Sometimes I dream of the perfect blog post. And then I wake up.
I’ve never been the kind of person to keep a pen and paper by my bedside to write down my nighttime ideas. I should be, but I’m not.
I dream and they seem so real and important. I dream of therapy sessions, new technology, specialists that make amazing breakthroughs in Roa’s development. I dream that Roa is walking and talking. I dream that he is free from his body that doesn’t cooperate.
Such sweet dreams. And then I awaken to his yell for help. Good Morning: Roa-style.
He is always smiley. Always wakes up with a grin and sleepy eyes sparkling, long body, stretching…even on the nights he sleeps poorly.
So we start our day of carrying him to the bathroom, feeding him his breakfast, attaching that freshly-charged Dynavox to that freshly-charged powerchair and he is off to live this life. A life that’s not such a dream, but we power through! Day by day.
Having those dreams makes me ponder the amount of magical dream-worthy procedures, devices, therapies, and doctors we have encountered on this journey through CPLand. For eight years now, I read and research and calculate the risk, financial commitment, travel, and time issues for visiting different specialists, doctors, and therapy settings.
We are tired. It has been an emotional journey. I will call it a learning experience, yet one that hasn’t been very fruitful. Costs ranging from thousands to hundreds of dollars…. time ranging from weeks, months, to years of intensity… we just don’t find a whole lot of life-changing dream-works.
Would I take back anything we have tried? Nope. We can scratch it off the list. We saw small changes…tiny earthquakes I call them. And for that, we are always grateful.
Yet these changes we encounter are in a battle… an ever-present race against time and growth. Growth of this boy’s body. Man, has he grown!
When people visit, and I bend and stoop to move his 72 pound, husky frame (built like mom and dad) they watch in awe or look away uncomfortable.
How do you do it? They ask. Like I have a choice. I lift, carry, bend, and move my sweet boy through his life. When I get a break, I gladly take it and Daddy takes over.
Then I can rest. Settle in. Pick up my iPad and begin the search for the next dream-worthy procedure or device that might change our life in CPLand.