My daughter Nora is only 6 years old. Like all young children, her future is still a tightly coiled question mark. It would be foolish to look at a child so young and claim to know what her future will hold.
Let me tell you what she’s like at this point in time. Like most kids her age, Nora loves Mickey Mouse and all things Disney. She also loves ice skating, swimming, jumping on a trampoline, getting pony back rides, chasing after her brother and sister and playing with the iPad.
Nora’s sense of humor and independent streak keep us laughing and on our toes.
I’m sure many lucky people can relate to the delights of raising a loving and cuddly little girl!
What’s different for Nora is that she presents with multiple disabilities as a result of being born at 24 weeks and weighing less than 1 pound at birth.
After surviving months of hospitalization and several surgeries, Nora’s health has stabilized. However, she still requires assistance and supervision at all times due to cognitive disabilities that make safe decision-making difficult.
Nora is unable to eat by mouth and requires lengthy tube feeds to stay alive. She has balance and coordination problems secondary to a stroke she suffered early in her life. Nora’s sensory dysfunction makes loud sounds, smells and lights almost impossible for her to tolerate at times.
Even as she grows older and her skills improve, it is possible that my daughter may need specialized care to continue to live a healthy and productive life.
Our family is well-able to care for Nora, and of course it is a blessing and our great pleasure to do so. My fear is for her future. Who will care for Nora when we are no longer alive or physically able to do so at home?
I panic when I stop and think that my spouse and I are not immortal and my precious daughter may still need care beyond our time on Earth. Nora is young and I can’t imagine anyone outside our family providing care for her, but I know that we, as parents, will not live forever and we may well need help.
Do not fool yourselves by looking at my situation as a predicament you couldn’t find yourself in. We are all one traumatic brain injury, illness or stroke away from needing care, and so are our typically developing children.
The physically and cognitively disabled communities are not an exclusive club and unfortunately no one knows when he or she might become a member.
There are 12,000 people in New York State still waiting for appropriate, supportive housing, and many of these individuals are being cared for by aging parents. That staggering number does not include the many individuals, such as my Nora, who are not on the waiting list.
New York State currently has a surplus. Our lawmakers have a fiduciary and moral duty to provide for and protect society’s most vulnerable citizens. State lawmakers have the power to end this terrible situation.
My hope is that by the time my daughter may need care, this shameful waiting list will be history. Families cannot be caregivers forever.