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It has been 16 days since Greta moved into Huntington House full time.
These past five or six days have been some of the most difficult in my life. I feel sadder now that I did when Greta’s placement became “official” two weeks ago.
Week one was not as bad as I expected (but I had pretty low expectations). By the start of week two, she was taking daily baths with very little or none of the usual drama. The frequency and intensity of her meltdowns had decreased. When I visit or FaceTime with her, she seems calm, happy, more at ease than I’ve seen her in a while. And – fellow PWS parents, you’ll appreciate what a big deal this is – she has even been drinking a bit of water each day! She had a field trip last Monday that was attended by one of the house staff, and it was the best field trip day she’s had in a year.
I’m trying to stay focused on those things. I really, truly am. But I can’t seem to. Instead, I feel bogged down in grief and sadness and anxiety.
I am tired. All the time.
I have to push myself to get out of bed. And when I do I don’t really care to do much, even shower and get out of my pajamas.
My emotions are raw. I am weepy.
And I’m stressed from the burden of acting as the “hub” for all the transitional issues that arise:
School transportation – this has been an ongoing issue because of all the changes. A new route meant a new driver, but we didn’t want to start immediately. Then when we did, the teacher had to call house staff to come after school most days because of behaviour issues (and the driver couldn’t take her). So now we’ve switched to the driver taking her in the mornings and the staff picking her up after school each day. Each one of these changes requires multiple communications and confirmations by me, and involves a variety of calls and emails from me to house staff, principal, teacher, driver, and transportation office.
"Growing pains" – With such a major change and so many people involved in her care, there are bound to be kinks that need to be worked out. I know that. But it’s worrisome to hear that someone called in to cover a shift was eating in front of Greta and talking about food in ways that stress her out. It’s me that has to craft an email to the supervisor when we’re concerned about whether she’s getting enough physical activity. It weighs on me to hear that she’s cold in bed at night, or that she's having nightmares. All of these concerns are passed on to me, and I am the one who has to decide how best to deal with them.
Although it shouldn’t be a big deal, I find it exhausting to be the one coordinates haircuts, field trips, doctor’s appointments, flu shots, providing money for discretionary items, school transportation, visits to Greta by other family members, updating staff protocols, and so on.
And even my visits with Greta take a certain toll on me. They take time and planning, including 45 minutes of travel time for each visit, childcare arrangements for Annelise, emotional energy, and sometimes having to deal with heartbreaking questions like, “Will I live here forever?” and “Please can you stay for dinner?”.
A couple days ago, staff took Greta to the salon for a haircut. She was already out of sorts that day, and having her hair cut is NOT a preferred activity. It was bumpy, but she made it through quite well… until we got back to Huntington House and it was safe to let ‘er rip.
She had a major meltdown that involved a lot of hitting, screaming, name calling, lots of throwing, and, at one point, repeatedly hollering “I want to die! I want to die!” I sat in the house office behind a closed door while the staff dealt with it (very well). It wasn’t anything I hadn’t seen before at our home, and after she recovered we had a really nice hour together.
But that night when I was alone at home (M had taken A to the Flames hockey game), all the stress and pain and grief came out and wouldn’t stop. Two days later, it still feels like it could come raging out at any moment if I were to let it.
I’m tired of the exhaustion that comes from feeling so emotional; the pressure of managing so many moving parts; the stress of being the “issue raiser” and problem solver. All of these things leave me feeling sad and just plain wrung out.
It comes in waves, and when I’m not even expecting it.
I remind myself of all the wonderful things I’ve seen the staff do and how they are with Greta. I try to focus on how well she’s adjusting and how already there are improvements in her behaviour. But the next wave always seems to wash all that away.