And so tonight, Prader-Willi syndrome struck again. The pantry was left mistakenly unlocked and almost an entire loaf of bread demolished in just a few moments. It is not enough to be vigilant. This happened right under my nose in broad daylight, only one room away. One-minute, I can hear Andrew laughing and playing with the cat until he spies the unlocked pantry. And voila, a loaf of bread disappears – all because the Prader-Willi goal is to cure the hunger. There is no point in punishing Andrew. He is driven by a genetic demon that he can’t control. The rest of us in the household find ourselves refocusing after disaster.
Refocusing after Disaster
Whether it’s a quick glance or a tug, all persons in the household are responsible for the locks. However, I am human, and a very exhausted one at that. I make more mistakes than I prefer, sometimes jeopardizing the safety of my child.
I have three choices:
- Beat the crap out of myself for the stupidity of leaving the cabinet unlocked, or berate other parties who might also have been forgetful.
- Relieve my stress with sugar
- Strive to do better, move past the debacle, and keep moving ahead and climbing the mountain.
Tonight, I chose to do all three. After beating myself up with words and with mental images of my son scarfing bread, his cheeks so packed he was unable to speak, I relieve my anguish with sugar. There was no chocolate in the house this evening but a few tablespoons of sweetened condensed milk sufficed. This alone will be a true punishment for myself because I am allergic to milk. I will pay for it tomorrow and then berate myself some more for choosing sugar over a healthier choice – like going for a stress-freeing walk.
Later, as I watched Andrew sleeping peacefully, I vowed that I will ‘never’ in a million years commit the Prader-Willi cardinal sin again. I will always double check to make sure that all locks are secure. A lock will “never” be left unlocked. Ever. Again. Period.
…… and so the trek up the mountain escarpment continues.
Forgiving ourselves is essential.
Progress not Perfection
As parents, we try so hard to be perfect and to provide the safest environment for our children. Our goal as Prader-Willi parents is to secure food and control the behaviors of the syndrome. The task absorbs all our energy. We can’t let anything take our eyes off our goal and like athletes, we focus on the finish line. Parents of a child with Prader-Willi syndrome live with the tension of what we want life to be like and what life is. We are fooling ourselves with the promise that we will never make the same mistake again. But we will. It will either be in a different form or maybe even an exact repeat. We have to forgive ourselves and move forward.
What counts is how we run the marathon and commit ourselves to run to the very end. We have to accept that trials and exhaustion are a part of life. I try to re-focus my energies, not on the incident that occurred but instead by asking the question, “What can I learn?” This simple shift of focus allows me to keep a positive attitude even in the midst of a trial. With this change of thought, I have a purpose for the calamity. Refocusing after disaster, means that I am not concentrating on my mistake that caused Andrew to veer off-course, but rather I am looking for a lesson that I can use to make daily living better.
I screwed up, the outcome broke my momma’s-heart but now it is time to move forward, after all, I am also striving for progress, not perfection. Right?
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