"Hey guys, guys, stop yelling at each other. Don't you just wanna have fun? Come on, le'ts play and have some fun, it's camp!"
Ben is that ONE in 6,000 (some experts say 10,000) infants to be born with SMA (Spinal Muscular Atrophy). He can only move his right arm and head "freely", and even this has major limitations. If his head falls off the neck support on his motorized wheelchair, he can't pick it back up and put it into place on his own. He cannot sit up unsupported or on his own. He needs to be fed through a G-Tube in order to ensure his stomach directly receives all the nutrients he requires. This tummy "B-Line" is also a direct route for water... 60mL every hour, so his bowels receive enough to function properly. He can be in constant pain and not tell you, because he doesn't want to be a burden. If he somehow becomes infected with a respiratory infection, he will inevitably get pneumonia and be at risk of death (because his muscles in this area are so weak, he would not be able to fight off the infection). Ben has already outlived his life expectancy.
What is SMA? Well, as mentioned, it affects only one infant in every 6,000-10,000. Spinal Muscular Atrophy is a disorder that affects the control of muscle movement. It is caused by a loss of motor neurons in the spinal cord and the brain stem. The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement. In severe cases of SMA, the muscles used for breathing and swallowing are affected. There are four types of SMA, and Ben has the fourth on the list: Distal Spinal Muscular Atrophy Type 1. This form of the disorder is characterized by progressive muscle weakness in the hands and feet, soon spreading to the limbs. Individuals with this type of SMA usually develop paralysis of the muscles which separate the abdomen from the chest cavity, which later leads to respiratory failure. Symptoms for this type of SMA begin to show between the ages of 6 weeks and 6 months. It is terminal.
Not that ANY of this stops Ben! To be quite sure, NONE of it stops Ben from living a life that is as fulfilling as yours or mine. Ben is not a regular kid, and this isn't just because of the physical challenges he lives with. Ben is BY FAR, the most enthusiastic, encouraging, respectful, brilliant six-and-a-half year old I have ever encountered. I have encountered a butt-load of six-and-a-half-year olds, too.
I met Ben and his dad early Monday morning under the main pavilion at camp. Dad took me to under the trees next to the canoe's to give me the "Ben Tutorial". In about 20 minutes, I had to quickly! learn how to lift him without causing any pain, feed him and administer his water through his G-Tube in his tummy (the "B-Line of Nutrition"),and how to use the "Pee Catcher" (which was essentially a jug into which Ben would relieve his self, but was actually a bit tricky to use. You had to slouch Ben down in his chair quite a bit so you could, in fact, catch his excretions, but in this process he could experience tremendous pain from the way his body bended or got shoved). It was a whirl wind of instruction, which I was not at all taking lightly.
The great thing about Ben was that he was not afraid to tell you if you were doing something wrong! Which he did a lot of with me this week.
Ben LOVES making friends and doing anything and everything with them. He never sits on the sidelines, but rather is right in the middle of the action. Even if his chair doesn't fit somewhere, climb something, or gets stuck... He'll find a way to make things work! This week, he made especially great friends with another camper in his group named Spencer. As soon as Ben would arrive and we got all situated, he would ask me to go out on the field to find Spencer so that they could talk about what they did after camp the previous day. As you can imagine, because of Ben's condition, he would have to tote along a variety of extra "baggage" everywhere we went. Among this baggage was his two back packs, his "Tomato Chair" (which is a soft and spongy chair you can put anywhere so that Ben could get out of his wheelchair and sit on the ground/in the canoe/at a table with his friends), the pee catcher, among other things. This was a bit much for me to carry on my own, and so I got out the red wagon we had in the supply shed to put everything in and pull around with us (too many trips back and forth the pavilion is no good). Spencer immediately wanted to be a part of this. He volunteered to pull the wagon wherever we went, and didn't complain about how heavy it was once. He also volunteered to push Ben several times when Ben was in his manual chair (for certain games and one loooooong hike). On Thursday, Ben and Spencer collaborated on the beach during swim time to create a "water drainage system" from the section of the beach where Ben was sitting in his Tomato Chair all the way to the water. Ben directed Spencer to dig here, dig deeper there, and had the awesome idea to make a waterfall. Eventually there were diversions off the main system route, and as Spencer ran back and forth to get buckets of water to pour on the waterfall and down the chute, Ben hooted and hollered in praise. It was such a beautiful thing, and I luckily have a picture to remember it by.
