By Dawn Graczyk
We were slow loading up to leave. In part because I was doing my best to be meticulous, in part because my brain was fighting a battle about whether or not we really should go.
My thoughts sound like this:
If something happens, you are on your own with strange doctors. You know how much fun strange doctors are. And where would Anneliese go?
You realize the Russians chose this week to hack the pipeline. Are you REALLY still going? Can you imagine how gas prices are going to go up?
You only get a paycheck once a month now, so there is no buffer. When it’s gone, it’s gone. It’s pretty much gone because bills are going to be due in a couple weeks.
Maybe you should call it off.
Is it Too Late to Call it Off?
But for better or worse, it is too late to call it off. Too much planning, kindness and excitement surround this adventure. It would crush the girls to cancel. No, this is happening. I can’t help but feel that God wants this to happen. Even with all the chaos and events that seem to scream at me to stay home, the outpouring of love and investment of Spreading Sunshine and many others pulls me forward.
I have so many fears. I fight nightmares so badly that I take one of the strongest meds I can just to sleep at night. During the day, I am able to set them aside because my family is my heart, and they need me. There are things here, now, that must be done, and it keeps me moving. But no, I am never fearless.
Our victory is in laughter and perseverance. It is in choosing to go forward and take hold of all we can along the way. It is resting when we need to rest; crying when we need to cry; allowing ourselves to feel defeat but still getting back up. We always get back up.
Driving across the US in a van that is literally duct taped together is less intimidating than the other fears we face every day. I suppose this is a blessing in its own right.
What I fear most is coming. I am powerless to stop it. I’ve fought for the last couple years to find a way to change the future. I’ve made myself rather a nuisance to our health care team, who somehow has not given up on me, but in fact, has become one of the greatest blessings in our life.
However, there is a point in a war when it becomes apparent that the outcome is determined. I’ve arrived at this point. We are heading to the end of a war I can not win, in the way I most want to win it.
GOING is the Victory
Our victory will not be a reversal of the damage this disease (FA) has caused. It likely won’t even be a halt in progression.
I continued with my checklist: underwear; toothbrushes; headphones. Check. Respiratory equipment, meds, stethoscope. Check. Tickets to Disney because Lord knows we can’t afford civilian rates (Disney really does treat the military well); bottled water; chargers. Yep, all there. Doctor’s letters, community DNR. Yes. We were ready.
The first offensive in our victory was simply GOING. We made a statement to this hateful disease. We walked up the world’s steepest and biggest ramp to reach Fluffybutt Cookies. Seriously, Columbia, I don’t know anyone in a wheelchair that could have pushed themselves up that ramp.
Laughter Overcomes Discouragement
I carried the wheelchair down stairs because the elevators, quite logically, open to a set of stairs (this is actually quite common). We wound up on a third floor, outdoor balcony, locked out, and facing three flights down (I did not push the wheelchair down these stairs).
When Marissa wanted to ride the eagle on the carousel, we ignored or brushed off the looks of onlookers as I lifted Marissa over my head to get her on the carousel. Darn it, she wanted to ride the eagle, and she was going to ride the eagle! We laughed getting off, because I had to lift her down and carry her as a man would carry his wife across the threshold of the carousel and back to her chair. And we LAUGHED as we did it.
WE LAUGHED, and we took away the power of discouragement. We were victorious.
Yesterday ended with Marissa and I feeling exhausted. Of course, Anneliese was still overflowing with energy. She loves her sister though and made no complaints over watching movies while I collapsed in bed. WE WON.
Our victory is in laughter and perseverance. It is in choosing to go forward and take hold of all we can along the way. It is resting when we need to rest; crying when we need to cry; allowing ourselves to feel defeat but still getting back up. We always get back up.
Click to learn more about Riding on Sunshine.
