It’s the fraction of a moment when you first wake up where things are full of potential. Look out a window, take a deep breath, yawn, stretch, sigh, maybe pray for a moment or simply be.
And then reality sweeps in. The crushing weight of … fear, loneliness, grief, hopelessness. Futility.
I remember a time when this wasn’t a challenge. When getting up in the morning just was. Work. Eat. Sleep. Repeat. And all was as it should be with the world. I never had cause to consider it would ever be another way.
When Lo came into the world it was evident that genetic anomalies were at play. And while it meant early intervention, visits to more “-ologists” than I knew existed and a future of therapies and support services, the most exhausting part was the evening when it was time for me to go to bed.
Going to sleep meant being one step closer to going through it all. Again. Another day of doctors, therapies, advocating, researching, plus the more joyful but tiring aspects of parenting – not to mention the fact that Lo is a second child so there was another child already running about needing to be cared for.
I began to dread the evening hours. That moment when the TV is turned off and everyone is ready for sleep. It wasn’t the lack of rest ahead or the emotional or financial cost that would cause the anxiety but the anticipation that for a moment, first thing when my eyes open, there would be moment of bliss. Of having forgotten. Of seeing the world as it once was and, for many, still is. It was knowing that the bliss would last for only a fraction of a moment before being squashed by reality while I watched.
Eventually we grew beyond this, Lo began to thrive. The critical issues taken care of, her limitations overcome and school life settled into. There came a time I never though would arrive – where I could actually forget she had a unique genetic condition. Now, 11 years in, we can go a long time without the name of the syndrome even coming to mind let alone be voiced.
Mornings became mornings. Evening was no longer torture waiting to happen. It’s amazing what you don’t notice is gone.
Until it comes back.