Ben is quite the dare devil! All week I called him "Evil Kanevil Jr. Jr.", because he would put his chair speed up as far as it could go, shoot off in a flash and just do circles around the main field! He'd chase seagulls or try to just do funny tricks. Sometimes he'd be going so fast and hit a divit in the ground, only to be left flopped over to one side of his chair stuck and unable to pull himself up (Christine to the rescue!!). We'd have a short talk about how much that freaks my freak and that unless he wants me to have a heart attack he should make a better choice ;). Then he'd shoot off again and have a fake flopping over. I'd run over, not knowing of his "trick", only to find his tongue hanging out and his eyes to one side, haha. When I made mention of calling the ambulance, he's quickly open his eyes as wide as can be and say "GOT YA!". This kid was brilliant.
Brilliant indeed. His positivity never once lagged throughout the week. When playing Elephant Ball (this is basically soccer but you have to hit the ball with just one arm as if it was an elephant trunk), and the boys began their banter about who was hogging the ball or why that goal should have counted, Ben stepped in and reminded them that "it doesn't mater who wins or loses, just have fun, this is camp!". During washroom times, he would even encourage me.... As mentioned earlier, toileting Ben can be pretty tricky... It becomes necessary to put him in awkward positions that may cause him tremendous pain. When it came time to pull everything back up and get ourselves out and to the group, I would always call an extra helper in to assist me with this. I would hold Ben up as someone else swooped his pants and underpants back into place. But on Wednesday, he had much faith in me. "Christine, you can do this. You can get my pants up all by yourself. I know you can do it, just try". So I did, and I succeeded. Just once though, haha. Thursday rolled around and it seemed that I wasn't doing the greatest job to keep Ben comfortable and, by the second time he needed to pee, he would ask me to make sure someone was on standby, haha.
I learned so much from Ben this week. In particular that I am very grateful for an able body and full control over it. I am grateful that I got to meet him and know him personally. I am grateful that he has had such an influence on my week, summer, and life. He truly is a Super Kid, and he's going to make such an enormous difference in the lives of everyone he meets.
Next Week: "No Tan Koo!"... LUIGI!
Kudos' of the Week:
1. To Luigi and Devon for doing their first every sleep out and not wanting to go home (after a while, haha)!
2. To Jackie for being a great substitute for Kylie and awesome counsellor with Zechariah
3. To all the counsellors working with the Hewitt's this week
4. To Kim (and me) for sleeping on a hard ground for the sleep out! Yay for the Princess Tent :)
5. To Jon for also surviving the sleep out, and taking those scratches and punches like a champ
6. To Vanessa for doing a stellar job with Nicholas
7. To Lindsay who had one CRAZY BUSY week of breaks!
8. To the person who invented mint chocolate chip ice cream
9. To Katherine who had better success with the washroom with her camper this week that I did last week
10. To everyone who had their last day yesterday (Danny, Farrah, Jon, John). It's been a pleasure working with you all. Stay in touch so I don't have to Facebook creep you to know what you're up to.
What is SMA? Well, as mentioned, it affects only one infant in every 6,000-10,000. Spinal Muscular Atrophy is a disorder that affects the control of muscle movement. It is caused by a loss of motor neurons in the spinal cord and the brain stem. The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement. In severe cases of SMA, the muscles used for breathing and swallowing are affected. There are four types of SMA, and Ben has the fourth on the list: Distal Spinal Muscular Atrophy Type 1. This form of the disorder is characterized by progressive muscle weakness in the hands and feet, soon spreading to the limbs. Individuals with this type of SMA usually develop paralysis of the muscles which separate the abdomen from the chest cavity, which later leads to respiratory failure. Symptoms for this type of SMA begin to show between the ages of 6 weeks and 6 months. It is terminal.
Not that ANY of this stops Ben! To be quite sure, NONE of it stops Ben from living a life that is as fulfilling as yours or mine. Ben is not a regular kid, and this isn't just because of the physical challenges he lives with. Ben is BY FAR, the most enthusiastic, encouraging, respectful, brilliant six-and-a-half year old I have ever encountered. I have encountered a butt-load of six-and-a-half-year olds, too.
I met Ben and his dad early Monday morning under the main pavilion at camp. Dad took me to under the trees next to the canoe's to give me the "Ben Tutorial". In about 20 minutes, I had to quickly! learn how to lift him without causing any pain, feed him and administer his water through his G-Tube in his tummy (the "B-Line of Nutrition"),and how to use the "Pee Catcher" (which was essentially a jug into which Ben would relieve his self, but was actually a bit tricky to use. You had to slouch Ben down in his chair quite a bit so you could, in fact, catch his excretions, but in this process he could experience tremendous pain from the way his body bended or got shoved). It was a whirl wind of instruction, which I was not at all taking lightly.
The great thing about Ben was that he was not afraid to tell you if you were doing something wrong! Which he did a lot of with me this week.
