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I’m not sure if the moral support of friends and family made it any better. I felt too guilty, too overwhelmed, too unsure to absorb any of it.
My husband and I had spent the last month transitioning our 13-year-old daughter with Prader Willi Syndrome to an out-of-home placement. This was the day she would start living there full time.
I reminded myself that a key to Greta’s well-being is to have calm, well-regulated caretakers around her. Moments of calm or connection in our household were few and far between; our family was under such duress that no one was calm or well-regulated. And how long could we keep patching the wounds of Greta’s rage cycles and protect her and our other daughter? In residential care, however, trained staff worked within a robust support structure, able to recharge without the personal responsibility of 24-hour care.
For years I kept hoping our tireless dedication to all the therapies and strategies would stop the proverbial bleeding, but there was no evidence that real progress was happening. I felt defeated. While it was clear we had to try a new path, I was afraid that a residential program meant I had given up on Greta – that we were throwing in the towel and had failed as parents.
But after carefully weighing all the factors for and against, and honestly assessing our own diminished emotional reserves, my husband and I made the heart-wrenching decision to place our daughter in a residential program.
Earlier that day, an email went out to all of our friends and family that said, in part:
Although we are strong in our decision, it is a time of grieving and we are looking to you to help lift us up. I fear the grief may be too much at times, so please don’t hesitate to remind me that we are doing this for Greta and for our whole family, so that we may be healthier and happier. Also, please remind me it’s okay to feel sad and to be seriously pissed at PWS.
There were fleeting moments of a sense of relief, but the grief was deeper and the guilt was stronger.