The teacher came today. I think she will do a great job. Riley tried at first to be bossy. Interrupting sentences and her train of thought. She quickly figured him out. It took a while to sort the homework out. She made a list of assignments for him to tackle. She will be back next Tuesday.
I had Trevor stay in his room while she was here. But later in the evening he came out and we all watched a little TV as a treat. Trevor decided to stick a balloon string in his mouth and chew on it. He is kind of an oral boy. If it fits in his mouth he will put it there. I made him pop the balloon and throw it all away. Riley might have wanted to play with it later when it was covered in mouth germs from a vomit boy. It also gave me an excuse to toss a balloon. I have 4 lingering on the ceiling of my two story entry, that we can't reach.
Tom came home and I headed to the school. Today was the high school orientation for eighth graders. I am glad I went. There are papers that need to be turned in. Who knows, in six months Riley might be able to attend school again. I want to make sure that if he cant carry a full load of classes, he at least gets the ones he really needs for college.
The councilor recommends a resume or summary for Riley so the school has a name and face to go with all the accommodations they might need to make for him. No PE for as long as the picc line is in. A picc can last up to two years. Riley will have his in for at least a year. Even after successful treatment, they will be drawing blood and checking on him regularly.
At the end of the meeting, it hit me that I didn't even know if my baby would be alive come August, let alone attending high school with all these other children in the room. A parent from football came up to give me a hug. She had heard about Riley. I cried on her shoulder. All the dreams and ambitions of all these families, and I just count in days and weeks now.
Tom gave me a hug when I got home. I spoke to Riley about what I had heard at the meeting. Then Tom read my blog about how upset I was with Trevor getting sick. Tom was... not happy to put it delicately. He reminded me that I have two children. I know that. Trevor would help an old lady cross the street with her bags. Riley wouldn't see even see the old lady. My job is to keep both boys from being hit by a passing car.
I know Trevor didn't want to be sick or purposefully get sick. But if I erred, it was on the side of caution. We can't afford any mistakes. Trevor got it. He stayed in his room all day. He weighs as much as I do. If he had really wanted to rebel I couldn't stop him. He slept most of the day anyway, an indication he needed the rest. I don't allow TV when children are home sick. You miss school, you're sick, then you need to rest. TV is a treat. Riley didn't get any TV either. He stayed in his room as a precaution most of the day. Tom thinks that the TV rule is excessive.
Tom is a TV addict. We can't go on vacation with him anywhere that doesn't have a TV. My children can live without it for a day. We didn't even last the day anyway, by the time Tom got home from work we all were watching House. He was mad because I was more worried about Riley's health than Trevors feelings. How could I be mad at Trevor for getting sick? He couldn't help it. That was Tom's argument.
I went outside and cried some more. I realize Tom is as distressed as I am. I love my boys very much, both boys. He should not have doubted me. Trevor knows how serious this all is. I cannot help responding the way I did. Maybe people are right who tell me I should ship my sick children away, but I disagree. I would rather do what I did yesterday with keeping each boy in his room. Isolating everyone until the danger has passed, including myself. I will decontaminate Trevor's room today. By isolating him until he felt better that is the only room I have to stress over. I feel pretty secure that I did the best I could to contain the germ. If I had to do it over again I would probably feel the same way and have the same response.
I am glad the day is passed and behind us. Today is another hurdle. We are going to ask how good a match is the bone marrow donor they may have found. After 20 red cell transfusions the success of the graft falls. The most successful surgeries are done within 3 months of diagnosis. It might be better to go with the bone marrow than wait. The treatment puts Riley back in the hospital for another long stay. We wouldn't even know how successful the surgery was until 100 days after. That is the amount of time the doctors give for rejection.
Contact a total stranger, inconveinience himself, and ask if he is still willing and able to save a child's life that he doesn't even know. Please say yes. Then do we do it? Torture Riley to the edge of death?
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First of all. Tom is right! I was kind of shocked when I read your blog. Your behavior was so out of character. Then I thought about how stressed I was when Kendalynn was diagnosed with Diabetes. Thank God for insulin! And I prayed for God to give you calmness to get thru the storm.
ReplyDeleteSecond......the more I have learned about AA. The more I agree with Tom about the transplant as soon as possible. It might have been different if Rileys platlets had been higher to start with but he was sooooo low to begin with. It is scary to think you would need to wait 3 more months.
Third......I have the caregiver certification now and one thing I learned in class was 2 tbls of chlorine bleach to 1 gallon of water. Not any more than 2 tbls. Use it to clean everything. It will even kill the aids virus. Make up a bucket and use it as needed.
Love you all and see you soon.
Dearest Steph,
ReplyDeleteIt helped me (and still does) to not think so much about the future. You are falling down the rabbit hole and I have lived it myself with William. The fear is like a Tsunami. I could not bear waiting for the other shoe to drop all the time. You are doing such an amazing job. There is comfort in the fact that are no better parents for these children than you and Tom. If I could impart one thing from my own life: it is helpful to release and drop expectations - you will not suffer as much pain. There are no expectations except those we create in our own minds. We don't know what tomorrow will bring, and suffering about it makes us lose today. Try to stay present and enjoy the present. Living in today and the present, is the only way to live fully and treasure our lives and blessings. There is no tomorrow yet, and the past is in our own minds. There is only today, this moment, and the love and fullness of today with our children and families. One day and step at a time. When you are afraid, breath deeply, slowly, and deliberately and be present. It calms the fear and allows you to be open to God.
It makes me sad to hear that people would read things and not see the frustration you were dealing with and allow you to vent. Weather its normal behavior or not. As a single parent I had to choose between two children, and one of them was not my own. Granted your not single but you were alone and you had to deal with it. Until someone walks in those shoes they will never understand that horrible empty feeling it gives a person.
ReplyDeleteI do have a few suggestion...
Look for a support group online. I'm sure I saw some so they should not be hard to find. There you will met other parents who are dealing with the same issues you are. It is what helped Karen the most when Bill was sick. Talking to others who are wearing those same shoes.
See if you can put together some sort of call list. People willing to come help during times like that. If they can spare an hour or two to be with Riley so you can take care of Trever. I say it that way because on a 'normal' day Riley has to come first. This allows Trever to be the center of your attention at a time he needs it.
Learn from your actions, you'll be doing that a lot I'm afraid. There is so much to learn, so many unknowns. Note I did not say mistakes! You did the best you could do at the time, only you can decide what should or should not be done again.
And my last one.... Give in on the Tv. Life has changed and sometime the rules need to change too. Set no tv times, study times, what ever. Decide what type of tv they can watch... educational. Movies are better, but I also don't watch tv. Its sort of a middle ground, and you'll be looking for a lot more middle grounds for a while. Pick your battles, this is a small easy one compared to others.