Chris was born with a congenital brain malformation. Basically all the wires didn't come together properly and consequently, he has some special needs. His primary issues are with speech and fine motor skills. He has a handheld computer that he uses to augment his communication, and his school work is done mostly on a laptop loaded with all kinds of great software. All of these issues are actually very insignificant compared to the battle he has had to fight with seizures since he was 10 years old.
Chris is my inspiration because despite all of these challenges he faces, and will continue to face - he is the happiest, loving, funny and determined individual I have ever known. We are blessed to have him in our lives. I've always told his team of teachers at school that it is important to challenge him just enough without frustrating him, and not to do too much for him - it's a hard balance sometimes, but Chris meets it with pizazz and nothing gets him down. He always always always bounces right back with a smile on his face and enthusiasm for life. And he still takes moments to pat someone else on the back when he knows they are having a hard time with something.
I have learned that there is a lesson here for me...one of many actually, but it terms of how Chris meets his challenges in his daily life, I need to apply that to my life as well. It is so easy for me to say 'I can't do this' when I think about training for a 5K. Am I nuts? I have said I am NOT a runner...this is new, scary territory for me. I have been thinking about doing this for over a YEAR and fear of failing has kept me from taking the leap to just try it and see what happens. Chris faces new challenges every day of his life - and does it with a smile on his face and a joy that can't adequately be described.
I have lost and gained the same weight so many times, I've felt 'why even bother anymore?' - I'm just not going to be able to do it and keep it off. Chris has had so many ups and downs.... hospital stays, uncomfortable tests...never once has he said or implied that he 'just can't do this again'. He does not have a choice! I do!
I know I will have good days and bad while I challenge myself to do something difficult....I may get injured, I may have a slump, I may say "I don't think I can do this'. As soon as those thoughts appear...I'm going to get back up and keep going. That's what Chris does every day...I hope I can do it as gracefully as he does!
4 comments:
That's a great story, and an inspiration for everybody!
I really liked your comment, "I've always told his team of teachers at school that it is important to challenge him just enough without frustrating him, and not to do too much for him - it's a hard balance sometimes..."
That's true for all of us. We all benefit from being challenged to do our best, without being made to feel inadequate when we fall short.
Thanks so much for sharing!
Cyndi: What an amazing post! I am teary...not because I feel sorry, but because I have such an admiration for you and am also inspired by Chris. Makes my excuses seem pretty lame ;-)
Have any of his doctors provided hope/solutions for his seizures? Coincidentally, one of my clients specializes in diagnosing and treating complicated seizure cases. His Web site is www.floridaneuroscience.com. I know that he sends surgery and brain mapping cases to Cleveland Clinic Ohio. If I can help you in any way, please let me know.
Hi Chris, Thanks for the kind thoughts! Chris currently takes two medications, and his neurologist is at the Cleveland Clinic. I will definitely be checking out the site you listed - thanks so much! I'm always reading and researching and keeping up with the latest!
Chris takes two meds right now and one of them is new so it's too soon to tell if he's got the right concoction yet. (he's been hit with two illnesses in the last month!) Surgery is not an option right now because of the overall state of his brain, but who knows what the future will bring with research and trials.
Thank you again!
Cyndi: I am sure that you are well versed in all the possibilities by now. One of the treatments that is helping patients here who cannot undergo surgery is an implant called Neuropace (www.neuropace.com). There may be others out there; they seem to be like pacemakers for the brain. I don't know what the exact parameters are for being able to get it, but let me know if I can help you with more info, etc. Another treatment that I have been learning from patients is a ketogenic diet, which is like Atkins with a few tweaks. Like you said, there will hopefully be advancements over the next few years which will help end his seizures!
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