Some of us become parents by chance. Some become parents by choice. But no one I know chooses to become parents of a child with a disability.
When that choice was made for us 23 years ago, our world instantly changed. There was no preparation, no training, no idea that anything other than a normal, healthy fetus was developing. From the moment Ben arrived, we were continuously given a laundry list of problems with no path or guidance to resolving any of them.
Despite our lack of special-needs parenting credentials, we learned to quickly adapt and to not take “no” for an answer. Through divine intervention we found the drive to push through time after time to provide Ben with every possible opportunity to grow and develop. This often meant just sheer will and brute force on our part to make things happen but we could do it and we were successful because youth was on our side. We could pull all-nighters and survive on little sleep for days at a time. As young parents with two other children, we were used to it.
A New Approach is Needed
That approach worked well in our 20s and 30s but it doesn’t carry over very well now that we’ve crossed the half-century mark. The mind still says “yes” but the body says “not this time”. The deep desire and obsession to ask, “What’s the most I can do?” is ever present but the energy, the stamina and resilience to carry things forward has waned, and there’s nothing we can do about it.
When Jan and I talk about what life will be like when we’re 60 or when we’re 70 and Ben is up all night because of the flu or is having seizures, the tactics of pulling all-nighters and doing whatever it takes won’t work. Our bones already have too many miles on them. While I know this to be true and I know we need to figure it out a new strategy, I resist doing much about it. That would signal a defeat of sorts and a true admission of the scary reality that we, in fact, are getting old(er).
This pseudo-denial of mine and lack of preparation hit me between the eyes about a month ago.
A Painful Dose of Reality
It happened without warning and in the most benign of circumstances, as I reached to pull the last weed from the flower garden. The muscles in my lower back had had enough and, in a flash, tied themselves in knots. I mean super tight knots as the pain shot through me from head to toe. I stood up to stretch thinking the spasms would subside but they didn’t.
I was in rough shape.
I came inside and slapped a heating pad on the painful areas hoping to get relief. Nothing. I alternated between ice and heat. Nothing. This was going to stay with me for several days, or so I thought.
That same night, Ben did not feel well and stayed awake all night as he usually does when he’s ill. Needless to say, I didn’t sleep either, worried of what might transpire and eager to help him however I could. My back pain was not as unsettling as the anxiety that was bubbling up inside of me of what was wrong with Ben. That anxiety reached a peak as he had a seizure the next morning. Sleep deprivation and epilepsy is a bad combination.
As that week wore on, Ben’s condition gradually improved but mine got worse. The pain increasingly expanded in breadth and intensity. No amount of hot baths or muscle relaxants touched the discomfort. No position was comfortable – sitting, standing, lying down – which meant no sleep was possible.
By the third night, the pain reached a peak so intense that I thought I would pass out. I had broken bones and strained ligaments before but this was something new. Relentless, unforgiving and starting to really concern me. As I lay in bed that night, unable to close my eyes, I realized that I couldn’t help Ben if I tried. I was useless. I couldn’t even stand for more than a few minutes without the pain bringing me down.
Forgot about how I was going to care for Ben when I was 60. I had no idea how I could care for him for the next week.
It turned out the pain I was experiencing was coming from the femoral nerve that runs across the hip and down the front of the thigh. The muscle spasms in my back were so powerful that day that they locked up the lower portion of my spine and placed a tremendous amount of pressure on this nerve. Picture jamming your hand in a window as it is closed shut. That’s what was happening to the nerve. Even after the muscles returned to normal, the insult to the nerve would take weeks of physiotherapy to undo.
Prepare! Prepare! Prepare!
It was quite unnerving (pardon the pun) how something as simple as a little gardening could turn my world upside down. It highlighted how unprepared we would be to care for Ben should something serious happen to either one of us. The procrastination would have to stop.
I constantly pray for my health and Ben’s health. In a strange way, I would say those prayers were being answered by telling me to focus on preparing for whatever comes our way. None of us know what tomorrow will bring.
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Mike, thanks so much for your post. Preparing for our children’s future is something we often procrastinate on, because what each day brings is enough to keep us more than busy! But the years keep rolling by. My husband and I are in our 60’s now, and we are so thankful that we took the time to get Joel lined up for SSI and Medicaid so that he can get the help he needs when we’re no longer able to give it. He has grown by leaps and bounds since moving out of our home into a home of his own with 24 hour staffing (Safe Haven Farms). Yes, it’s hard making that transition, but so much better than making it under the duress of a hospitalization or death of a parent.
Thanks, Kathleen. Indeed, the years do roll by and aging is not always fun. So great to hear about your son and how living away from home has helped him to grow. I don’t know that I could make that leap for Ben … at least not now but will always do what’s best for him. Whatever happens, I know we can’t leave it to chance and hope things work out!