It’s hard to believe the end of March is near.
Towards the end of February, I planned to write a column highlighting people with disabilities in conjunction with March being Developmental Disabilities and Traumatic Brain Injury Awareness Month.
But by the beginning of March, caring for and loving my daughter with developmental disabilities and brain injury was just about all I could do to promote awareness.
Life is the best teacher to make us more aware of the needs of others — if we choose to see them —that’s why awareness helps and representation matters.
These media campaigns remind us that there are people walking-and wheeling- around us who deserve our respect, our support and admiration for the feats they conquer in everyday life.
Families like ours and people with disabilities need not only your prayers and encouragement but also your voice and your vote to support programs and legislation which protect the services our loved ones need to survive and live a beautiful life.
Thankfully there have been some excellent advocacy days cosponsored by Assemblywoman Jodi Giglio and Councilwoman Missy Miller with grass-roots organizations and nonprofits on Long Island as well as rallies in Albany. These public servants are working alongside local advocacy groups to oppose Governor Hochul’s budget cuts that threaten the services and care our loved ones desperately need.
On Monday, March 27 you can participate in advocacy to voice your concerns for people with disabilities with some simple tools shared on social media.
And if you are ready to dive in to understand the sordid history of New York State’s treatment of people with disabilities that we are trying to avoid, I suggest you watch this documentary on Willowbrook — a state-sponsored institution for children with intellectual disabilities that was exposed 50 years ago for horrific abuse. The exposé was a catalyst for change to support people with disabilities in New York and all across the United States.
I warn you: it’s terrifying to watch — especially as a parent of a child with disabilities. Thank God change happened. Still, it’s very necessary to remember, so we never go back.
A lot of people view others with developmental disabilities and/or brain injury from afar.
The van that drives up with a group of adults accompanied in public by aides for a social or shopping experience can either be a heartwarming or an uncomfortable example how we interact with others.
For me, it’s both. I am equally as comfortable with people with disabilities as I am uncomfortable with the thought of the tough challenges they face because of public perceptions, state budget cuts, and the exhaustion that families experience when caring for their loved ones at home.
In our home, every day is disabilities awareness day and this month in particular, I am increasingly aware of the challenges my daughter faces each day.
Most parents of children with disabilities think they are prepared to face the challenges ahead because the ones we’ve already faced help to strengthen our knowledge and resolve. Life teaches powerful lessons if we let it. We learned resilience by the struggles we faced advocating for my daughter’s health care and special educational needs.
I never knew I had an aptitude for medicine until I learned to read my daughter’s brain scans and understood that the dark pools of expanding fluid and the bright white spots were signs of bleeding and pressure building up in her brain.
Things I took for granted in my other kids’ maturation — like balance and eye/hand coordination became goals to work towards with repetitive tasks that once seemed mundane and now held so much meaning.
I remember the day I sat at my daughter’s bedside while three doctors removed a breathing tube after she woke from a coma. I held my breath awaiting hers as I cried out; “Johanna, breathe”! Jo’s head fell towards me and our eyes locked as she took that first deep breath on her own. I swore to myself that I’d never take breathing for granted again.
We built our first home on the North Fork with ample room for our family of six — a colonial with an open concept kitchen and living room and a steep staircase to the main bathroom and bedrooms on the second floor. The steep staircase was okay when my daughter was a young child with three older siblings and two adults near at hand to help her navigate each step.
But after the older kids moved on to college and careers, four hands never seemed steady enough to help Jo up and down the stairs. The final awareness came for me when I broke my knee and was forced to crawl up and down those stairs for six weeks. I quickly understood how inaccessible our home was for our daughter’s growing needs.
Some families of loved ones with disabilities face diagnoses that stay constant and don’t change much over time. But most of us whose loved ones also have brain injuries from disease and surgeries or trauma experience many declines that can sometimes be difficult to manage even if we think we are prepared.
After my broken knee injury, we sold our home and moved into our current home, which functions on one level for all of Jo’s needs. But we quickly learned accessibility requires planning ahead for worst-case scenarios like needing to use a wheelchair instead of a walker.
Every time I help my daughter get ready for the day, I am grateful for those who helped us to create a handicap accessible bathroom that meets her changing needs. Some days she can stand in the shower while holding onto the bars, while other days she needs the seat. Every day, she is safe at home.
These past few months, Jo has suffered a decline because of ongoing struggles with brain hemorrhages, shunt malfunctions and wounds that refuse to heal. In the past few weeks, her motor skills have been seriously impacted affecting her ability to walk and to hold her body up straight. Even though she is petite, it’s difficult to help her move without equipment. We have a great walker and a wheelchair/stroller we use for any distances outside our home.
But this most recent decline has sent us scrambling.
The hospital sent us home with a hoyer lift to get her into bed, but it’s just not working for us. We are trying out different wheelchairs for inside the home and making sure that the one we use outside can handle the backyard tasks for our favorite farmer as she collects her eggs from her precious chickens and visits with her goats.
Jo’s needs help us to make even more changes to our home and our property to accommodate her and our friends who visit us monthly for programs through our non-profit; “Johanna’s Hope”.
Jo leads the way to inspire hope.
Jo always needs some kind of support. Thankfully we have built-in supports and wonderful aides to help. As Jo says, “Some of my friends became my aides and some of my aides became my friends.”
We are all here to help Jo and others and to increase awareness and respect for all people with disabilities even as we care for my daughter. I am personally glad we have a month to highlight awareness and advocacy for people with disabilities like my daughter.
But for us, this month and these days are the same as every other. It’s all about loving Jo and her special friends and families and doing the next right thing for all of us to enjoy this beautiful life.
All our lives are so much better for loving Jo.
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