Wednesday, September 24, 2008

What's been going on...

I am sorry I haven't posted in a while - life has been a little overwhelming. Okay - I lied. It's been a LOT overwhelming.

Michael has had a hard time adjusting to school. I attended open house last Wednesday night and Michael's teacher said she had some concerns and wanted to meet with us to discuss some things. I wasn't very surprised. I could tell that Michael wasn't enjoying kindergarten and he had been acting out at home. One of the problems is he doesn't like going to school all day. He keeps asking why he can't go half a day like he did last year. Another thing is, they color a lot in kindergarten and, as I've mentioned before, Michael HATES coloring.

But, the most troubling problem is that our bright and outgoing little boy has become so introverted. And, as his mother, it is breaking my heart. Although none of the children treat Michael any different, Michael KNOWS he is different from all the other children. We try very hard to downplay Michael's illness and remind him of the ways he is just like any other 5 year old but he is very smart and perceptive. He knows he is the only one that misses school every Friday to get chemo. And, he knows no other children in his school have a port. He's also expressed to me anxiety that he is going to throw up in class and be embarrassed in front of all the other kids. So, although I know how to calm some of his fears, some are just beyond my capability to fix and I am having a hard time dealing with it.

Jeff and I made an appointment to meet with Michael's teacher before school last Thursday morning and we discussed a lot of things. She told us Michael is not doing his "work". Not because he isn't able to but just because he refuses. She asked us for suggestions on how to do deal with this, given Michael's circumstances, and we told her to treat him like she would any other student that refused to cooperate. Although Michael has experienced terrible things in his young life, that doesn't excuse not listening to his teacher. We also asked if Michael was interacting with the other kids and she said "no", he tends to sit off by himself. That was disheartening to hear for both Jeff and I.

Thursday afternoon, the after school program called and I had to leave work early because Michael was nauseous and complaining of a stomach ache. So, we came home and that night Michael and I had a long talk. He got out a lot of emotions and feelings and we had a good cry together. Friday morning, his attitude was much better and I sent him to school for an hour before chemo. His teacher sent home a note commenting on the improvement in his attitude.

Monday morning I put my little buddy on the bus and headed to work. About an hour later, I received a call from the school nurse saying Michael was sick, so once again I left work and went to pick him up. He spent the whole afternoon in his bed (no TV or music) doing some of the work that he had refused to do in school. And when he was finally allowed out of bed, he wasn't allowed to go outside and play. I told him if he was too sick to go to school, he was too sick to go outside and play. By dinner time, he was asking me when he could go back to school.

I am happy to report that today was an outstanding day for Michael. Jeff said he was like the old Michael when he got off the bus this afternoon. And, he got not one, but two stickers for doing his work. And for the first time, he mentioned a new friend by name and told us some things about him. I told him we will contact the new friend's parents and see if he can come over to play. Michael has also been invited to a birthday party this weekend and is looking forward to going. Let's hope we are over our little hump and things get easier from here on out.

Aside from all of the issues at school, there are a few other things that have been bothering me. One is Michael's overall condition. He has been complaining of terrible pains in his stomach and back. They seem to come and go and, of course, he wasn't experiencing them when we saw Dr. Kennedy last Friday. He has other pains, too - yesterday it was his arms that hurt and today it was his legs. When I asked him why he didn't play with the other kids on the playground at school, he said he couldn't keep up with them so I think his stamina isn't 100% either. I know all of this is to be expected, but it is so hard to know when to push him and when to let things slide.

Another concern is that Michael's mouth is getting so sensitive and his taste buds so wacky, that we are having a hard time finding things to feed him. He definitely likes "bland" foods now. So, I made him macaroni and cheese and biscuits Saturday night (you can't get any blander than that) and he said the macaroni hurt his mouth. So, he had biscuits and milk for dinner. I'm afraid we are going to run out of ideas to feed him all together.

Michael did have chemo last Friday and it went well but he was very sick all weekend. So sick, that he only put up a little fuss (instead of the usual huge fuss) to take his anti-nausea medicine. And he needed it right through Sunday instead of just Saturday. He's also had a terrible time sleeping since Friday. This happened once before for a couple of days after treatment and no one knows why.

On top of all this, I am very stressed at work. I got behind the week Michael was in the hospital and I have had a difficult time getting caught up (this is a busy time of year in our industry). My bosses are very understanding but I need to get things in order for my own peace of mind. But that just seems impossible to do when there seems to always be something going on with Michael. I know I will get over this hump too, but in the meantime, I'm overwhelmed.

On a happier note, we did travel to Pennsylvania a week ago Friday and Michael was finally able to meet Darby. I will share the details of that trip and some pictures next time. Until then, please keep Michael in your thoughts and prayers, JoAnne.


Lisa said...

It breaks my heart that your family has to endure this. You are such a fantastic family to bravely handle all the challenges you are given. I wish I could offer you anything to make even one moment a bit better, but we both know it isn't possible. Just know you are in my heart every day, and always here if you need a safe place. Sending much love your way!

Susie Harris said...

It's so good to hear from you. Michael has been given a huge load to carry... you too for that matter. You are such a blessing to me. When I read what yall are going through I dont see a Mom feeling sorry for herself and her son. I see a strong woman that calls her "problems" humps. Your humps my dear are making you one very strong cookie! I know what you must be thinking... me strong? You have no choice right... Well you have taken what life has given you one day at a time. What I can tell is that you are one great Mom. You are raising one terrific kid too. Letting him be a kid while behind closed doors your heart is breaking.
I only wished I could tell you it will all be better soon but I cant. What I can tell you is that Im praying for you and Michael like crazy and I so look up to you. You are the Mom I wished I could be.... Michael is such a blessing. I know that he will gain his strength from you even when you feel weak inside sometimes. ((many many hugs to you both))... Hang in there my sweet friend!