I know, I know — I’ve been a terrible blogger for the past six weeks. I’m going to try to get back into a regular writing routine.
So what have we been up to? Well, my last post was May 19, just after the big Prader-Willi Symposium. I think I kind of checked out after that, not because of anything bad — just needing a break. I feel like I’ve been living and breathing Prader-Willi Syndrome for the last fifteen months and I was just burned out. I needed a diversion.
Thankfully (or not), the California Supreme Court provided one when they upheld Proposition 8 a few days later. It was not an unexpected result and I was surprisingly unaffected by the decision, helped in large part by another diversion. I had been helping out in the planning of a statewide response to the Court’s decision, called Meet in the Middle 4 Equality, which was scheduled to take place the first Saturday after the court issued its decision. We received notice that the decision would be forthcoming on May 22, so from then until May 30 I was pretty absorbed in preparations for that event.
Of course, right smack in the middle was Grace’s birthday, she turned 3 on the 27th, of course her party was planned for the 30th, so we had to move it to the 31st, and I had to bake all the cupcakes on the 28th. Not surprisingly, after all that I was sick for three weeks. I noticed a little tickle in my throat the night of her party, and the next day it was all over — fever, phlegm, the works. We all had it, Grace and Hope were sick first – flu, then cold, then Tammy and I got a mild version of the flu and I the full blown cold. So, long story short, we spent a whole month passing around two very nasty viruses — and of course nobody had the same virus at the same time.
But the couple of weeks focusing on non-PWS activism was kind of fun for me, I’ve made some wonderful new friends in that process and it was just nice to be active in a different capacity. And so since then I have kind of kept active in that arena and am now helping out in some very minor ways with promoting the National Equality March, scheduled for October of this year in Washington, DC. I haven’t figured out how I’m going to get there exactly, since I hate to fly — and, being right in the middle of the school year is going to complicate childcare arrangements. So I don’t know what is going to happen with that, but it is nice to at least be able to make a contribution, however small, to its success.
Tammy finished up the school year just two weeks ago. The Saturday following her last day of school we headed to San Francisco for the weekend. I accomplished one of my New Year’s Resolutions, I saw my first show — Wicked, at the Orpheum. It was AMAZING. It was only scheduled to run through June but now they’ve extended the run through September and I am DYING to go back. Initially we had just discussed going up and back, but we decided to splurge a bit — we haven’t been away like that in more than three years. So we took the train and stayed the night in the city, it was wonderful.
The girls are doing great — Grace is teaching herself to swim, sort of. We’ve had her in lessons the last two summers; this year we splurged again and got a 15×3 above-ground-pool. She learned to jump in at her grandparents “big pool” with a vest and then came home and within a few days has taught herself the basic dog-paddle and is now “diving” to the bottom to retrieve stuff. She is a natural. She’s talking up a storm, and is a sponge for words — as we were gently reminded when she yelled “dammit!” when she dropped her doodle-pro in the car. But it has its redeeming qualities too — she scolded mommy for saying the word ‘stupid’ just yesterday.
Hope is doing great. Every meal still starts with a tablespoon of butter and at her last pediatrician’s appointment she had “flattened out” on the growth chart — which isn’t a good thing, but during that same period she has also been much more active. She is actually crawling now, she started about two or three weeks ago, and she will follow you to whatever room you go too — slowly of course, but she gets there. She is also trying to pull up in her crib (which is now in the bedroom she shares with Grace). We “think” she is starting to talk, she said “hi” about a month ago and Tammy says she said “car” at EPU last week. But, as with all progress with Hope, it’s sporadic. But she is happy and healthy and just as sweet as she can possibly be. The shift of focus to other activities has really given me a chance to just enjoy having the chance to have a baby for so long. Occasionally I see other children much younger than Hope doing all sorts of things she’s not doing–talking, standing, moving all over the place. It would be easy to fall into the trap of feeling sad, but then I think — they don’t get to hear those sweet, baby coos anymore; snuggle and carry their little one everywhere, etc….and I don’t feel so bad.
So, anyway — that’s the last month or so in a nutshell. I’ll try to get back into the routine.