This is Brendon. Before Brendon was born he suffered a STROKE. It is important for us to share his story so we can raise awareness that CHILDREN can suffer a STROKE. Please share Brendon's story to help in our mission. Brendon's Smile...Raising Awareness for Childhood Stroke Foundation was created to raise awareness and educate EVERYONE about stroke in children. For more information visit www.BrendonsSmile.org.
Brendon was born a SURVIVOR and we are so blessed to have him in our lives.
At 19 months of age Brendon was diagnosed as having suffered a stroke while in utero. As a result of the stroke he has been diagnosed with Cerebral Palsy, Right Hemiparesis, Muscular Scoliosis, Speech Apraxia and Aphasia. Brendon currently wears braces on both feet and a splint on his right hand. Brendon is two years old and is only able to say a few words. He struggles with his inablility to vocalize and gets very frustrated with himself. He tries with everything he has to tell the people he loves what he is thinking. Brendon has a gorgeous smile and spirit that you can see by looking into his eyes. Through all of his frustration he manages to keep on smiling. Ask any one who knows him...he lights up a room. His spirit keeps us going!
It's important for every parent to know that doctors may not recognize the symptoms of stroke in children. Brendon should have been diagnosed much earlier than when he was. As a new mother I was told I was overly "paranoid." Due to lack of a diagnosis by several doctors and specialists Brendon was deinied the treatment he so much deserves.
You are invited to share Brendon's journey with us.
It is my goal to share with you every step of Brendon's journey so you understand what it is like to advocate for a child you love and to raise awareness. I don't want another child to be denied what is their's!
Saturday comes rolling around (after such a wonderful day we had, just the two of us) and Brendon was scheduled for this 4th and final MRI of the Constraint Induced Movement Therapy research study he has been participating in. Seriously, what 9-year-old kid wants to take about 3 hours out of his summertime Saturday to go to a clinical setting, do some motor testing and then sit still in a very dark cold loud tube for an hour or so, all in the name of helping others. He does...well sort of kind of. However, his anxiety about that big loud tube has been building with each trip to have another one. He didn't fill me in on how much it upset him until we were leaving to go. Ironically, last week I shared an article about anxiety and therapy treatment on Facebook. Anxiety is not something at all foreign to Brendon. Having been adopted, anxiety is NOT foreign to me. Yet my anxiety, as I recall, stems from being separated from the people I love, today it is my kids. When I was a kid it was my mom. Brendon's anxiety is more over things like weather or illness someone he loves has or something in the news that he caught wind of or going into a huge MRI machine. In all fairness when I had my first MRI, at the age of 19 for migraines, I was rather anxious - all I could think about was being in a coffin.
Once we arrived, Brendon did the standard motor testing and then it was time to go into the tube. I went into the room with him and helped settle him in. Dr. Nico and Catherine, an OT who is helping with the research study, are so easy going. Brendon didn't want the red laser light to line it up on his head. He was worried that something in the machine would shoot lasers at him and harm him. I reassured him that I would never subject him to anything that would harm him or put him in danger. Dr. Nico and Catherine said they wouldn't line his head up using the laser and it was no problem. He got to pick out a movie he could watch for part of the time in the machine. I helped get comfortable and told him that I would be in the room with the microphone to talk to him if he wanted. He said he didn't want anyone to stay in the room with him and he could handle it. I ran to use the restroom quickly. When I returned I discovered him out of the machine and crying. He ran to me and we hugged. He told me it was really scaring him. I asked him if I could go in with him this time and I could be right near him. He has a "helmet" with a mirror at the top of the machine where he can watch the movie projector. He wanted me with him. Together we marched right back in and got settled, the both of us. I went to the top of the machine where I could see his eyes. While the scan was in progress I kept jumping by the tube opening and making crazy faces and waving like a crazy mad woman. I could catch a little bit of a smile. We could even chat by yelling at each other through all of the ruckus and in between scans. (Those machines are terribly LOUD!)
When it was over, we got him out and he about tackled me! I told him how proud I was of him for being so incredibly brave. He told me it was because of me (but it wasn't, I know he would have done it without me). I was so happy that we could be a team!
Brendon could have said, "No way!" and could have walked right out. He didn't! I am teary-eyed thinking about how brave he was for other people!
Yesterday he had a bit of a "9-year-old moment" of teasing his little sister in the pool while we were swimming. I expect those "typical" moments. ;)
Today we packed up the car, per his request, and took his bike over to a trail that runs along the Mississippi River. This is the first time he road on a trail. It was a scorching HOT day (heat index over a 100) but I made sure he wore a white shirt, lots of sunscreen and took ice cold water. I pulled his bike out of the back of the car when we arrived and he was off, soaring like a free bird threw the parking lot (no one was there except my niece with her children). After all who goes out in this type of heat except a couple of moms doing their best to get their kids out of the house on summer break! Brendon road up and down the trail like a champ for over an hour. He was so happy! I would classify him ready to be a trail rider. For the past several weeks he keeps telling everyone that he is going to be in the Tour de France someday. I don't doubt it. This was the first time he got to pedal for miles nonstop. He has been passionate in the past about certain things but last year he worked so hard to ride his bike. He was terribly embarrassed by the fact he was turning 9 and couldn't ride. His right-sided weakness was preventing him from doing something he wanted to do so badly. With some wonderful advice from his PT and a balance bike he was completely independent within 4 days on a regular bike. Here we are a year later he is flying up and down a trail along the river. I will treasure the memory of the smile he wore the entire time he was out in that heat.
As we were heading back to the parking lot there was some whining from a few tired hot kiddos, but not from Brendon. He helped the littler kiddos get their bike up the hill. Then this evening he had an hour gymnastics class and seemed to be back in mode with it. Even after riding this afternoon.
When returned home he made dinner for the family. (I assisted just by showing him the steps and how to evenly distribute the ingredients.) He asked to prep a "healthy" pizza and we barbequed it so we didn't have to heat up our house even more.
Yes, I am a proud doting mother. I just can't help it. He has such a kind heart, an old soul and is so inspirational to me! I even treasure the "typical" big brother moments because he is with us.