As most of you know already, Brennon, (my oldest) is from my first marriage, to Scott Grover. Scott grew up not knowing his real father, so in an effort to find out the medical history and maybe heal up some wounds during his childhood, I found his real father, when we were both 22 years old. Scott and I separated when Brennon was 6 weeks old, (on good terms) and so the journey begins.
Fast forward to 2003. Brennon had gotten glasses by the time he was 2, and I met and married Casey, when he was 3. We were living in Michigan, and Brennon started seeing “spots”.
He was 10 years old, and in the 4th grade. I took him to the Optometrist, who informs me that his retina appears to be “detached” in his right eye, and that I had to get him to Grand Rapids (on a Friday and in traffic) to a Retina specialist..in the next hour. They made the appointment and we were on our way. I can’t tell you the panic I felt driving on the way there..I’d been able to handle so many other things. Cuts, stitches, (we had 2 other boys at the time) and was usually calm, but a retinal detachment??? How did this happen? Did he get hit at school and he just didn’t tell me?
About a month earlier, he had been at his Dad’s for the summer, as per our custody agreement. His Dad had been to the retina specialist, as well, and found out he had Stickler’s Syndrome. It is a hereditary disease, from his real father’s side of the family. Thank god I found them because we would have never known..
So, I take him after racing to Grand Rapids, and sure enough..it looks like Stickler’s Syndrome as well. What in the world is that? What do I do? Who do I reach out to for guidance or support? Nobody. Everyone from the group that I could find were in Minnesota and that’s where the Stickler’s clinic is, and where the name came from for the disease.
I have never felt so helpless..I had to take him to have surgery the following morning, in Grand Rapids, so they could attempt to reconnect to the retina. The doctor explained to me, that he had two options..either gas bubble in the eye to heal it, where the child lays face down for 6 weeks, in order for it to heal, or I could do the oil bubble that doesn’t work as well as the gas, and he’s not as limited. Ok..that surgery worked..I had to get a special head rest for him to use on the bed, to have his face down for 6 weeks. Casey (my husband) put the tv on the floor, face up, and if you can imagine a tube tv facing up..yeah it was a job. LOL.
A couple of months later, Brennon came home with the same issue, from school. This time, the doctor wanted to send him to a Dr. Capone, out of Royal Oak, Michigan, who was more experienced with Stickler’s Syndrome, and could hopefully get the retina to stay in place.
This time, we tried the oil bubble. It’s all still a blur, but I know that with a 4 year old son, 3 year old son, and a 6 year old daughter at home, it was a challenge. That, and my husband was working full time, and his job couldn’t allow him any time off, more than 2 days at a time.
The oil bubble didn’t take, and back to Royal Oak for more surgeries. By the time we left Michigan in 2004, Brennon had 5 surgeries in that eye, with the last one unsuccessful. Got to Virginia and Brennon was entering the 5th grade for the second time, due to surgery setbacks.
We immediately got Brennon an appointment with a retina specialist, here, when we moved. He recommended that Brennon’s surgeries be done at Wilmer Eye Institute, which is a division of Johns Hopkins Hospital. They are a Stickler’s educated hospital, and knew more about the surgeries and the disease, than the doctors here.
So, we decided along with the doctors here, that it was too far gone, (the retina in the right eye) to even attempt to save it. After so many surgeries, you get scar tissue build up, which Brennon did, making a chance for a successful retinal attachment, damn near impossible. It was heartbreaking, and I would have traded with him, at any time. All they had to do was give the word, and I would have switched places with him. I think that’s any mother’s sentiments when their child is hurting or has to suffer with any disease or disorder.
By this time, Brennon was in the 7th grade, and kids were starting to ask him what was wrong with his right eye. (it was blind, so exceptionally smaller than the other one) It was so frustrating to him, to have to explain it to the “new kids” or to strangers, who didn’t know his “story”. Right around the time we were thinking about the right eye, and what to do, his left eye started the same thing. He was at school, and saw floaters, and I just died. Just thinking about how his life would be altered if he lost vision in the left eye, that he depended on so MUCH???!!!!
Brennon panicked, as you can imagine why..he was, after all, a teenager, who enjoyed looking at things. Girly magazines, (lol) he was awesome at video games that required so much hand/eye coordination, and better than any of us with both eyes!
