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| Rebecca's Whims - Original Watercolor |
All this help, along with getting out of the house to run or walk, and running her craft shop helps keep her sane. For all of us in her family, please help keep her sane by keeping her busy making items in the shop (trust me, I've seen her when she's not sane, for all of us, take a moment and see if you can find something you like :)
Links to check out:
Now, here are some links. This is a pretty long post, so at the very least please check out the sites below and share. I don't want to forget them and I'll include them in the body of the text as well:
Information on Cerebral Palsy
Cerebral Palsy Facebook page
Fundraising shop for Henry
Henry's Facebook page
Reb's Blog
A Sisters Hope Foundation (my nieces organization)
Gotta start somewhere
Hopefully this posting comes out coherent, as I've struggled two write it for a few months. It should be of note that I've been wanting to write about Henry since my 100th consecutive day running but for various reasons have not been able to pull it together. Massive amounts of work over the holidays, then suddenly not having a job, along with the intense emotion of writing about a subject that, any way you look at it, is difficult to handle. I've struggled on what perspective to write it from, how much of my feelings I wanted to share with the world, and how my sister and family would feel about what I was writing. It was very clear that I could not write from the perspective of my sister Reb (Henry's mom), Noah (Henry's father and Reb's boyfriend), or Henry's older brother and sister (Henry does have a little brother, Lewis, still to young to understand why Henry is how he is). In the end, what you get is below, my perspective and feelings on Henry and his situation.
When I started running last spring/summer, it was simply to get exercise. My weight was slowly creeping up, I was not feeling great about my fitness level, and I really needed to break up my work day. Basketball wasn't working because it really hurt my left knee so I started running.
The more I ran, the more I thought about how lucky I was that I could do it, it's no small thing to get out and continually drop your left foot then right food down on the path, sidewalk, road, etc. I have friends that can't do it at all because of previous injuries, as well as being extremely busy between work, family and other obligations. Being able to go out and run every day makes me a very lucky person.
This is one reason I run, because I can. My nephew Henry can't, and from what I understand about the severity of his Cerebral Palsy, he's not likely to ever walk, let alone run.
If you can do it, you should
How lucky am I? Over the course of my years, I have:
Played basketball
Water skied
Snowboarded
Hiked
Bowled
Played volleyball
Played football
Played softball
Kayaked
Played darts
Played pool
Played shuffleboard
Jumped off a bridge
Jumped off a cliff (ok, not THAT high of a cliff, but still..)
Played the game 'Corn hole' (this will crack me up forever, but it's a legit game, read about it here)
Thrown a frisbee
So on and so forth.
Of course, most recently, I've run up and down the west coast like crazy.
These are things we tend to take for granted, and I have most of my life. This doesn't include things that are not even sports related. Going to a movie, shopping, sitting at the pub enjoying friends and some beers, camping, the list can go on and on.
It's in the hundreds!
For a moment, let me stray from how lucky I am to be able to run, to what I recently accomplished. As of June 10th, 2012, I have completed 200 consecutive days running. I started with a Thanksgiving Turkey Stuffer 5k and I decided at that time to join up with the Runners World 'runstreak'. Run every day, at least one mile from Thanksgiving until New Years Day (the main idea, burn off some of those holiday calories).
Once I reached New Years, it didn't really make sense to stop, I was enjoying the running and had successfully navigated running in multiple cities while traveling and multiple weather conditions. I was also able to avoid injury, something I wasn't sure was possible when I started.
I get a tremendous amount of personal satisfaction from running but have often thought I could be doing so much more with it. I do have personal goals for the run streak and beyond, but this posting is about trying to use it as a platform to bring awareness to a cause. If you want to read more about my running, goals and accomplishments, feel free to do so here.
About Henry and Cerebral Palsy
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| Newborn Henry, minus most of the scary connectors. |
Some general facts:
Caused by abnormalities in the brain, can develop in the womb or within the first 2 years of a childs life.
Can also be caused by injury, bleeding or infection in the brain.
Symptoms can be (depending on severity): tight muscles or joints, weak muscles, abnormal movements, loss of coordination, pain, seizures, speech/hearing/vision problems, problems swallowing food or drinks, increased drooling, and slow growth.
