We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family. Always nice to be in such a welcoming environment.
We were scheduled to be in Aruba for New Year’s, basking in the love and affection of perfect weather and beautiful beaches. But, Maggie got sick. She wan’t going to come anyways. She was supposed to stay with Grammy and Pops. But, it’s hard to leave her considering how difficult she is on a day to day basis when she’s feeling great, it’s even harder when she’s sick. It was compounded by what we believe was another seizure. Apparently they get triggered by sickness, if it was a seizure that we observed (I’m not a doctor). Whatever it was, wasn’t the sign of a healthy kid who would be able to adjust without her parents for a week.
As we were discussing whether or not we should still leave her and go on our little vacation, we both realized we forgot our passports. So, even if we wanted to go, we wouldn’t have been able to. At least we can chalk it up to being dumb instead of unlucky. We’ve chalked enough up to being unlucky in the recent months.
And it’s a good thing we didn’t go, because the night we were supposed to go, Maggie decided not to sleep. At all. She just wanted to play. I have read about that as a symptom of Rett – nighttime is party time for many of the girls – but it wasn’t something we had experienced. At least she was happy and giggling throughout the night. Though the next day she was a bit of a mess, understandably, as a result of the exhaustion and all. I hope it’s not a lasting thing, and is just an isolated incident as a result of her being sick, but who knows?
Aruba would have been nice. But, it will have to wait. Really, just being able to spend some time together was the primary goal. Unfortunately that will have to wait too.
As a result, I think that’s a new year’s resolution for both of us:
Be more present for each other. It’s hard, dealing with all of the other things we have to deal with on a day to day basis, but it’s important and we do our best.
My other new year’s resolution is – no surprise:
To Cure Rett.