Brennon, my oldest son, and his rare eye condition..Stickler's Syndrome..

                 Brennon was the happiest baby..but always showed symptoms of not 
being able to see good. At the age of 1 1/2, my Mom took him to the eye doctor's. Little did any of us know that it was the beginning of a very challenging and disheartening journey..that he'd come as far as he has..but this is his story, and I hope it inspires someone..

Brennon Alan Grover, 2/17/93

First Christmas pictures taken at Walmart. 

                                       The Mastermind behind the retina calls..Dr. Keel! Love him! 

Brennon jamming out..I see Uncle Tommy's head..LOL. 

 

Brennon tuning and laughing at Ryan..the drummer. 

Before the show..Brennon and Justin playing pool..he's my best friend, Pat's son,and my Godson. :-) 

Brennon at "take a kid to work day" at Rite Aid in Michigan..Casey's first store. He was Assistant Manager. 

Haileigh and Brennon taking a break from the work..LOL. 

Brennon having fun, taking the trash out! :-) 

Me and Brennon, Christmas of 1994. He was almost 2. I was a single Mom, had just finished Nursing school, and was working full time at Value City..life was good. Can you tell? See that SMILE? 

Our little family, in 2002, at Alan's wedding, Casey's brother. See Brennon's eyes? Big glasses..

        Brennon's story..with Stickler's Syndrome..

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. We were living in Michigan, and Brennon started seeing “spots”. He was 10 years old, and in the 4^th 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,and scrapes, 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 5^th 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 7^th  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" and  I had no idea where to go..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. 

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 one week post-op appointment and had found out that his retina was detached again..that the surgery didn't take.  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 EPIC-NESS.  He got better at playing guitar,  was out of school for 6 weeks, and his retina healed.  Thank god.  Upon Brennon’sreturn to school,  Brennon’s 7^th grade teacher, Tanya, wanted to plan a surprise party school.  His friends were all going to be there, and all of 7^th 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 nuisance status that we made an appointment for Brennon, to have enucleation surgery, (removal of the right eye that was completely blind) and  then he got 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? 

Brennon, Haileigh, and Lil Casey at Scott's house, in Tennessee, when we picked him up from visiting. 

All 6 of them for Kay's birthday, in 2013. Brennon has had no issues with his eyes since that last surgery in 2006, at Johns Hopkins, and his peripheral vision is good enough to drive..he has a good State job, bought his first brand new car, that he saved up for, (2014 Honda Civic, with the BIG navigational cameras..) and he's just doing so good! I'm so happy to be able to say that! He's been through HELL and survived it! :-) 

What its like to be a Mom to 6 kids..

Being a Mother to 6 kids...

Where do I start? Ok, at the beginning..

I had always been the little girl, who wanted many kids when I grew up. I took care of neighborhood friends, and was always an "ear" to anyone who needed one. I had many baby dolls, and some of which, I smothered with hairspray and perfume, in order to care for them. LOL. 

I started babysitting at 11, (yes, I know but I was this tall and the mothering instincts kicked in when I was 8) and soon had all of the neighborhood parents wanting me to watch their children, too. I couldn't get enough of kids..I don't know why, but I made sure every one that I came in contact with, or befriended, knew they were loved. It still carries on today, as I'm 43 years old, and I'm the one you HATE at the store, who will stop you to talk to your baby. It's a weakness, and our kids will even say "DON'T say hi to the baby!" They know..LOL. 

I found out that I was pregnant at the age of 22, and I can't begin to tell you how exciting that was. A boy. I can't wait to dress him up and play with him and he'll call me "Mommy" and oh wow..the excitement. Then like a record playing backwards, "REEEEK"....

Nobody told me about the dirty diapers, and the CIRCUMCISION and the crying non-stop all night, and the WHAT? he has COLIC? What the hell is THAT? My baby has gas? Oh ok..that's hereditary. 

