Tomorrow is Prader-Willi support group day. I’m not dreading it, but I’m not exactly looking forward to it either. I suppose I should have expected that there would be times that I would be ambivalent about the group and should have considered that before I started it.
One of my favorite bloggers made a comment today on an unrelated topic, but as I began to think about tomorrow her words crossed my mind:
“Life’s ordinary rhythms are returning after the Prop 8 battle and vote diagnosis, but they don’t crowd out the heaviness that has characterized its aftermath (at least for me). They just kind of sidle up to it, and keep it company.”
We’re quite beyond the diagnosis phase, and with the exception of the periodic check-ups with the geneticist and endocrinologist and the routine pediatrician appointments, we’re done with all the other special doctor appointments and follow-ups.
I have a beautiful baby girl who is still very much a baby. It’s nice that we had the experience of Grace reaching all of her milestones right on target, or even a little early because it made us aware of how quickly they grow up. I don’t mind that Hope isn’t sitting up or crawling just yet, I’m glad that we still have to carry her everywhere and that her hypotonia means she can’t squirm as effectively out of our embrace as her sister did at this age. I’m glad that she’ll be in our room for much longer than we had planned. I’m glad that kids with Prader-Willi have extra-small feet because who doesn’t love baby feet? Hope is barely a size 1 foot, we’re going to get to enjoy tiny baby toes for a long time.
Maybe it’s selfish of me, but it is my “silver lining.”
The heaviness of Hope’s diagnosis is never far from me, much as I would like to forget about it for a day–just one day. I worry about Hope being defined by PWS in the eyes of others–but who am I to judge? Sometimes I define her by her diagnosis. Everybody says that this is just a phase, that even though the Prader Willi never goes away, the way it looms so much bigger than everything else will. Eventually, I am told, the Prader Willi will just blend into the rhythm of every day life and other things will become the “heavy” that crushes the mood.
But I am impatient and so I spend most of my time trying to will myself into that future reality. I think that is the reason that the monthly support group, the weekly OT,PT, and early intervention appointments have become such a drag to me. They’re buzz-kills. It’s not that I’ve managed to will myself into a total denial of reality, just to a place where reality is “alright.” The remaining appointments and the support group remind me that it’s not alright, I’m not o.k. with this, and my lingering resentment is bigger than I let on…even to myself.