Last Saturday we loaded up our SMA world and headed south to Beaver Lake. “Ready or not” we were on our way and we wondered if our hosts, Rob & Anissa, were ready for our invasion. They have been there since day one of our SMA journey and they grasp the intensity of our life, at least as well as anyone not living with SMA can. From the time we arrived at the “cabin” they were incredibly supportive and helpful. Their catch-phrase for the weekend was “We get to do this all the time, this weekend is about Jadon.” They told us to take our time and never rushed us for anything.
We were joined by Anissa’s sister, Hayet, and her boys, Patrick and Henry. Patrick and Henry are the sweetest,most adorable boys and have shown so much interest in everything Jadon. It was Henry’s 9th birthday and he wanted to spend it with Jadon. He even bought balloons for him, because he knows how much Jadon loves them. By the end of the weekend both boys learned how to suction Jadon’s oral secretions, something not many others have ever been allowed to do.
Saturday was very relaxing as we settled in, enjoyed some quiet time, ate some amazing food (prepared by chef Rob) and thought about the task at hand the following day. A relaxing boat ride would not typically be considered a “task” but with SMA everything becomes a task, even the relaxing awesome things.
Getting out and doing things is always more difficult for an SMA family as we rely on electricity more than the average family. With the lake level down, the walk to the boat dock would prove to be a challenging, sandy, muddy and unstable trail. Jadon can come off of his ventilator only for short periods of time. He is typically off just for transfers from his bed to the living room, or to his stroller/chair. We don’t typically carry Jadon connected to the ventilator (although many families do), but this “Dance in the Rain” moment would require us to do so as the terrain was much too extreme for his stroller. The trek would also require everyone to carry something – his suction machine, pulse-ox, cough assist, ambu-bag, oxygen tank (emergency only), bedding, backpack with all his supplies, oh and of course his little sister, Gracyn. Everything had to be carried at once so it was on the boat when Jadon got on board. We knew it would be a challenge, but we felt the reward would be well worth it.
The trip was most certainly worth every effort. To see him so peaceful and relaxed within the amazing surroundings was overwhelming satisfying. To watch Jadon’s eyes light up with excitement, well, we would do it all over again.
A trip to the lake most often results in relaxation and happiness.
This was a different kind of happy, a deeper kind of happy.
This trip made us SOUL HAPPY.
Thank you Rob and Anissa for allowing us to experience this amazing weekend.