And in the 16th year of Nicholas’ new normal, New England called us back.
Twenty-one months after my big brother’s fall from a tree, subsequent traumatic brain injury, and with my parent’s blessing, I moved from Massachusetts to Colorado. There was always an expectation that I’d come home when and if I was needed, and history will show that I* have done this, willingly.
However, I always knew there would be a time that I’d need to move home or be asked to move back. To be physically present. To help more. To be more available. For my brother, for my parents, for my sister. Then, while I was in Colorado the “I” became a “we” and Jon and I took on the reality of having our families back in New England together. The irony of choosing to move to Vermont during a pandemic when I can’t actually help my parents or my brother is not lost on me. Here we are, three hours away and a world apart.
Why move now? Because we wanted to move back under our own power before there was a need, while we can enjoy our families and aging parents to their fullest. We want to be in Vermont. Why? This pandemic has been hard on Nicholas and my parents. Even though I can’t take the daily burden away, being closer just feels right. My parents worked tirelessly to set up Old Farm Rockport, a place where Nicholas lives with 24/7 caregiving. A place he could call his own, allowing my parents to reclaim their house and their lives a little bit more. However, since March of 2020, Nicholas has been back at my parents house with his caregiver, Jackie… Saint Jackie, Jackie the Earth Angel. This means that my parents are once again “on”. Care for Nicholas is not a one (wo)man show. He’s a sweet and agreeable guy but he needs help all day, to walk, to eat, to bathe, to communicate, to move, to interact with his environment. This means my parents, in their mid 70’s, are back on the clock.
Early on in Nicholas’ injury I resolved to support my parents every step of the way. Their well-being became my priority, while they focused on my brother. I hope that being closer to all of them will help disperse the burden of care in the near future, when vaccinations for COVID-19 make it safe to be physically close again. The plan is for Nicholas to return to the group living situation after he is vaccinated, but even when he lives under a different roof, he still has a brain injury. It’s still been sixteen years of the hardest work we have know, sixteen years of one step forward, 2 steps back, sixteen years of problem solving, sixteen years of missing the first version of my big brother every day, sixteen years of coping.
It’s no surprise that pandemics are hard on all of us, but to the disabled and their teams, it’s unfathomable. As if brain injuries are not isolating enough, add mandatory isolation from the community for an indefinite amount of time and it’s a recipe for depression, impatience and ultimate extinction of the small and functional world that was once created within which Nicholas could participate. Even as I sit here in Vermont, I know my family in Massachusetts is digging deep on patience and resilience and there is nothing I can do. I continue to be at arm’s length away from Nicholas’ day to day needs, I recognize this. It’s a process to figure out how and when to help and I’m (we’re) here for it.
Brain injuries continue to be the worst. My family continues to be the best.
*Every time I write “I” in this blog, it could be substituted with “we” and for that, I am truly grateful for my teammate in life.
It’s 2021 and my decade-long break from fundraising is over. For years I ran the Boston Marathon and raised money for Spaulding Rehab Hospital, the incredible organization that helped Nicholas reach his fullest potential after his devastating accident and now I’m back at it (well not the marathoning part). For the next three months Spaulding has put forth physical challenges for the team to complete. I’ll be doing the work in hopes that you will support myself, my family and our tremendous network of healers at Spaulding. Thank you.