So, we went up to Baltimore for the first surgery. My dad drove, and paid for the hotel and meals and everything. I’m so in debt to him..he really is my “angel”, and my “rock”. I had no idea where to go, and there was no Facebook, or Google maps..just a good old fashioned land line phone and a road map. Baltimore is 4 hours North of us..in good traffic. In Dc traffic, it can take up to 7 hours. J
So, after the first surgery, we had been going to Church and Brennon (who as a teenager was without any particular religion) asked for the preacher to come to our house to pray with him. He was in fact, completely blind, until his left eye healed. I had to bathe him, help him walk, help him get dressed. Then one day, he picked up his guitar, and this being around November 2006, he started playing, by ear. I was trying to find some type of outreach for him, but to no avail.
I broke down and bought the IMDB “premiere pack” and found the email address for Jack Black’s manager, Bam Margera’s Manager, and Rob’s..from Rob and Big, on MTV. I told them I wasn’t after money or anything, and that Brennon was facing complete blindness, at the age of 14, and I was wanting his “heroes” to call him and cheer him up.
We went to his follow up appointment here, that Friday, and found out that the retina had once again detached. ONE week after surgery.. it was devastating to him, and I couldn’t believe not ONE word from any of his heroes. Actually, I had honestly forgotten about it..but I know he didn’t.
We got home from the bad news appointment, and Brennon was on the couch, just so depressed and down, thinking he’s going to be blind for the rest of his life. 14, and he hadn’t seen that much of life yet, nor had he experienced it.
I just so happened to check our voicemail, and there was a message on there, and the caller id said “Thomas J. Black”. Ok, who the heck is that? So I listen to the voicemail and its Jack Black, himself, calling Brennon! He said (I wish we still had the MP4 of it because it’s so epic ..LOL) “Hey, this is Jack Black. I understand that Brennon is a big fan of mine, and is a guitar player, like myself. (something along those lines..I can’t remember verbatim) Then he said “You’ll have to excuse me ..I have a babah (baby) laying next to me, and I’m tired. Have Brennon call me when he gets this message so we can talk.”. Ok, how do you tell your son that his IDOL called him, without him going into complete cardiac arrest?? I was in shock. It had to be a joke..and HE left his number on caller ID???????????? So, I told Brennon, and he instantly cheered up..and wanted to call him NOW.Brennon called and from then on, a mentor kind of friendship blossomed. Brennon calls him whenever he wants, and its normal to us..and nobody believes us, so its all good. HAHA!
So, Brennon started playing guitar more, and Jack sent him a PICK of destiny, and a couple of other goodies from the movie, and a t shirt. Utter EPICNESS. He got better at playing guitar, was out of school for 6 weeks, and his retina healed. Thank god. Upon Brennon’s return to school, Brennon’s 7th grade teacher, Tanya, wanted to plan a surprise party.at school. His friends were all going to be there, and all of 7th grade! How exciting!!!!!!!!! So, we went to the school, and they were all in the cafeteria, and the new channel 13, and Kathryn Barrett, all came to catch it all on video, and to get an update for viewers, of his eye status.
Brennon joined an academy of rock music in the fall of 2007, got better on the guitar, and learned many new songs, all self-taught. He played with the Academy of Rock, and they named their group the “Blind Luck”..appropriately named.
By the time Brennon was 15, his right eye had taken on such a “nucsience” status that we made an appointment for Brennon, to have enucleation surgery, (doctor who takes eyes out..surgically) where then he’d get a lens cover made by a local artist…it’s like a contact lens made of glass that matches his other eye, identically. We went and got his eye removed, and a conformer put in its place, with the muscles in the eye socket sewn to it, so it would move just as the good eye..from left to right ,and up to down. Its different from a glass eye because you can’t remove the conformer. We paid the guy to paint the lens, $2000 and got Brennon an eye that looked identical to the other one. It’s amazing..even now.
David LeGrand was his name and he’s amazing..if you ever need a lens painted..so good at what he does. He’s out of Chesapeake, Virginia. (little plug there..I know)
Brennon has been back to the retina doctor, once a year for checkups, and whatever they did back in Baltimore, in 2007, was magic, because he hasn’t had anymore issues with his left eye, since. He has even gotten his driver’s license! He works for York County, loves his job, and loves life, and has a beautiful girlfriend, named Kayla, who I hope he marries ONE DAY! :-)
He still plays his guitar, and still talks to Jack, but he’s more grown up than most kids his age (he’s almost 22 now) because of all that he’s had to endure from such a young age. He’s my hero, and my inspiration when I’m having a bad day. All of my kids are honestly, but this is “Brennon’s Story”, right?
