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PWS has had a profound influence on our family dynamics. It’s hard – indeed, impossible – to constantly ensure everything you do and say meets the emotional needs of one person, lest there be a massive meltdown. It takes a toll. Often times, everybody's patience is worn thin – especially when we're all in the same house for a few days, like a long weekend or summer vacation. Frustration, resentment, exhaustion and sadness can dominate everything and result in a complete and total loss of perspective. I read a parenting article once that asked readers to recall a particularly challenging day with their child; a day when they struggled to hold it together, when they felt overwhelmed. We have been parenting with that level of intensity for years. Nobody’s psyche can hold up under that kind of concentrated effort and pressure. And so other aspects of my life began to break down.
My mental health.
My friendships.
My marriage.
Greta has been in residential placement for eight months now, and some of those aspects of my life have shown considerable improvement. Others were beyond repair, and I’ve had to create – and am still working on accepting – a “new normal”.
These days when we spend time with Greta, I feel like we have more good times and laughter and light-hearted moments than we used to. Of course we had times like that before, but the constant intensity always seemed to overshadow the positive. It was easy to feel crestfallen and overwhelmed, and hard to recall the good parts.
This is not to say everything is hunky dory when we’re together now. There are still meltdowns and anxiety and demands. But because we don’t have to be vigilant 24/7, we have a little more of an emotional reserve to draw from.
It’s interesting, though. Even now, when things get intense with Greta, I’ve observed that we all – Michael, Annelise, and I – revert to our old emotional selves: frustrated and accusatory; anxious and fearful; exhausted and teary.
Recognizing that emotional reversion in times of stress was an “ah-ha!” moment for me. Now I try not to automatically fall into my old pattern. Perhaps my efforts will help to change the attitude/approach of others in our family unit, perhaps they will not. I know I can only control my own behaviour.
For my part, I feel like I’ve gained a more realistic perspective on life over the last few months, and I’m learning to take better care of myself. Case in point: over the last few weeks I’ve made some significant changes to my diet, and I’m feeling much better for it. And I aim to focus on the moments that matter most: the fun and loving moments with my kids, the mountain view on my dog walks, the time spent with friends. Some days, you REALLY need to hang on tight to that stuff.