Thursday, March 5, 2009

stuff and stuff

I am happy to report that the tomato issue seems to be settled 50/50. I would have been happier to win, but at least I know I'm not COMPLETELY crazy for enjoying the occasional tomato on my caesar salad, thankyouverymuch.

Now, on to something I've been mulling over for a few days now. I read this the other day, and it inspired me to talk about the people in my family with Fragile X. There's me, Punkin, my cousin (20s), and my great uncle (80s). (My mom, my two aunts, and my grandpa are all carriers. My grandpa and great uncle are brothers; one has the full mutation and one has the premutation.)

There seems to be a general love for all things musical -- dancing/singing/twirling musical, I mean, not necessarily typical pitchy children's music. We're talking Julie Andrews, here. The only time Punkin likes loud for loudness' sake is when he's making it himself.

My great uncle hates swings. I'm not sure how my cousin feels about them, but Punkin loves them and so do I!

My great uncle and my cousin have seizures. Since Punkin had one as an infant (staring spell), I'm always nervous that more are just around the corner.

We all have acid reflux. I will always find the money to refill my prescription for Aciphex. It's liquid gold in my world.

We all love hamburgers, though some more than others. =)

Punkin, from what I can gather, is much more active (ie: ADHDish) than my uncle or cousin.

They are all, in the world of FXS, quite verbal.

My great uncle cracks me up. It's difficult to explain through writing. Imagine you have some cotton balls in your mouth. Now say the same phrase 12 times. Try, say, "Father of the Bride. That's a good movie. That Steve Martin, he's so funny. I got that one. Father of the Bride. I got that whole thing! Have you seen that one? Father of the Bride. That's a good movie. That Steve Martin, he's so funny. I got that one. I got that whole thing." Now say it while waving your hands from side to side and shaking your head for TWENTY MINUTES.* That's my Uncle. He lives in a nursing home, where he is the mayor. He has a large movie collection and at least used to play music for the other residents. And he is paranoid about the other residents stealing his M&Ms, so he hides them. If you want to see a smile on his face, hand him a card with money inside or ask him to take your picture with his Polaroid camera!

I used to think I had nothing in common with my cousin; now as an adult I find we have a great deal in common. In fact, we have at least one gene that matches! I think it still baffles me that the same mutation on our chromosomes can cause such differing results.

My cousin lives at home, and I imagine Punkin will for as long as he can stand me. Some day I know he will have to be part of some kind of care facility, but I just can't bear to think of that day right now. It weighs heavy on my heart. I do hope there are more opportunities for people to meet adults with FX; in my experience, they are a whole new version of joy.

Also, in completely different news: I went on a date Saturday. I honestly can't tell you the last time I went on a date -- probably over five years ago. It was way fun. But that's all I'm gonna say about that. =)

*Can you tell this happened to me? I was home alone with my uncle and, sadly, no Father of the Bride. I almost went out and bought it.


Jennie said...

Maybe he won't need a care facility. And even if he does, maybe there will be other FX people with whom he can forge a bond! It'll all be okay, baby.

Anonymous said...

Robert used to love to swing. All on his own! He also used to love to go on the rides at the Disney Parks. Alas, no longer :(

Sarah said...

Thanks for this post. It is great to hear about your family members who have FXS. As always, your writing style and approach to life are a pleasure to read!

Punkin's Oma said...

I beg to differ with you on the tomato issue. You combined things to make your point equal to mine.

A typical Caesar salad comprises romaine lettuce and croutons dressed with parmesan cheese, lemon juice, olive oil, egg, Worcestershire sauce, and black pepper originally prepared tableside. Caesar Cardini (Italian-born Mexican) is credited with creating the salad.

No mention of tomatoes.

Go to mention of tomatoes.

BTW: I had great fun with David while you had great fun on your date:)

Anonymous said...

Funny you mentioned hamburgers. I was just today thinking I need to have a Whiskey River BBQ burger from Red Robin. And of course to go with it a Baileys Milk Shake. SOOO delicious.
Love you lots, Aunt Patty

Laura said...

Don't worry too hard about the future--good things happen that we can't anticipate. God has a plan for you and Punkin. I loved this whole post!