When you have 6 kids, it's not easy..by any stretch of the imagination..it's a daily chore of getting up 5 times a night, not because they're newborns, but because they try to sneak down the stairs, and get a late night snack.  Ooops..did I just slam that cabinet and wake you up? You're trying to SLEEP? What do you need that for? (still kills me when the kids question me when I take a nap..lol) 

It is easy, because they're all close, they have a good relationship with us, and they're all genuinely good kids. 

Its not easy because you mothers of 1 or 2..you see that box of corn dogs that you just bought for your family that consists of you and your significant other and your 2 darlings that will last all week?? Yeah, I just bought 2 of them, and with 3 teenagers in the house, I'll be lucky if they last an hour in my house. That box of cereal? Yeah, one morning, here. I go grocery shopping, and they see me a mile away. Whether its at Walmart, or our friendly local grocery store, Food Lion. And oh..thank you Food Lion for the race car shopping carts..they TOTALLY rock.  

I buy the groceries and Lulu, our youngest, always wants to go with me..so I rarely shop alone. I can honestly say though, that when Connor (14) Casey, (13) Haileigh, (17) and Brennon, (21) were all little, it was so hard to do anything. I can look back on when they were all little, and say "HOW DID I SURVIVE? HOW did THEY survive?" because, now picture this..I had an 8 year old, a 4 year old, a 2 year old, and a 1 year old, all at the same time. THAT is the Mom I feel for.. and I met one at Walmart a few years back.  She had 6 all under the age of 8, and was pregnant with number 7.  OMG shoot me now.  I couldn't imagine that..but as a Mom, (one that genuinely wants kids) I can say that you manage. You buy the dog bag size of cereal at the store..the one that you look at and think "WHO in the hell eats that much cereal??" . Yeah, my kids do. That giant bag of shredded cheese? Yeah, I buy it. $15 and it lasts 2 days..tops.  That HUGE bottle of syrup? Yep, my kids use it. 5 gallons of milk in 3 days? Yep, my kids. And I'm laughing but that ginormous bottle of laundry soap? Yeah..lasts a week in my house if I'm lucky and the kids keep clean clothes longer, and nobody is sick.  

That's another thing..when they're all sick. Anybody who knows me or is on my facebook, knows that when they are sick at the same time, it's a chore.  4 in school, (Brennon graduated in 2012, thank the LORD) so you're always going to come in contact with some type of virus or bug. I don't care if they have your kids lathered in a hand sanitized bath. Kids are still going to be kids, and spread the germs, and the love. They pick boogers, (boys more because they have cooties...lol)and I love that at the beginning of the school, they ask for tissues and 500 bottles of hand sanitizer. Like it will change how kids are about their personal hygiene. That, and the parents who send their kids to school, sick. I love them. LOL. (Insert sarcastic laugh here) . 

My kids are my life though, and I wouldn't change it for the world. I love being stopped at the store, though, and being asked "Are they all YOURS?" ..I have had a bad day, right before I ran into that person, and said , "No! I found them on street corners!" I got a snood laugh and a snicker..LOL. Or my all time favorite is "You'd think you'd figured out what caused that??????????!!!!!!" I always answer, without hesitation, "Yeah, we did and you know what? We had so much fun doing it that we had more!".. DUH. Don't ask a parent of multiples if they know what caused that. Really? I don't lick the windows..so don't ask. ;-) 

I am the "surrogate" mother to the kid's friends, and to the neighborhood kids, and to kids that I babysit. I can't get enough. It's stressful...yes. I have many moments with my own, where I (God forbid) yell out in anger, that I'm going to run away.  I will never run away, but its out of total frustration.  Clean your toys? Ok. Clean your dishes? Ok. Clean  your clothes? Ok. Remind you to do your homework and you're in middle school?? No way.  I'm overloaded on the "event calendar".  If you're in need of a reminder alarm clock, then set the alarm on the $300 phone we bought you for Christmas.  ;-) 

Yes, 6 kids is a chore, and its hard sometimes, but its such a good feeling to sit down and watch a movie together. Or go outside together.  And just imagine the amount of GRANDKIDS we'll have! I can't wait!!!!!!!!!!!!!!! To be continued... LOL.