Ben LOVES making friends and doing anything and everything with them. He never sits on the sidelines, but rather is right in the middle of the action. Even if his chair doesn't fit somewhere, climb something, or gets stuck... He'll find a way to make things work! This week, he made especially great friends with another camper in his group named Spencer. As soon as Ben would arrive and we got all situated, he would ask me to go out on the field to find Spencer so that they could talk about what they did after camp the previous day. As you can imagine, because of Ben's condition, he would have to tote along a variety of extra "baggage" everywhere we went. Among this baggage was his two back packs, his "Tomato Chair" (which is a soft and spongy chair you can put anywhere so that Ben could get out of his wheelchair and sit on the ground/in the canoe/at a table with his friends), the pee catcher, among other things. This was a bit much for me to carry on my own, and so I got out the red wagon we had in the supply shed to put everything in and pull around with us (too many trips back and forth the pavilion is no good). Spencer immediately wanted to be a part of this. He volunteered to pull the wagon wherever we went, and didn't complain about how heavy it was once. He also volunteered to push Ben several times when Ben was in his manual chair (for certain games and one loooooong hike). On Thursday, Ben and Spencer collaborated on the beach during swim time to create a "water drainage system" from the section of the beach where Ben was sitting in his Tomato Chair all the way to the water. Ben directed Spencer to dig here, dig deeper there, and had the awesome idea to make a waterfall. Eventually there were diversions off the main system route, and as Spencer ran back and forth to get buckets of water to pour on the waterfall and down the chute, Ben hooted and hollered in praise. It was such a beautiful thing, and I luckily have a picture to remember it by.
Ben is quite the dare devil! All week I called him "Evil Kanevil Jr. Jr.", because he would put his chair speed up as far as it could go, shoot off in a flash and just do circles around the main field! He'd chase seagulls or try to just do funny tricks. Sometimes he'd be going so fast and hit a divit in the ground, only to be left flopped over to one side of his chair stuck and unable to pull himself up (Christine to the rescue!!). We'd have a short talk about how much that freaks my freak and that unless he wants me to have a heart attack he should make a better choice ;). Then he'd shoot off again and have a fake flopping over. I'd run over, not knowing of his "trick", only to find his tongue hanging out and his eyes to one side, haha. When I made mention of calling the ambulance, he's quickly open his eyes as wide as can be and say "GOT YA!". This kid was brilliant.
Brilliant indeed. His positivity never once lagged throughout the week. When playing Elephant Ball (this is basically soccer but you have to hit the ball with just one arm as if it was an elephant trunk), and the boys began their banter about who was hogging the ball or why that goal should have counted, Ben stepped in and reminded them that "it doesn't mater who wins or loses, just have fun, this is camp!". During washroom times, he would even encourage me.... As mentioned earlier, toileting Ben can be pretty tricky... It becomes necessary to put him in awkward positions that may cause him tremendous pain. When it came time to pull everything back up and get ourselves out and to the group, I would always call an extra helper in to assist me with this. I would hold Ben up as someone else swooped his pants and underpants back into place. But on Wednesday, he had much faith in me. "Christine, you can do this. You can get my pants up all by yourself. I know you can do it, just try". So I did, and I succeeded. Just once though, haha. Thursday rolled around and it seemed that I wasn't doing the greatest job to keep Ben comfortable and, by the second time he needed to pee, he would ask me to make sure someone was on standby, haha.
I learned so much from Ben this week. In particular that I am very grateful for an able body and full control over it. I am grateful that I got to meet him and know him personally. I am grateful that he has had such an influence on my week, summer, and life. He truly is a Super Kid, and he's going to make such an enormous difference in the lives of everyone he meets.
Next Week: "No Tan Koo!"... LUIGI!
Kudos' of the Week:
1. To Luigi and Devon for doing their first every sleep out and not wanting to go home (after a while, haha)!
2. To Jackie for being a great substitute for Kylie and awesome counsellor with Zechariah
3. To all the counsellors working with the Hewitt's this week
4. To Kim (and me) for sleeping on a hard ground for the sleep out! Yay for the Princess Tent :)
5. To Jon for also surviving the sleep out, and taking those scratches and punches like a champ
6. To Vanessa for doing a stellar job with Nicholas
7. To Lindsay who had one CRAZY BUSY week of breaks!
8. To the person who invented mint chocolate chip ice cream
9. To Katherine who had better success with the washroom with her camper this week that I did last week
10. To everyone who had their last day yesterday (Danny, Farrah, Jon, John). It's been a pleasure working with you all. Stay in touch so I don't have to Facebook creep you to know what you're up to.
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