Tara and I went to bed about 10:30p last evening after starting Henry's TPN (internal nutrient feeding) and woke up about 7:30a. That was the first time since two weeks pre-diagnosis that we've slept uninterrupted all night. This was to be a harbinger of the day to come. Henry was happy and pleasant and seemingly pain-free for almost the entire day. He ate cheetos for breakfast, pretzels and cookies for snack and several small servings of mac and cheese over the course of the day. We cautiously went shopping for some more comfortable clothes for the hospital and when we got home, he played on the floor with his trucks and cars. Best of all - he laughed. He laughed and he giggled and joked around.
Bath time and medicine time are still very difficult. These times seem to remind him that all is not normal. Medicine that he took easily before this last stint in the hospital is now a four-handed operation - and sometime two legs. Fortunately, we have only one medicine to give twice a day - and only through tomorrow. Bath time tonight was especially tough. It seems that whenever he is reminded of the tubes in his chest he says 'my belly hurts'. To me this is clearly his form of denial. We had to put a special water tight bandage on over his central line to keep it from getting wet. It didn't really work that well and to boot it created another crying spell.
We prepared his TPN for tonight and put him to bed. Reviewing the day in my head, I realized that the normal day allowed me to forget about Henry's cancer for a time. I too had my own forms of denial. When presented with his fighting and rejection I reacted poorly. I was angered by his spitting his medicines and fighting bath. Couldn't we have just one normal day? Of course its not his fault. I felt awfully for becoming angry. I'm glad Tara was there as I was able to vent far from Henry.
I feel in a way that we must allow these oscillations of emotion for ourselves and to lean on each other for breaks. This just caught me off guard today. I don't want to waste my time with him being upset or angry.
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4 comments:
Just learned of Henry's cancer through a visit with Al in San Diego. Please let us know if there is anything we can do.
- Matt
Hello all. I've been reading your blog almost every day, Brian. Thanks so much. My heart and love goes out to all of you. You are so strong and such good parents and people. I couldn't admire you more. I am in San Diego with Katie, home soon. Lots and lots of love from us both. Give Henry a big hug for us. Cousin Fran
Bryan, Thx for posting the pictures of Super Hero-he is such a cutie.
Am glad you and Tara were able to get a good nights rest.
Please don't beat yourself up for a moment of frustration- Henry has the current title of Super Hero, and we humans have to accept our emotions.
sleep well. nk
Wow, Henry looks good and Tara too!
I love to read how you all are doing. Thank you for sharing your thoughts with us. As cousin Fran said, we admire you, Tara and your whole family. You are only human though and have your own emotions to deal with. Don't beat yourself up for having them. Henry knows how much you love him!
God bless you.
Susan Herren
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