5.23.2011

"D-Day" (diagnosis day)

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. i couldnt imagine you could feel this way. that mourning feeling. that feeling of absolute LOSS. i know it will go away but for now, that is all i can feel...NUMB & 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.

13 comments:

  1. I know that words right now mean nothing, so instead im just going to cry with you and pray for you and recker. And thank you for the story,i've never seen it put more beautifully.

    ReplyDelete
  2. Kayla, Jeremy and Recker we love you guys and your in our prayers!
    -The Cooper's

    ReplyDelete
  3. Kayla, Jeremy & Recker,

    I am sobbing with you. I feel your heartache...we love you so much! Our prayers are with you.
    `~Aunt Kris~

    ReplyDelete
  4. i cant imagine the pain you are feeling, but you're an amazing woman. it runs in your family. if there is anything i can do to help please let me know!

    ReplyDelete
  5. kayla, you are a super woman. i love you and your sweet, adorable baby. you will forever be in my prayers.

    xoxoxoxoxoxoxxoxoxoxo

    ReplyDelete
  6. Just know we love you and you are always in our prayers...Rob, Tara and Marleigh

    ReplyDelete
  7. Kayla, I just sat here and cried while reading this. It has been years since I have seen you, but I will be praying for you and your sweet family.

    ReplyDelete
  8. kayla you will get through this! recker will be a blessing to you and your family in so many ways! we are praying for you guys. and i live just around the corner, we should go to the park sometime! hang in there girl!

    ReplyDelete
  9. kayla, you and jeremy are amazing parents, recker is an wonderful kid. we love you guys so much and you are in our prayers. if there is anything you need please let us know.

    ReplyDelete
  10. Your little Recker is one sweet boy. I have never met him, and yet I sense his wonderful spirit and am in awe of it. He is so close to our Heavenly Father, and I know he is one special little angel. You are an amazing mom, and I admire you. And your family. My heart aches with you, my tears drop with yours and my prayers echo yours. We love you and your little Recker and will have your family in our thoughts, prayers and hearts.

    ReplyDelete
  11. I love the Roussels, we will be sure to remember you all in our prayers.

    ReplyDelete
  12. kayla darling, i love you dearly. i want so badly to see you. SO BADLY. just to give you a hug. you are absolutely amazing, i miss you.

    ReplyDelete
  13. (((hugs))). It's hard to hear, but it gets easier. You start to cry a little less(but there are times that you still cry). Now that you have a diagnosis, you have a better understanding of where to go from here. He's still the same boy that you've loved before his diagnosis. Don't think about the stuff that you don't think he will do. He might surprise you!

    ReplyDelete