“I don’t need help; I can do it myself!” Those words might sound like something you hear from a child asserting his independence, but those words actually came from me. When it came to bathing, giving medications, administering medical procedures and protocols with and without equipment and really taking on the overall care for my two boys, I thought I could handle it — all of it (with my wife’s help, of course).
That was several years ago. I have since changed my tune. I now know that it actually takes a village to provide the constant care and support that both our boys need.
Before Ethan was born, Nick, our oldest son with special needs, didn’t require much beyond the everyday routine of daily living skills support — self-help care, giving him his oral medications and dressing and feeding him. Fast-forward six years and we have three children — two with significant medical needs that require daily visits from multiple people, who resemble pack mules carrying suction machines, oxygen, CPT vests, nebulizers and 22 daily medications while pushing a wheelchair and IV poles, all to monitor for the boys’ safety and well-being.
Honestly, the relinquishing of control and my boys’ care to others actually sent me into a downward spiral of depression. I felt sorry for myself and trapped in my own home. I hated the revolving door of nurses, attendants, therapists and others. They were like intruders, and I often felt like a guest just trying to stay out of the way.
But when Nick’s condition worsened two years ago, the way I perceived these people and help in my home all changed. I can’t pinpoint the exact instance. Perhaps it was the evolution of my own growth as a parent with two children with special needs, but I was — and still am — able to embrace our family’s uniqueness and the constant support we have from others. Each week, four therapists, eight nurses and six attendants cross the threshold of our home to love and care for our children, and we are so blessed to have them.
So I begin this new year with a tremendous amount of gratitude for these amazing people who provide incredible care and make it so I can own and relish in my role as Dad.
In fact, it was because of these fantastic individuals that we were able to take a small family vacation in 2016.
Every year for the last decade, our family has attended the Joni & Friends Family retreat, a getaway for families affected by disability that offers accessible activities such as swimming, tennis, hiking and more, in east Texas.
Last year, however, we didn’t think the retreat was an option for us. If you’ve kept up with this column, you know that Nick’s care has exponentially increased in the last year; he requires round-the clock nursing support. But he loves the retreat, and because this year might have very well been his last opportunity to go, two nurses and one attendant made it possible for our entire family to make the five-day trip. They worked 12- to 16-hour shifts, dispensed meds, changed central lines, pushed formulas and more. But more than that, they helped to support my boys so that they could feel like part of something and participate in something fun.
This is but one example of the extraordinary people we welcome into our home and our lives. These nurses, therapists and attendants have become a part of our family and have forever bettered us. So I want to start this year with a giant thank you to the heroes in our life and in our home: Tru, Kelly, Anita, Edwin, Michelle, Genny, Rebecca, Matt, Alec, Morgan, Jamie, Anna, Lisa, Stacy, Jan and many more……Thank you from the bottom of our hearts. Your continued love and support for Nick, Ethan and our entire family have kept us afloat and make each day doable.