Chapter 5 - My Week with Hunter
In 2002 my camper at our camp for children with special needs was Hunter. Hunter was 9 years old, but physically he was the size of a four or five year old. His vocabulary consisted of short sentences that were sometimes difficult to understand. Hunter also had an incredible amount of energy and curiosity. He was constantly on the run and into everything.
Hunter and his sister Sydney have a disease called Sanfilippo syndrome. According to BensDream.Org:
"Children afflicted with Sanfilippo Syndrome are missing an essential enzyme that breaks down strings of a complex body sugar called heparan sulfate. The partially broken-down sugar, or mucopolysaccharide, accumulates in the brain and the body’s cells and tissue causing progressive damage. The storage process affects children’s appearances, bodily functions and development. Sanfilippo children tend to look alike and have similar health problems.
A Sanfilippo child appears normal at birth and develops within the range of normal for the first year or two, but as more and more cells become damaged symptoms begin to appear. Eventually, the build-up of muccopolysaccharides will cause hyperactivity, sleep disorders, loss of speech, mental retardation, dementia and finally death. Life expectancy for a child with Sanfilippo Syndrome is between 12 to 20 years.
There is currently no treatment or cure."
Hunter’s sister Sydney also came along to camp. After they arrived their mother went with Sydney and her counselor. Their Father and I took Hunter and his stuff to our room. Hunter was not content to sit as his Dad offered advice on dealing with him. So his Father tried to shout out as much advice as he could as we both chased Hunter around the camp.
After his parents left I let Hunter explore around the camp. He was fascinated with the creek and the fire ring. He was convinced that the creek was full of "ow-ye-gators" and crocodiles.
After an hour of exploring the camp area it was time to walk to lunch. Walk may not be the best way to describe our journey to lunch, Hunter loved to run. About ¾ of the way to the dining hall there is a small man-made frog pond. You could almost always see a few frogs sitting on the rocks or lily pads. Hunter loved the frog pond. He would run up to the frog pond saying "Touch it, touch it" or "Catch one". A few times Hunter did manage to touch a frog that was sitting in the grass or on a rock close to the edge. Before and after every meal we would stop at the frog pond. As the week wore on I became more and more appreciative of the break we took at the frog pond. It provided a little rest before we finished our run to the dining hall.
Once at the dining hall Hunter would head over to a stuffed Bear and Deer displayed in the corner. Depending on his mood Hunter either wanted to hug them, take them home or shoot them. We would then wander through the tables until it was closer to the time to eat. Usually he would sit through the meal but there was an occasional piece of flying silverware and once a "spilled" glass of milk.
As it got closer to bedtime I made the bed up furthest from the door for Hunter and the bed closest to the door for myself. Around 8:15 Hunter said he was going to bed, climbed up the stairs, climbed in my bed and fell asleep. If he was going to sleep I was going to let him sleep where ever he wanted.
I was worried about him getting up at night so I took the mattress off of what was to be his bed and put it on the floor next to the bed he was now sleeping in. I slept there. If Hunter got up I would know. Around 2:00 am I heard Hunter sit up in bed. I sat up and leaned in close so he could see I was there. He kissed me on the cheek, went back to sleep, and slept the rest of the night.
Hunter was very concerned toward all the campers in wheelchairs. Whenever he saw them he would go over to them and hug and kiss them. We would gather everyday as a group for worship. Because of Hunter’s attention span I wouldn’t join the group until the last minute. All the other campers would already be there. The wheelchairs usually gathered together in the widest area. Hunter would move from wheel chair to wheelchair giving each camper a hug.
The second morning Hunter woke up before me (or anyone else). Once Hunter was awake he was awake! So I quickly got dressed, go him dressed and took Hunter to the bathroom to get ready for the day. The bathroom was large with 2 showers and a few sinks. I got Hunter started brushing his teeth. As I was trying to put my contacts in Hunter became bored and headed for the door. He opened the door and was heading for the hallway. I stopped him and moved my stuff to the sink closer to the door. I finished putting my contacts and brushing my teeth with my foot holding the door shut. By 6:15am we were out at the basketball hoop shooting the baskets.
