Christopher's Journey

This year marks sixteen years of hospitals. He is remarkable. Christopher accepts everyday and makes the best of it. Always,he worries about others. Maybe this is our lesson, for those of us who know and will come to know Christopher; he is on a pathway and a journey. When Chris was born, he was visited everday by a nun named Sister Laura. She prayed over his bassinet. When we left the hospital she warned me that he was a special child and to "watch" him. I didn't think much about that conversation until Christopher was diagnosed with ALL,(leukemia), at 3 years old. The cancer ended but and he had a new road full of seizures, brain surgeries and progressive disabilities. When we were first told of the leukemia, I went back to St.Agnes Hospital to find Sister Laura; she had been transferred.
Throughout the pain and hard times, we meet and come in contact with special people that touch our lives. Christopher is leading the journey...by the Grace of GOD, and with his own laughter.

Journal

Sunday, June 14, 2009 8:39 AM CDT

It sometimes takes me a while to get to update. I sometimes don't want to go there by the end of the day. Christopher is happy. That is the good news.

Two weeks ago he had 102 fever and luckily it was bronchial. When he first became a resident there, and was very much in distress, he was unlucky enough to have this one "on call" nurse named Melinda, who is horrible. I will never forget the time I spoke to her early in the morning when he was going by ambulance, alone, to a new hospital and I asked her to give me her assessment of him. Her response was "how should I know, I am standing in my kitchen". I will never forget that, and I will never forget that nothing was done about her. Well this time, she was on call too. She did nothing, including not returning two phone calls. Again nothing was done about her. The whole thing was abomimidable.
Why does he stay there? Because he is happy, he is clean and the direct care workers that take care of him on a daily and nightly basis are exceptional people that he loves and they love him. The system is alllowed to be so broken.
It is so frustrating. At the risk of imploding, one has to walk away for a little while to cope with the rest of your life.
Well,yesterday I got his haircut, his teeth, a shower and shaved. Part of that is a Saturday ritual whereby he calls me on Saturday morning and his greeting is "Mom, you coming?" He likes me to fuss over him when I am there and I like to. That staff runs non stop. The new kids are sweet but hands on and run. It is like having 7 out of control toddlers high on a sugar 24/7. They are very involved medically. They also like Christopher so much that they won't stay out of his room. One sleeps with him, one rips through his closet and drawers, (I had to straighten those out too) and one won't leave. He either tries to take his drinks, pull down his TV or rock in his chair. When Christopher was so sick this child wouldn't leave, he is non verbal but he sat in
Chris' rocker and stared as him. It was mayhem; at the same time you could see the bond growing between them. I don't know what is gonna be. I know they love him.

It is a pretty poignant time of year again. Tricia is graduating. Christopher's would be graduating class is home from their first year of college, (or slumming - depending on the kid -lol). I find I miss him so much. That sounds ungrateful and I don't mean it that way, but until he was 9 or 10 years old, there was a different outlook. Now he is very retarded. While he is content and in his own world, the deterioration is profound.

His father is having a time with it too, I know. We make sure one of us is there on the weekend and Grannie and Grandpa also, when they can.
Chris- his dad, is getting remarried next month. He was trying to get Chris down to the wedding. It just won't work. I think I talked him out of it. There is guilt and the automatic thought that he is who he was and would like and understand it- like the others would. In reality, he would just be confused as to why his father wasn't with him alone; and Trish and John too. Health wise, the weather will be too hot and it is too long of a drive. Also, Chris wouldn't have a support system. Wendy - one of the Christopher's favorites, (part of the mutual adoration club), would maybe bring him, however there would be no support for her. Trish and John are in the wedding and not one person on that side of the family could or would handle him medically. It would be too much for all three. My step son- Chris (who knew there were so many Chris'- luckily we have nicknames haha), volunteered to go and help Wendy...but it just isn't worth the stress. I have to be out of town for work- picture me at that wedding! haha
I think it helped that I told him not to do it and that it was ok that he did not include Christopher. Christopher was different and it was ok. I know that hurt him, and it took me a good week to regain my balance- that and some others stressors caused a pretty good meltdown. This is just so incidious.
It has been a hard road with Chris (his father) and we have a lot of history, bad and good, but this alone is our history. It is quite a bond. Bad or good we have to have patience with each other.
Today is Christopher's favorite day- his dad is going to visit, and the Subway series in on television- Yankees vs Mets. They will go to McDonalds. Couldn't be better, oh and Wendy is working!

Hospital Information:

Oberkirch Children's Residence

Lake Katrine, NY

Links:

E-mail Author: ldgallagher@optonline.net

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