Many other symptoms exist and can affect an afflicted individual. The aforementioned are not a comprehensive list, but a summary.
Detection can be done with various tests and may require a combination or all tests, beginning with a full neurological exam. It also may require a CT scan, EEG, or blood/hearing/vision tests.
Treatment also varies and can go from simple to intensive and complex.
Cost:
It takes $15,000 to buy one adult power wheelchair.
As much as $10,000 is needed to buy an augmentative communication device, which allows non-verbal people to communicate.
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| Henry, loving his new stuffed fox. |
And as much as $1000 provide a childcare scholarship for one month.
$500 will pay for one month of Early Intervention services (including therapy) for a baby age birth – 3 years old or one adapted classroom chair.
As little as $250 will pay for 2 hours of therapy for children or adults or 2 weeks of childcare.
Just $100 will buy adapted toys for children with disabilities – so that all children can play!
It was hard
From my perspective, while I don't want to relive those first days and weeks of Henry's life, it's fair for me to share how I felt during those times. In my life, I've had various weird little quirky fears, some that loom large and legit, some that are more trivial. You could add all of those up and it wouldn't come close to how I feared for Henry when he was born. A very large percentage of babies are born with no problems, save maybe problems breathing, irregular heartbeat, or being premature. From what I can remember, I was born pretty normally, though my memories are pretty fuzzy around that time. What you don't expect is for the doctors to take your baby away immediately and prevent you from seeing him.
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| Reb's blog |
One of the aforementioned 'little quirky fears' I've had, I'd say more of an extreme discomfort than a fear (is that different?) is with hospitals. For some reason I've always leaned towards a 'glass half empty' perspective when it comes to hospitals. I see sick and dying, not lives being saved. I don't know why since I've never spent much time in one, maybe I watched too many shows like ER. At any rate, I spent about a week going in and out of the hospital where I was already not comfortable, but then also feeling at any moment I was going to lose my nephew.
It was terrifying and the only way I could deal with it was because I knew Reb and Noah were in a far worse place than I was and I needed to be able to help them, which I couldn't do if I was shut down emotionally. Imagine your baby being born and then being immediately taken away. No first snuggle, no happy moments with the family sharing, taking pictures, getting balloons and flowers, all of the things that come along with a new baby.
We were all terrified, no one knew how to react or be positive. The doctors were also either unable or unwilling to share information about Henry's condition. He was continually having seizures, constantly being taken and hooked up to machines for testing, having his poor body poked and prodded, electronics being taped or attached to him. I've never been more terrified in my life than those days.
Moving Forward
Now that time has passed between those first horrible days through to today, it's a little easier to deal with. Henry will still require care his entire life, our family will always need to be together in supporting Henry, and for at least the next 100 days of my run streak, I'll be sharing information about Henry, updates etc, and sharing information about Cerebral Palsy.
I guess what I want to do for (at least) the next 100 days running is bring people into Henry's life. My sister provides a voice for Henry and talks about his highs, his lows and everything in between. She and Henry's father, Noah spend much of their day caring for Henry, but there is so much more to their story. I encourage you to give it a read here. At the same time, I'd like to bring awareness to CP and hopefully bring some visibility to my sister's hand made craft shop online. Every time someone purchases from the shop, it gives her more bandwidth financially to make a better life for Henry, as well as the rest of the family.
It does not escape me that, even in my current situation, I'm a very lucky person. I have great family, great friends, all of which support me in various ways. I have an open schedule to do what I want, when I want. I have the physical ability to work with very few limitations. Now, if I had some celebrity (In my world, more than 700 blog views makes me a celebrity in MY world ;) I would leverage that to help others, including my nephew Henry, who needs all the help he can get, so I'm starting here.
Please take a moment to read and share if you will. At the very least, share some of the links above. Henry has a great personality, is very much loved by all of his family and friends. Thank you so much for reading.
Information on Cerebral Palsy
Cerebral Palsy Facebook page
Fundraising shop for Henry
Henry's Facebook page
Reb's Blog
My niece also started a foundation, you can check out her page below:
A Sisters Hope Foundation
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| Ash Foundation |
