The Sussy Project
A Son Like Griffin
August 13, 2013 in Uncategorized by Meggie
When I first read Griffin’s story, I thought about my unborn son (he’ll be arriving in a few short weeks). If my son turns out like Griffin, I safely can say I’ve done something right. He has amazing courage, an encouraging spirit, and a gigantic heart. But don’t just take my word for it – here is what Griffin’s mom (Sandy) told us about Griffin:
“Griffin has always been intelligent as a child. He earned his Arrow of Light in Cub Scouts. I was the Cub Master and every week he would help me prepare the Monday lessons for the entire pack. He won an Art Award which was displayed at the local Kirby Theater Gallery & earned The Young Eagle Award for co-piloting a sports plane. He is a member of The Young Eagles & wants to become a sports plane pilot (although the medical profession is still researching the effects of air pressure potentially causing the spreading of CRPS). He is an avid animal lover & wishes to be a Geologist or Archaeologist when he completes college. He used to meet with his friends every Saturday and was the Website Designer for their cartoon creations. He was usually one of the top fundraiser participants for his school and enjoyed helping me serve food at the soup kitchen on his days off.
He was born 2 months premature. However, even then he was the largest baby in the neonatal clinic. He was hardly ever sick growing up, never complained even when he broke his arm at Disney and his ankle at his father’s house. He initially stopped walking at age 4 when he broke his ankle and although the fracture appeared to have healed, it took about 6 months on a walker to get him back walking without support. No one knows what causes CRPS. It may be hereditary, could be caused by stress in the person’s life at the time of the injury or it could be a result of immobilization after a surgery.
Before his CRPS injury, most days were spent carefree, playing & walking the dogs & he loved to travel! On his 10th birthday, he got a silver mustang convertible & enjoyed riding home from school with the top down or, taking his dogs for a ride (while mom drove). When in Texas, during our western adventure trip, instead of buying souvenirs, like most kids, he bought 5 acres of land to explore. He kept a daily journal & this was an invaluable resource to return to for medical purposes. From his daily journal he wrote, “August 23, 2011 My goals for the year are to get good grades, try to finish homework & classwork the best that I can. Eat healthier, play with my dogs more, do my chores more often, try to charge my computer more often, watch less TV, play less video games, get outside more, exercise more, try not to be stressed all the time like last year & the 2 years before, clean my room more, start walking my dogs, get more sleep, pet my dogs more, visit my cousins more, go swimming more, ride on the boat more, hang out with my friends more at Youth For Christ, spend more time with my family, try to get my dog Benson to stop biting & barking at Sparky, vacuum my room, wash the car, try to focus more, lift weights, get to school earlier, try to stay after school for tutoring, volunteer more to help the teachers, my school, the environment & my community, be more involved in my church at Concord United Methodist where most of my favorite teachers go, make home-made apple juice & orange juice, practice on my trumpet more.”
He started the website www.crpskidz.com – which is dedicated to helping kids with CRPS by a commitment to share his adventure with CRPS. “I hope to make others more aware of the pain associated with this disease and to be a source for other kids.” and his WordPress blog is also available to keep kids informed. His summer project is converting non-profit educational material for kids into You Tube format and you can find his videos under “projects” on his blog at http://crpskidz.wordpress.com/
Griffin has a huge heart and is very non-materialistic. I am a single mom and he never complains unless it is something he feels he can’t overcome by himself. He participated in Boston Children’s PPRC clinic which got him back on his feet again and out of his wheelchair. However, is standing is limited due to POTS, Patella Femoral Syndrome, bone bruising and meniscus damage. He is hoping for a cure so that he can have cadaver knee surgery with cartilage built in. CRPS is affecting his internal organs and he suffers from hiatal hernia, hypersensitivity to everything, ingrown toenails, skin mottling, bursting veins, sleep paralysis, and uncontrollable itching. Since his disease, he has grown from 5’9″ to 6’5″ and a size 15-1/2″ shoe! We’re having a tough time just keeping him dressed. Griffin’s CRPS Awareness video is located at http://tinyurl.com/crpsyoutube and his Facebook link is www.facebook.com/CRPSKidz.”
When I emailed Sandy to let her know that we were going to sussy Griffin, she was ecstatic. And Griffin’s sincere email melted my heart.
Here is what he said:
“When I got CRPS, I was always the kid at the PPRC in Boston’s Children’s Hospital that slept too much but now I am like the other kids and don’t sleep at night much. That’s when I hurt the most. The other bad part is having no cartilage in my knee and Patella Femoral Syndrome. I’ve had the spine shots and therapies to walk again even without the knee fixed. I have POTS so my heart races too fast when I do my exercises. I know God doesn’t give me more than I can handle so I must be pretty tough.
The best thing they taught us in Boston is to keep your mind distracted and my best distraction is playing XBox and chatting with my friends. I don’t like to leave the house and I home school because I got bumped too much in the hallways at school and XBox lets me be able to play and talk to my friends.
I was surprised when I opened your email! My friend had just come over to spend the night and I had a smile on my face and I know you didn’t have to do this. You are amazing to do what you do to make strangers happy. The Microsoft Gift Points was a cool gift and when I can, I will be sure to pay it forward and tell everyone about the Sussy Project.”
I also followed up with Sandy to let her know about her son’s gift and told her that I hope my son has the heart and courage like Griffin. Her response brought tears to my eyes:
“Best of luck to you and thank you so much for making my son smile. In the past, he used to save all of his allowance, would never treat himself – just in case someone needed help. We weren’t expecting that it would be him that would need the help. But, he has a big heart and I love him tremendously. We’ve learned that we only need the basics in life and that God provides for us daily. We have each other and that is our blessing. Thanks for all you do!”
As you go about your day, I want to leave you with this quote to inspire your actions and thoughts today (and everyday):
“Be kinder than necessary because everyone you meet is fighting some kind of battle.” – J.M. Barrie
To understand more about CRPS, please check out Griffin’s site.
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