By Michael Lozinski, M.A.T., ATP
Today was a day just like many other days. A CBVI client here, a school evaluation for an AT device here, and a home accessibility evaluation here. The travel time seems to go by fast, as I have Spotify, Howard Stern, and phone calls to consumers and case managers to pass the time.
When I arrived, I was met by the child’s father. He welcomed me into his house with a smile and was a great joy to be around. As we discussed his needs, he went on about how his son needs 24-hour monitoring. A nurse is provided to be there between 9:30 a.m. and 5:30 p.m. However, his son is on oxygen and needs to be monitored throughout the day when the nurse isn’t available. This duty has fallen on his parents over the years. He is in and out of the hospital’s ICU for months at a time. When he is there, they don’t provide a 24-hour nurse either, so his mother sleeps on a cot at the hospital throughout his entire stay. He went on to explain that his son has gone “code blue” more times than he can count. (For those of you that don’t know, code blue is pulmonary failure.)
Dad started feeling comfortable enough with me that he decided to share some of his story. His son was brought into the hospital with bacterial meningitis when he was 7 months old. It nearly killed him then. It left him with brain damage, CP, and every other complication that you could think of. Dad later asked a doctor when his child was only a couple years old, “What are my options for my son? Will we be able to take care of him? Is there a place that would better be suited to take care of him? What’s the life expectancy for someone with his condition?” His doctor mentioned that there was a place up in Connecticut that he knew of that would be well suited for someone with his needs. Connecticut? His dad wasn’t going for that. He reiterated the question about life expectancy. The doctor reluctantly answered with his estimate of “14 or 15 years old at best.” His dad looked at me and said, “We took him home that day. We haven’t left him since.” He’s 38 years old today.
He continued. “Imagine if I sent him away to Connecticut? We wouldn’t be here talking today because there’d be no one left to talk about.” He went on talking about how they’d never been on a vacation, went to the movies, or done any kind of family activity that most families are able to partake in. I hesitated, and was about to ask him, “Do you have any regrets not being able to do those things.” But I stopped myself before the words came out because I already knew the answer. He was prouder than any dad I have met before or could ever hope to be. Right before my eyes stood a true hero, not a hero you’ll ever read about in a newspaper, or a hero that you read about doing their job in the line of duty. This man was a true hero of humanity, of valor, and of family.
I teared up a bit (in true big Mike fashion), as I knew that the man standing in front of me was far stronger a man than I’d imagined ever existed. His son has never said thank you to his father, never hugged his father, never had any ability to show his father love. But his father persists. And that is the definition of unconditional love.
On the way out, I shook his hand and told him how greatly honored I was to meet him. He obliged and said it was a pleasure to meet me as well. It’s funny how someone like that can make you feel like every little thing that goes on in my world, my stresses, my problems, they are just so insignificant.
Oh yeah, so anyway, back to the eval. His main request from DDD was that he get a camera monitoring system in his son’s room, so that he and his wife could have the luxury of sitting together in a room to watch a movie together, or share some time on their patio. All while having the ability of viewing a monitor to make sure their beloved son is still alive. I’m hopeful DDD feels this request is not only warranted, but well earned.
Mike is an assistive technology specialist serving the central New Jersey and shore regions. Before joining Advancing Opportunities, he worked as a computer technology teacher for grades K–8. He holds a Bachelor’s degree in philosophy from The College of New Jersey and a Master’s degree in teaching from Monmouth University. He is a Jaws Certified Specialist. At Advancing Opportunities, he provides assistive technology evaluations and training to children and adults of all disabilities, so they can be successful in school, work and at home.
