We hope you enjoyed following Ben's Journey! It's been amazing to see the effect of his trip at home. His sense of power and independence is through the roof. He sees his limitations and his struggles in a little bit of a different light. He proclaims that this injury will not define him, and he will never quit on himself. That is tremendous. Cathy and I are through the moon, and we know that really, this is only the hangover effect, in a few months, in a few years, the full power of the program will be laid to bear on any obstacles he has to face. 

 

Today's obstacle is a surgery. Ben's legs spasm so badly they nearly knock him out of his chair. It's no way to live frankly. So, he received a pump that will deliver one of his medications directly into his spine. No more oral medication for spasms. This will be a journey in itself. A few days of intensive time in the hospital and then weeks and months of intensive PT/OT to learn how to 'use' his now flaccid legs. Albeit incredibly large and heavy legs. 

 

As parents we are mad and sad that this injury just won't find a baseline, but I think that is a fool's dream for the near future. We still need to find a caregiver, we need to help Ben with the angst that still exists, we need to support him as he tries to get to Oregon in the fall, and we of course need to somehow take care of ourselves.  BUT, we can't help but see that while we are on the teacup ride right now being spun around, we will soon at least be on a solid track of a roller coaster. 

 

As always, thank you so much for your support. It's desperately needed! Steve and Cathy

 

P.S. Give Jay a solid moment of your thoughts too... imagine growing up with one of your siblings, through no fault of his own, demanding so much of your parents' attention. It's not easy for Jay in the house...