While Kristin loves summer, I am completely a “Winter Guy”. Give me a foot of snow over 90+ degrees every day of the week and twice on Powder Days. Of course, I would much prefer to be standing on top of a mountain with a board strapped to my feet, but I also love to watch snow falling anytime, anywhere. With the nearest mountain 10 hours away, my snowboard is securely fastened to the wall of the man cave and this winter holds very little promise. Add in SMA and well, I DO NOT WANT THIS SUMMER TO END.
SMA dictates that we go into “Lockdown,” “See you next spring,” hibernation mode. That snotty nosed, sneezing kid that justhad to go to the mall, carries the germs that would potentially kill my son if he got too close. We can not allow him to get too close. It’s the fragility of SMA that I hate the most.
Last year we went into lockdown without much of a fight but then again, we had hardly gotten out even in the summertime. This summer was a completely different story.
This summer we have lived.
I don’t know if I can describe the feeling of getting out of the house for a simple walk after having spent 2 years, more or less scared to do so. I don’t know if I can describe the beautiful sparkle in Jadon’s eyes when he stares at the trees and sky. I don’t know if I can describe how much we dread staying home all winter. What I do know is that it has been one great summer!
It was a long process of getting the right equipment, getting our act together, and getting our courage up. We didn’t get our adaptive stroller until August last year and didn’t get the equipment tray for under the stroller fabricated until November. Throughout the winter we improved our set up with portable ramps for the van, better batteries, and an inverter and marine battery for the cough assist to be portable.
We were “mobile” in time for spring but it was after our first trip to Madison that we got a new Bipap machine (Trilogy). The Trilogy has built in rechargeable batteries which changed EVERYTHING. Going from the AVAPS to the Trilogy made me want to do a Braveheart impression, screaming … “FREEEEEEEEEDOM!!!!”
We have taken full advantage of that freedom. We averaged 6 or 7 walks a week and hung out on the deck or front porch daily. We visited Madison, Wisconsin twice which meant seeing Lucy and Stella TWICE as well as visiting the zoo twice. The second trip to Madison also meant meeting some new friends. We went to a couple lakes, several parks, had picnics, ate in restaurants (this is a big deal), had a bonfire, and went to a local petting zoo where Jadon fed a goat, petted a cow, and held a duck. We toured our local fire station where they turned on the lights and siren just for Jadon. We celebrated a second birthday! We surprised mommy at work for her birthday. And we swam!
These are all things that would not have happened if SMA would have its way but we thank God for every day and every special moment. We also thank the SMA families for posting pictures of their outings which served as inspiration for us to venture out. WOW what a great summer!
And dancing we are….