Thursday, June 6, 2013

Tough times

     I have had a a chaotic couple of months! My body was so tight. I was having really severe, painful spasms in my whole body. I ended up having surgery on my head and neck for Chiari Malformation. That has nothing to do with my CP. I was in ICU for a week and in the hospital for two weeks. Now I am staying at Marianjoy rehabilitation hospital because my muscle tone had decreased so much that I was having trouble swallowing and I couldn't even drive my wheelchair. I am not allowed to eat anything by mouth right now. I had to have surgery to get a G Tube (that's a feeding tube). It's really hard to cope with that, because I love eating! I told my therapists that my teeth are bored. Although, I know some people are going through so much worse times like the people in Oklahoma. 

     I am feeling a little homesick tonight.  My parents have helped me a lot because one of them is always here with me. My mom is trying to get me to switch beds with her, but that couch doesn't look comfortable so I'll stay in my amazing bed with the special mattress. It is sooooo comfortable, I love it!  My conscience tells me to pray every day that I will get my regular life back again.  Always don't wallow in self pity. Just try to tough it out. It will make things a whole lot better. Every person has a lot of rough times, you are not the only one. 


  1. Great post, Jack. I know you worked hard and will be sprung from the hospital tomorrow. It has been a long road. Continue to pray, God is with you. See you very soon. Love, Aunt Judy

  2. Hi Jack! My name is Carter. I live about 15 minutes from Six Flags Great America, just over the border of Illinois in Wisconsin. I live with my mom and dad and two sisters and my dog Maisie (a Weimaraner). I am turning 12 soon and I have spastic quad CP ( what? - I love your blog title). It takes me a long time to get my words out using my communication system (I am smart but I can't talk) so my mom is helping me type this post and I am eye-gazing yes or no to what ideas she comes up with to tell you. I am in a wheelchair, I have trouble swallowing and I have a G-tube too! I also have a special mattress on my bed, a baclofen pump and I have had a spinal fusion. I have had 14 pneumonias and 17 surgeries in my life and I have spent alot of time in the hospital too. I am just recovering from being really sick for 2 months. I feel your pain, man!!! I love baseball, football, hockey (Go, Blackhawks!), watching all kinds of sports on TV, cooking and cooking shows, going to movies, the beach and DisneyWorld. It sounds like we have a lot in common! Keep working hard, Jack, on your rehab and keep a smile on your face. I will pray for a speedy recovery for you!

    1. Hey Carter! You sound like an awesome kid! I'm sorry it took me so long to reply. My summer has been crazy busy so far. We have much in common, it's almost scary! I also have a dog named Bailey. I appreciate you praying for me, I will pray for you, too! I love your attitude!