Fragile X-Traordinary: TUBES

Tuesday, February 17, 2009

TUBES

"You know....with Fragile X comes mental retardation. . . . But I wouldn't even know he had anything. He's not a funny looking kid."

This is the first thing the ENT said to me when we saw her today. Put a knife in my heart while you're at it. Sometimes the best scientists just don't make the best doctors. Because of that, she didn't want to delay in putting tubes in Pup's ears. "He's already at such a high risk of developmental problems we shouldn't wait." As much as I was all for her get to it attitude, she could've spared me a ride on the Straight Talk Express. Sometimes a little kindness goes a long way. At least she knew what fragile x was. For that I was grateful. It was just a reminder that those "Check with your doctor if you are concerned about your child's development" passages in all baby books and baby websites apply to me.

Anyway, Pup will be getting tubes in his ears within the next few weeks. Another hurdle conquered????!

4 comments:

Anonymous said...: I would have so wanted to say something like, "Ya know...with a degree comes some level of intelligence. You sure don't look smart." lol...like you said...at least she knew what it was and is going to get him tubes.; February 18, 2009 at 10:22 AM
Vicki Davis said...: I am so sorry for her lack of sensitivity. At least pup will be getting the tubes without a battle!; February 18, 2009 at 10:52 AM
Tammy said...: Well, with my experience I have learned that not all doctors have the best bedside manners or know how to talk to parents in a respectful way. That is why the good ones really seem to stick out in your mind right?? Good luck with everything, even though my experience was different I truly understand the emotions you are going through and I want you to know that I think you are doing a fabulous job :) Tammy Rickabaugh-Zucker; February 18, 2009 at 4:17 PM
Floortime Lite Mama said...: Uggghhh
what is wrong with doctors
I just came upton your blog and am really touched by it
My son has ASD - pretty classic ASD in fact and he still brings us tons of joy and is very intellignet
Dont believe all the doom sayers
I am reading this book right now "The boy who loved windows" and its soooo inspiring. She has a child who seems pretty limited potential at birth and does so well with tons of hard work from her and professionals; February 19, 2009 at 6:03 AM

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Welcome to Holland

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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.