Our family took the name Heathen to lovingly lean into what people seem to think we are, what our ancestors were called but not defined by. We are earthbound life lovers, craftspersons, wild foods tenders, deer people. We tan hides and pack horses into the mountains. We are musicians and animal processors, a growing family committed to creating a lifeway we can be proud to live. When Alexander and I had our first son, we enveloped him into our lives with joy and the anticipation that once he could hold his own, he'd be in the saddle with us as he had been in the womb, exploring our beautiful country and all the blessings it extends.
But by the time he was a year old, we knew something wasn't right. He wasnt making any moves towards crawling, couldnt hold any weight on his legs. When Rainan was 15 months old he was diagnosed with Spinal Muscular Atrophy, a genetic disorder that effects his body's ability to maintain and build muscle. He has Type 2, which looks like his highest physical milestone reached was sitting up, and from there he is expected to regress until he can no longer hold up his head, eat on his own, eventually talk or breathe.
Our time together may be limited but we are determined to support him to live a beautiful, whole life, full of people who love him, ripe berries, juicy meat, nature, music and meaning. Some of our lifeway has been difficult to share with him, found in the more remote parts of our country. Some of it has had to shift considerably to account for his physical and medical needs. But even when a pathway becomes impassable with him, we surrender, sit down in the trail and enjoy what's around us before turning back.
We have finally come around to the inevitable conclusion that in order to keep the world beyond where our horses can get us accessible to Rainan, we need to get into a wheelchair accessible van. They are not always so expensive if you can find them used. However, anyone who has ever driven up our road or gone on a scouting mission with us knows that in order for us to maintain the way we roll, we have to have four wheel drive. We are happy to not have a hydraulic lift, what is more important than gadgetry is a safe and capable vehicle that will allow us to both stay in wilder places and, as our first hospitalization has made clear, allow us to drive over the passes even in winter.
Super grateful for your support in helping augment the cost of what will be a very important and hopefully fun and freeing shift in our family's adventures. The little man thanks you too!