Our Lifeline in Our Deepest Time of Despair
We had two healthy boys when Shirley became pregnant with twin girls in 1967. Six months after their premature birth, they developed viral encephalitis. One twin pulled through but Lynda had a seizure and suffered permanent brain damage and paralysis to her left side.
Lynda was a happy child who brought us much joy and loved to make people laugh, but her happiness did not come without a lot of hard work and multiple setbacks along the way. Shirley and I had to constantly fight for Lynda's and our family's needs:
- Lynda's paralysis caused her to be unable to chew independently, so Shirley moved her jaws up and down until she could swallow her food. This lasted about two years before Lynda was able to chew and swallow by herself.
- Lynda's left hip dislocated, and the surgery that followed caused her left leg to be 3 inches shorter than the right. I built a room onto our house for Lynda's therapies, where countless hours were spent making her stronger.
- The paralysis on Lynda's left side caused her vertebrae to curve significantly, making it difficult for her to breathe by placing added pressure on her heart and lungs. Local doctors told us that Lynda had only six months to live. Through a connection with a physician at the Center for Disability Services, we received a referral to Boston Children's Hospital, where she underwent two successful major surgeries that stabilized her spine and saved her life.
I worked two jobs to pay for Lynda's medical expenses, while Shirley cared full-time for all four of our children. Without extended family support, we turned to the outside world for help but found resources to be almost non-existent:
- When Lynda aged out of the special preschool program she was attending, we were told she couldn't attend regular school unless we paid for her therapies and a special teacher. Shirley had researched NYS laws and was not going to take no for an answer. She wheeled Lynda into the local Senator's office asking, "What are we going to do about my child's education?" After much resistance, she was told she had to take her case to the local judge, who ruled in Lynda's favor.
- After caring night and day for Lynda for many years, we looked into overnight respite support to give us a much-needed break. I also went to the Senator's office but was told, "We can't start a program for only one person." Meanwhile, I was head of a parent advocate organization and was fully aware there was a need for more than just our child. So I put an ad in the local newspaper seeking other families with handicapped children interested in a respite service, to which I received many letters and phone calls. This led to the establishment of a first-of-its-kind overnight respite program for children in the area.
Again, we did whatever was necessary to support and advocate for our daughter.
But the time would come when we could no longer properly care for Lynda. As she became a young woman and grew accordingly, the lifting and physical care Lynda required became nearly impossible for us. We both had suffered back injuries; and by the time Lynda was in her late teens, we were crawling on our hands and knees just to move her from her chair to her bath or bed. It was a very desperate time in our lives, and it became very clear we could not continue to live this way.
Thankfully, at the same time, Residential Opportunities Inc. (which later merged into the Center for Disability Services) was opening up a residential home that could accommodate Lynda's physical and intellectual disabilities; and she was accepted into the program. Taking that leap of faith to turn over Lynda's care to strangers was very difficult for us after years of fighting for every bit of care she received, but the organization eased our fears. Was everything perfect? No. But the staff worked through any problems with us, and the level of care they provided assured we could all now live a quality life knowing Lynda was well cared for and happy. The Center for Disability Services had become our lifeline in our time of despair.
Lynda is now 50 and has lived in the Center's residence for over 30 years. She continues to thrive; and we are comfortable knowing she will remain doing so long after we are gone. For this reason, we gave a cash donation to the Center's Endowment to support their mission and to ensure others who need the lifeline of the Center, like our family did, will have the same opportunity.
— Ward & Shirley Fellows