Brain Injury means you get a lot of “people.”
Alexis’s life revolves around many “teams.” Therapy teams usually consist of 10 or so people. Our team of doctors is about 5. Her team at school is about 10-15 people. To make our day-to-day lives run smoothly it takes a few extra bodies everyday. If I had to guess, I would bet we have about 150 “go-to people” that we need or have needed in the last 8 years.
Having a lot of people is amazing and stressful at the same time. There’s a lot of sharing of personal information. Most of that information is documented in files across many different systems. I often feel like we completely open ourselves up to a lot of judgement of the decisions on how we parent. The irony that I am posting all of this isn’t lost on me.
But having a lot of people also means that you have a lot of support. We’ve spent two years short of a decade watching families and individuals endure major injuries and illnesses, and the people that thrive are the ones that are surrounded with massive amounts of love and care. I’m here to tell you that we are one of the luckiest families when it comes to support.
One of the things that I am most proud of is the school that Alexis goes to. She is in 3rd grade and has yet to come home and say that she has never been included or that someone has said something mean to her. Her biggest complaint is that she has to give so many hugs during the day. I am so thankful for all of the great staff and teachers that have helped facilitate such a safe environment. But something has to be said about the parents of these children. A little over a year ago, Kloefkorn Elementary raised money to buy a metal slide so the kids with cochlear implants could go down without worrying about static knocking out their hearing devices. But a mother of one of the students said she didn’t really care about the slide because her child had other disabilities and couldn’t use any part of the playground.
The playground is ADA approved, but was not easily accessible. Alexis was one of those kids that had a hard time playing on the playground. I was invited to the meetings about making the playground more inclusive, but I couldn’t ever make it. But there were several mothers that went full speed ahead to make a playground that everyone, even kids in power chairs, could use. Less than one year and $55,000 later, Alexis is participating with her peers at recess more than ever before. Awesome. But here’s the thing…none of those mother’s had children that couldn’t play on the playground if they didn’t have special equipment.
They didn’t do it for just Alexis- they did it for the good of our community. But there were kids in Alexis’s class that did their own fundraisers and put in their own money for this playground.
Supporting each other can make some pretty amazing things happen. Having a brain injury and multiple disabilities shines the light on support many times a day.
Alexis’s recovery is NOT a product of just our family. It’s NOT a product of only medical intervention. Her wonderful life is a product of what love, hard work, great communication, technology, prayer, determination, and knowing that there will always be hope and possibility looks like. It is everyone collectively believing those things together. That is simply amazing.