Here’s Max looking woeful as we were driving off a ferry yesterday. It was the first time we ever took the car on a boat, and we weren’t sure how he’d respond. Sometimes, he wigs out in new situations. But, no: Max looooooved it. So much so he wanted to stay on the boat. I…
Category Archives: Conditions and Diseases
The Difference A Week Can Make
What a difference a week can make! Last week I was looking toward Monday with apprehension, even dread. We were all but certain that our little man was to be diagnosed with a rare bone disorder that would probably require surgery. Pessimists? Realists? I’m not sure. After 3 years of bad news, it’s sometimes hard…
Tiptoeing Around
You know how you know “something” is not quite right, call it your “mommy gut” kicking in. But all around you doctors and therapists purse their lips together and shake their heads. They have been shaking their heads about this one for about 2 years.
Finally this week his OT is admitting, well he “might” have a “slight” problem. To me thats like being “a little pregnant”…either you are or you are not. There is no room for middle ground.
“Oh, he’s so precious!”
That’s exactly how someone recently described Max. Who is 7 years old. I know she meant well, but it seemed really derogatory to me. It’s something you’d say about a baby, not a boy. Max may seem younger than his years—because he can’t quite talk, because he is actually small and because he still has…
Another Day, Another Diagnosis
Well, the day is almost here… I wish I was more excited, but it’s not THAT kind of day that we’ve been waiting for. For about a month now, we’ve been waiting for the July the 19th and Monday it will finally be here. This is the day we go to meet a new specialist….
Battles not worth fighting?
“I’m ready,” said Matthew. He stood before me in a long sleeve plaid shirt, khaki pants and dress shoes. It was 103%. To top off the look, Matthew had cut his bangs too short and tried to hide the botch job with a semi-comb over. He had patches of toilet paper soaked in blood all…
How has having a kid with special needs changed your personality?
When we were in the NICU with Max, following the stroke he had at birth, there was a Debbie Downer doctor we had to deal with. One day, I got into a bit of a personal conversation with her. “I feel like this is going to change my whole personality,” I said. “It will,” she…
Didn’t your mama tell you that staring is rude? (Part 2)
I’ve written before about how unsettling it is to me when adults stare at Max. Well, here’s what’s even more unsettling: When kids stare blatantly at Max—I mean, just plain gawk—and their parents don’t say a word. We were on vacation all last week, and it kept happening. While we were at dinner, and kids…
Summer…Grrrrr
Don’t you just want to scream when you hear parents say how much they LOVE summer? “It is so wonderful to have NO schedule for a change!” they say. Those of us with children with special needs know that life without a schedule is hellish. I’ve worked hard over the years to set up a…
Where do you go on summer vacation?
Before I had kids, I loved planning trips almost as much as liked going on them. Researching places, hotels and things to do were all part of the thrill. Now that we have kids, summer vacations are a whole other kind of fun, and there’s a lot less planning. That’s because Max is most comfortable…