The Ripple Effect
Events can take on a life of their own…though not always on our timetable
Do you ever feel those days where you can’t get outside of your head? The days you are dragging, going through the motions, wondering if what you do even matters? If things will ever get better? I certainly have.
Especially when my kids were little and I was scared, sleep deprived and stressed. Nothing ever changed. Getting out of bed was an act of will.
And I’d think, This is my normal. For the rest of my life I will always be responsible for my son Jack who has special needs. My own personal life sentence with no possibility of parole.
My friends had been liberated from changing diapers years before, but that would never be me. Each day would be forever marked in 2 ½ hour intervals, the time I had between Jack’s changings.
Placing my then-8 year old son Jack on the toilet before I gave him a fresh diaper, I’d sit on the floor, mentally calculating how many hours I spent in the bathroom for bodily functions not even my own.
I’d marinate in frustration, I could write the great American novel with all the time I spend caring for Jack’s never-ending needs. (I could’ve taught the master class in self-pity back then, because writing such a tome has never even been a goal of mine.) Years of caregiving stretching out to my eventual demise.
I’m sure I was real fun at cocktail parties back then. Oh wait, I forgot. I didn’t go to any. I had no social life. Teenage babysitters with the ability to care for Jack didn’t exactly grow on trees.
I felt like nothing ever happened. Nothing would ever change.
Yet sometimes incredible events can come together in ways that we can’t even imagine in dark times. Unfortunately, they won’t happen on our timetable. Sometimes the effects can take years to reveal themselves. That happened to us.
Years before Jack received any sort of concrete diagnosis, our family bumped into a man pushing his developmentally disabled adult son in a wheelchair. We were all waiting for an elevator to a parking garage.
We smiled pleasantly at each other and then the man looked over at Jack and said, “Oh, is he an Angelman’s kid too?” His son had received this genetic diagnosis. Our elevator came, we went to our cars and we never saw him again.
Yet he changed our life.
As we drove home, I googled Angelman Syndrome. And others like it. Mike fell down the rabbit hole of researching genetic disorders and reaching out to specialists. Our hope soared. This was a sign. It had to be.
We eagerly made an appointment at our hospital’s genetics department, our first visit in 8 years.
Our fragile peace with never knowing what Jack had was shattered by that man in the Kenwood Mall. His question inspired us to endure a new round of genetic testing. We wanted to believe science had caught up with the mysteries of our son.
That stranger and his question took on mythic proportions.
We waited impatiently for results that would take weeks to obtain. Technicians took countless vials of blood from a stoic Jack and sent it to the lab.
They looked for 86 rare genetic syndromes. Surely they’d find something. After all, that unexpected meeting of the man by the elevator seemed like a sign!
But then the genetics counselor gently informed us, Sorry, there were no matches. Come back for a follow up in 3 years.
Mike and I were crushed. I felt silly and depressed at having imbued a stranger with other-worldly qualities. Like he was sent from Heaven to tell us. Who was I kidding?
Fast forward 3 years.
This time they had even more sophisticated genetic tests which took months to return. So we waited and I hoped we could check off this box and get on with our lives. It would be negative. It always was. My heart steeled itself against disappointment. We’d been down this road before.
Yet this time was different.
Against all odds, Jack got a diagnosis.
Which led us to a tiny private Facebook group for parents of children with Smith-Kingsmore Syndrome.
And inspired our creation of this website, vetted by researchers and linked to the National Institutes of Health (NIH).
And through Mike’s research of Jack’s genetic syndrome, we embarked on a promising, yet untested and undocumented treatment in April 2018.
So we created daily tracking sheets and monitored results which we compiled for our doctors so they could help our son.
Thanks to the Fitbit we strapped on Jack for sleep data, it uncovered undeniable proof of the bizarre sleep side effect of his meds, making his already less than ideal sleep worse. So we found Jack’s sleep specialist who rounds out the team of our amazing doctors.
Right before our appointment, this sleep doctor just so happened to have read a recent study where genetically altered mice were given the same medication Jack takes. Their similar genetic makeup to Jack, coupled with his exact medication, produced the same results we saw in our son. And the Fitbit gave us the data to prove it. This research paper, coupled with our appointment, served as the catalyst linking our sleep doctor with our geneticist and neurologist.
Now these 2 separate and distinct departments at Cincinnati Children’s collaborate on cases involving genetic disorders and sleep issues. In the past 5 months, 30–40 children have been impacted by this partnership and this number is expected to grow. And protocols are being developed to systematically target the sleep problems in these kids.
All because one man waiting for the elevator asked us one simple question to see if Jack was like his son. Quite a lot of ripples.
If you had told me when Jack was screaming and banging his head around the clock when he was 5 what our life would look like today, I’d have never believed you. And I might have thought the ripple effect happened to other people, not to me.
You may be struggling right now like I was back when Jack was little. Maybe you have small kids or are dealing with hard core medical issues. All the while you may be grieving the reality that you and your child will have a different path in life than is typical.
That’s hard and I wish it didn’t have to be like that for you and your family.
Just hang on.
That’s all you might be able to do right now and that is enough. Your love for your child is a ripple in itself, demonstrating to all who know you, an example of how love really is a verb.
And who knows? Maybe today is the day that you meet your own stranger, one who asks you a question that changes your life.
I’m the mom of 2 great young adults, as well as of a very spoiled plott hound named Bubba Sue. I grew up in New Jersey, but have lived in the Cincinnati, OH area for the past 18 years. My husband Mike and I have been married for long enough not to look like our wedding pictures, but even after all these years, he still makes me laugh. After 15 years of questions and no answers, Jack got a diagnosis of Smith-Kingsmore Syndrome. I wanted to write this blog to help special needs families know they are not alone.