Hunter was funny to watch when he was shooting a basketball. For someone his size he could make a large number of baskets. After he made a basket he would either say "Michael Jordan" or "Good job, Thank-you your welcome".
Sydney, Hunter’s sister, was a big help to me. Often times Sydney would help me understand what Hunter was trying to say. Hunter would often go through periods of high energy where he would run from place to place getting into everything. Right before one of these episodes he would start giggling. Sydney told me that was his "bad laugh".
One day Hunter and I were down by the creek. Hunter was searching around the trees for stones and pinecones. I saw him pick something up and say "Hug it" and move it toward his face to kiss it. I got his hand before it reach his face and saw he was holding a crayfish head. It was just the shell, left over from a Raccoons lunch. I took the shell and threw it into creek. He was very angry at me and wanted me to jump in the creek to go get it back. When I wouldn’t give in he kicked me in shins. I sat Hunter on a nearby chair until he calmed down. After a few minutes he got up, walked over to me, put his hands on my cheeks, said "Sar-wee" and kissed my cheek.
As the week wore on I found the things that would keep Hunter still for a while. Someone that Don knew had donated a whole box of stickers. There were literally thousands of stickers in the box. Every once in a while Hunter would go into the craft room where the stickers were and look through the box. He would carefully look through all of the stickers. Pick three or four and put them on his shirt.
Sometimes when Hunter got angry he would kick or push something. Usually I could anticipate these and prevent any damage. One day we were at the cafeteria. After meals Hunter liked to carry the dirty dishes to the kitchen area to be washed, so I assumed that he may also like carrying the milk over to our table. I got a cup of coffee, picked up the water pitcher and tried to hand Hunter the milk. In the mean time Hunter saw a loaf of bread and decided he wanted a piece. I told him that we couldn’t eat yet. He not only didn’t take the milk but he started kicking the trash can. I was standing there holding coffee, a water pitcher, and a carton of milk. I spilled my coffee trying to put them down, and I still didn’t get to him in time to prevent the can from being kicked over. Luckily it was before the meal started and there was not much in it.
Hunter loved baseball. He was constantly searching for anything to use as a bat and ball. Sometimes he would sit on the ground and pick up a little stick and a small pinecone and hit the pinecone with the stick.
Someone from Don’s church created a miniature golf course for us. They built portable castles and windmills for us to hit the ball through. A local miniature golf course donated some old putters and we used tennis balls for golf balls. Hunter loved the game ! He was pretty good at hitting the ball through the targets, but he would pull back the club and hit the ball really hard. Then he would yell "Home Run" and chase after the ball.
We had some rain on Thursday so as we were walking to the dining hall for our last dinner of the year there were puddles on the road. Hunter managed to find every puddle. Initially I tried to stop him but then I realized that we were at camp and Hunter wouldn’t have been Hunter if he would have walked by the puddles.
Before the beginning of this week I thought that Hunter would be hyper-active, stubborn, and prone to tantrums. I wasn’t wrong. But these are symptoms of his disease not who he is. Hunter is the little boy who loves baseball so much that even a small twig and a tiny pinecone become a bat and ball. He is the little hands on my face and the little voice saying "Sar-wee" after getting angry. Hunter is running to the dining hall and running back, stopping only to chase frogs or hug the kids in wheel chairs. Hunter is jumping in every mud puddle on the way to lunch. On the first night at camp, after chasing him around all day, Hunter woke up in the middle of the night. I immediately thought about the note from his mother on his health form stating that Hunter got home sick and cried for his parents. I went over to let him know someone was there. He leaned over, put his hands on either side of my face, gave me a kiss on the cheek, laid down and went back to sleep. At that moment my apprehension left and I knew everything would be o.k.. At that moment Hunter left a permanent mark on my heart.