mild to severe, he's right in the middle. i was just told my baby was autistic. i held it together. i kept telling myself to stay strong. i think i was still in shock. they both looked at me with a puzzled look, like maybe i wasnt getting it. because i didnt react at all. i just sat there staring at the wall. she got up to get me a tissue, which i thought was weird at first. THEN IT HIT ME.  he will never serve a mission. he will never get married. he will never have a family of his own. his life will never be what we thought it would. i finally cried & she sat there with me and went over this whole huge packet she made for me that had information about ASD. by the time i left her office it was after 12:30. i cried all the way to the car. i sat in the car for about 30 minutes sobbing. trying to comprehend how our lives have just changed completely. everything that we had dreamed for him, is gone. i cant explain how it feels to be told something like this about your child. i feel broken. i know that so many people function and live normal lives with children who have Autism, i know about all the resources and who to go to and where to get help. and i know everyone will be so kind and offer advice or suggestions, and i appreciate it, but not now. PLEASE NOT NOW. i could NEVER imagine that its possible to feel this way. that mourning feeling. that feeling of absolute LOSS. "they" say it will go away, but for now, that is all i can feel...NUMB & ROBBED. ROBBED. 

"Welcome to Holland" 
by emily perl kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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