Struggling

Jack is really struggling at this time. His pain, stomach issues, asthma and frustration are really up at this time.

School this year has been really hard. The past two weeks he has cried every day before going to school. He says he hates school. He has the best teachers he has ever had. I have been in constant contact with them. I drive Jack and pick him up from school as he has asked. We have tried to get to the bottom of what has been bothering him. He is not being picked on. Well, he says he is not. When trying to get to the bottom of everything it seems that it is his frustration that is the main problem. He says even on a morning when I start out feeling okay I get really tired early at school. He is getting frustrated if he makes mistakes or messes up. He is noticing that certain tasks are difficult. He got frustrated because he cut the ear off a scarecrow he was cutting. It was no good. He wanted it thrown in the garbage. He saw the mistake as it not being good or like everyone else's. No matter how much we seem to talk to him about being different and that being OK and good, but he still is frustrated. He felt he was tired and was having a hard time so that is why he messed up on the scarecrow. He said to me that when he gets tired he makes mistakes. He said everyday I don't feel good and my stomach hurts. I smell things and have to throw up. He said then my arms and legs hurt. I have tried to explain to him that it is his disease that is causing it. I have tried to explain that being different is OK. I have explained that it is normal to get frustrated with not feeling well. I have told him that he is strong and I am proud of him.


It is still hard to send him off and know he does not want to go. It is so hard because I know his disease is acting up. He has trouble at night, waking up with pain. Even in the evenings or weekends he is having stomach issues. I am aware that those things are real. At the same time if I kept him home every time he did not feel well he would never go to school. It is so hard to send him off and wake him for school when he has been up at night. We take it day by day and that is all we can do. It is frustrating when he is going through a period where everyday is pretty bad. I hate when we go through periods of many issues at once.


He also is upset and noticing his weight. He has asked me several times how to get skinny. We are trying with his food and watching his sugar. It seems like no matter what the weight keeps coming. He is growing as well. He had his MRI. We are now waiting on the results. We are due to go back to Cleveland but I must reschedule the appointment. He sees his specialist here in December.

Keep Jack in your prayers. He is really starting to put together the realization of his issues and illness and how it effects him every day. It is seeming to be a lot on a 6yr old. Every smile on his face I see is a inspiration.