When Maddie was born and problems started arising (there's no worry like the worry you feel for your child) I was thrown into a WHOLE new world.... doctor's, physical therapy, feeding therapy, occupational therapy, hospitals, counting calories, lab tests, ultrasounds, MRIs, EEG's (you get the point) For a first time mom it was all very overwhelming....
A friend posted this on her blog and when I read it... I had to read it again, This is what it's like!!!
Welcome to Holland
By: Emily Perl Kingsley
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. 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 your friends are 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.
Holland isn't so bad, In fact, It's beautiful... stressful, but beautiful! We still don't know what Maddie's test results mean. My pediatrician is working on our insurance to approve a referral to meet with a geneticist at UC Davis. The geneticist there has been reviewing Maddie's medical file and thinks it's possible to get Maddie's medical funded for 'research'. The bloodwork for George and I would also be funded to see if the duplication was inherited. Maddie's micro array was $4500, so that would be a HUGE HUGE HUGE help if they would fund it!
I emailed rarechromo.org and they were able to find another child with a similar duplication. They have 7400 members registered with them, 46 of them have duplications on the 5th chromosome, one of them is in the same segment as Maddie's. They have no one matching Maddie's more distal duplication. I have an email out to the little girls mom and can't wait to talk to her! Wow... our life feels like a soap opera at the moment!