So this past weekend we were all in Venice for Yuma’s 10th Birthday Party (Yuma is my brother-in-law’s dog). The big party has become an annual getaway for us. As we turned onto Washington Blvd. last Thursday it dawned on me that one year ago I made that same turn by myself, with only a four-month-old Hope in the car with me. My blog was young, but I made several posts from the party that weekend.
What a long time ago that seems. I had to convince myself that it was only one year since I had been there — it seems so much longer ago. I was still doing the breastpump/fortifying-breastmilk/taking 30-minutes to get 4 oz. down routine. Hope had not yet started the HGH and was just barely starting to smile and laugh. I discovered that trip that she when I sang “That’s Amore” she’d giggle — and I worried that she liked a song about pizza. Now I’m feeding her pudding pie for dinner and using fruits sparingly.
It’s hard to believe how much older and more tired I feel in just that year. And all things considered, we had it easy. By the time we made the trip last year, Hope was off the feeding tube, and though I took the portable oxygen tank with me I don’t think we ever used it after that. We avoided a lot of the difficulties that many families with children with PWS have to go through — but I still can’t imagine it being harder.
This year’s party was more fun for us all, Hope is pulling up to a standing position and Grace is potty-trained. But there are still little things that worry me, like the fact that when we went to the aquarium and the zoo Hope was not the least bit interested in the animals and fish but was enraptured with the crumpled piece of paper she played with at the aquarium and the stroller strap at the zoo.
Maybe I’m just in a glass-half-full mood right now, I had a splitting headache last night that I’m worried was a migraine and even today I still feel a little headache and residual nausea. Tammy went to work today for a meeting, she’s not due back for another week but the summer is drawing to a rapid close — my mom is back at work on Monday. I’ve had a nice little vacation the last six weeks or so with my wife around to entertain the girls and handle the doctors and early intervention appointments. I am absolutely dreading the two trips a week to EPU by myself — I am just plain burned out and frustrated by the whole procedure. On top of that, in October I’m sure I’ll do the right thing and have Hope evaluated for speech therapy and god help us if I have to do three times a week.
I suppose the one “good” thing about summer ending is the school year brings routine and I like routine. I haven’t been to Yoga since May and I really need to get back into that but there’s just no motivation for me to leave the house at night when I haven’t been trapped there all day. But I really felt better when I was working out, and certainly my pants fit better.
I think the end of summer has left me in a bit of a lurch.
Now aren’t you glad I broke my blog silence for this ray of sunshine?
P.S. Prader-Willi is being featured on GMA and 20/20 this week — I’m not watching, but FYI.