by Jeanine Johnson
In my blogs, I often write about Easterseals, the students and the miracles I see on a daily basis. Recently I have been thinking about the life coping skills we can learn from Easterseals’ students. My daughter Autumn, who is currently one of Easterseals nurses, started out as a therapy aid. She had the opportunity to work closely with the students and I believe it gave her direction in what career she would ultimately choose. She left Easterseals and obtained her nursing certification. She knew she would lean toward working with young children. The opportunity opened and she returned to Easterseals. Autumn has in the past year and a half been hit with some life-changing health issues. First, she learned she has non-diabetic hypoglycemia, then was diagnosed with Elher’s Danlos Syndrome and lastly Mass Cell Activation Syndrome) (MCAS). With each diagnosis, I watched her pivot and adjust to a new normal.
I try my best to check in to see how she is coping because, while she seems to be adjusting well, I’m sure there are days when it’s overwhelming. She went from not having any medical equipment to having to wear MAFOs and in order for her not to lose her ability to walk independently, she is required to use a wheelchair for any extensive trips. Elher’s Danlos Syndrome is a condition where your connective tissue is too stretchy and cannot support your body properly. I am relieved that Autumn’s diagnosis does not affect her heart. She was wise enough to join some forums with people who have the same conditions and has been able to get great practical advice from people who are living and functioning with various issues.
We made a video call to our favorite Easterseals graduate Mung. (You know he’d make an appearance in my blog somewhere. 😊 ) He was confused as to why Autumn used to be able to walk and can’t now. Autumn explained to him that she can still walk. She told him that it’s like his muscles are very tight (he has CP) and hers are too loose). She told him she must wear the mafos for short distances and use the wheelchair for longer outings. Autumn, Mung and I met up at the Franklin Institute for the Harry Potter Exhibit. It was Autumn’s first trip taking her wheelchair in an Uber. (She got enough good advice to pick one that would be easily portable when needed). Our reunion was as fun as ever.
We could have never guessed that Autumn’s time at Easterseals would prepare her for what has been a life-altering period. She said about the students here “They always give us perspective” and in her silly voice said “Ain’t nothing that bad!” Attitude is everything! I’m grateful for Easterseals and the students and proud of and motivated by my daughter!
I guess she gets some perks, in the picture below she is in the wheelchair-accessible section at the Elmwood Park Zoo and she’s close enough to “Kiss the Giraffe!”