I have tickets to see you at The Ritz Theater in Talladega in September. I was so excited to see you were coming that I secured five tickets. I’ve since broken the news to my husband who is now obligated to attend instead of fishing. I am also bringing my sister, and her boyfriend.
That leaves one ticket.
That fifth ticket is the one I want to ask you about.
The fifth ticket is for my son. Our one and only son is a beautiful, brutally honest, extremely complex, soon-to-be 13-year-old. His name is Owen.
I had Owen when I was 28. Little did we know what the next 13 years held. I first knew something wasn’t right when he had feeding issues in the hospital. His doctors wrote us off as naive first-time parents.
We weren’t. We had no idea, but at some point Owen had a hemorrhagic stroke. His stroke caused left unilateral obstructive hydrocephalus, which is spinal fluid inside the brain. I had to force feed him—holding his jaw shut so he’d latch onto bottles.
For four weeks I took him to the pediatrician to voice my concerns, only to be brushed off as an anxious mother.
I finally broke down and did what doctors hate, I consulted with Doctor Google. I told the doctors, “It’s hydrocephalus.” The doctors thought I was crazy. Until they measured his head, which had grown two inches in four weeks. His brain was under so much pressure that the CT scan looked like a big black hole.
Owen’s first brain surgery was at 4 weeks old. Suddenly, I was transformed into not just a mom but a mom to a medically complex child.
His second brain surgery was at 5 months. Then came physical, occupational and speech therapies. Owen has right sided hemiplegic cerebral palsy. He can hardly use the right side of his body. He also has central auditory processing disorder and a mild cognitive delay.
At age 2, Owen began having bad seizures. Hospital stay after hospital stay, test after test, doctor after doctor, life was excruciating.
By the time Owen started kindergarten, I quit working. Life was crazy and I was exhausted. There’s a funny movie where a mom talks about how she wishes she could be in an accident that’s bad enough for her to get hospitalized, but not bad enough to really hurt, so she could get a break. I could’ve written that line.
Medical appointments, lab work, seizures, medicine, side effects, shunt malfunction scares, hospital stays, therapies, the list goes on.
Owen had foot reconstruction surgery. Seizures increased. Soon, doctors were out of options. Our only choice was a hemispherectomy—a rare surgery where they disconnect one side of the brain from the other. So we passed him to the neurosurgeon at Childrens of Alabama Hospital.
After a few years, he stopped his seizure meds. We thought we were home free. But then his seizures returned.
More tests. More sleepless nights. He needed another brain surgery. This time, the success rate was fifty percent. It was an awful gamble, but we had to choose. So, on my 40th birthday we handed him to the surgeons again.
And now here we are. We just celebrated his one-year seizure-free anniversary. He is seizure-medication free and seizure free.
This is also Owen’s third year at the Alabama School for the Deaf and Blind. He’s in 7th grade, a grade which consists of five 13-year-olds who aren’t all that different from us. Many families like ours have walked this road to Hell and never found their way home.
So I sat down to ask you a simple question, hours ago, and ended up writing this.
You see, right now, my husband and I are on our first alone-vacation. We left Owen with Grandma. My husband is fishing, and I am sitting in an air-conditioned condo, telling a stranger about my problems.
I know the chances of someone actually reading this long email are pretty slim, but I think I just needed to get it out.
So about that 5th ticket.
Owen has never been to a concert. I thought your show may be a good starting point. Do you think Owen would enjoy your show or should we leave it to the grow-ups?
If you’ve read this far you are an extremely patient, thoughtful and kind man. Thanks for your time.
Bring him to the show. And for the love of Owen, let me hug all y’all’s necks.