In the same boat

Today another PWS mom reached out to me.

Susanne* is a single mom who lives in a small town in Nova Scotia and has a 16-year-old daughter with PWS. We have been Facebook friends for a few years so she is aware of Greta's residential placement, and this morning she sent me a note on Facebook Messenger:

Stephanie, I don’t know the details about Greta’s recent move, but I believe I may be in a similar situation and I’m wondering if you’d be willing to talk with me about it.

Lisa has become more anxious and aggressive lately. Although Lisa goes to visit her father every second weekend, I’m done in. Kate was violent again yesterday and my safety was in peril.

I’m trying to decide if I can manage to keep Lisa home with me or whether I try to cope with the guilt I would feel placing her in residential care. It’s a difficult situation.

I called Susanne and we spoke for nearly an hour. We have so many common experiences, so many common emotions. As she was describing some examples of her daily life, I told her I felt like she was telling me my own story. We talked about how so few people really “get it”, how so few people truly understand the constant pressure, planning, and exhaustion. We are definitely in the same boat.

Nothing in Our Lives Ever 'Just Happens'

I told her the story of taking Greta to the dollar store to pick out Valentines for her six classmates. The outing went well, but by the time we got back to Huntington House, Greta had had enough. She was getting a bit tired, a bit overwhelmed, a bit anxious for snack. Nothing major, in fact pretty low on the “Greta scale”. But as I ramped up my mental and emotional energy to deal with it, I immediately felt exhausted. Drained. The change in me was remarkable.

Shortly after we returned to Huntington House from our dollar store trip, it was time for me to leave (I had to get home for Annelise’s after-school bus). As I got into my vehicle, I burst into tears. I felt relieved that I didn’t have to muster the strength to get Greta through to bedtime. I felt relieved that I wasn’t the one who would have to create and execute a plan to help her get those six Valentines written over the weekend. And I felt guilty that I felt so relieved.

And Susanne said, “Stephanie, I know. Nothing in our lives just happens. Everything has to be pre-planned and then adjusted.”

The daily pressure to always try to stay one step ahead. To plan. To be flexible in order to meet Greta’s ever-changing needs. To constantly be “tuned in” to what she’s saying, how she’s feeling, what she needs. I honestly didn’t realize how much of a toll it has taken on me.

And in terms of Greta’s move, it is still EARLY DAYS. There’s still a lot of emotion and guilt, despite the obvious benefits I’ve seen for her there. We’re still working out some kinks with how things are done and how staff communicate with us, but it’s all moving in the right direction. They’re open to our feedback, and we’re open to theirs.

For my part, it also still feels like early days in this change. I’m only just starting to feel more rested. I’m only beginning to get a bit of perspective. I’m only just starting and beginning a lot of things.

Anyway, back to my conversation with Susanne. I told her the whole story about Greta’s out-of-home placement. How the discussion began at an RCSD (Regional Collaborative Service Delivery) meeting. How our FSCD worker told us about this agency. How when the people from the agency came to our house to meet us it was a real turning point. How I struggled with the decision and how I still struggle. How it has changed so much in all our lives for the better. And how I still struggle… I told her how well Greta is doing, both at school and at home. And how I still struggle…

We promised to speak again next week and ended the call. Afterwards, I emailed her some documents, including the social stories we used and the “Greta Bible” I developed.

She emailed me back and said, “Thank you so much, Stephanie. Our chat had a big impact on my day and my decisions.”

So that’s good. It's good to know I was able to help someone, and it's good to know I'm not alone.

*Names & other details have been changed to protect the privacy of the individuals discussed in this post.