We weren't going to go.
There's too much stuff...too many machines...too many responsibilities.
We changed our minds several times.
Before the summer began, however, we decided that if we let SMA stop us from visiting family at their lake house on Lake Chautauqua in New York then we may never allow ourselves to enjoy life's pleasures because of SMA.
We went.
We packed up Ava, Henry, and Ella. We filled the Odyssey with clothes, traveling "toys", Ella's 311 lb. power wheelchair, her various machines, her day-to-day supplies and headed east. A road trip like none other any of us had ever experienced.
With Ella's pulsoximeter (this measures her heart rate and oxygen levels) attached to her big toe, she rode like a champ for the 8+ hours to the lake. Ava and Henry held their own as well. Excited and delighted at the prospect of spending time with Gramma & Grandpa, Auntie Annie and Uncle Noah, Auntie Sarah & Uncle Brad, & cousins Connor and Johnny, the three of them asked us the infamous question uttered by all traveling children, "Are we there yet?"26 times!
It wasn't easy yet it was possible to travel with SMA. It was a victory over the battle that SMA continues to wage at us--the battle of it trying to take our lives away at every moment.
The disease threw some curve balls at us; the threat of lake water infecting Ella's g-tube site; the vomiting in the car; the heat causing her to work extra hard to keep cool and maintain head control; a long drive that keeps her diaphragm crumpled up for long periods of time; and so on...
Lindsay and I did the best we could against everything that SMA hurled at us. We had plenty of protection for her g-tube site; we knew how to handle the vomiting; we kept her cool and rested throughout the day; we stopped for driving breaks and had her car seat adjusted to maximize positioning; and so on...
We also had family. People who enjoyed being with us; who enjoyed taking our kids into a new world, one they had never seen before...the world filled with the charming essence of a summer lake house and all it has to offer.
Yes, traveling with three kids under five with one of them having special needs was extremely difficult...yet we are glad we made the trip for so many different reasons...
 |
| Auntie Annie & Ella |
 |
| Auntie Sarah & Henry |
 |
| Ava |
 |
| Ava & Grandpa fishing off the dock |
