“But words are things, a small drop of ink, falling like dew upon a thought, produces that which makes thousands, perhaps millions THINK.”
Curtis is home today. He has an occasional habit of staying up and waking early, which means very few hours of sleep. I’m not sure how many he had last night, but if he doesn’t get a full 10 hours a night, it’s hell the next morning. This morning was no different. After much yelling and cajoling, he remained home. Which is turning out OK. I realize that he should not be rewarded and have “fun”, because he chose not to sleep and got to stay home. Except these are unusual circumstances, we are currently living under.
Mom came over this morning and I was able to get to Friday-Morning-Therapy for a little bit. When I returned she pointed out that Gregory had quite a bit of petechiae on his left wrist. Usually he get it when I remove adhesive tape. He also had a haircut a while ago and it caused his neck to itch, his scratching caused petechiae. It kind of freaked me out a little. We are going a full week between blood counts and I’m a little anxious about it. I’m keeping my eyes peeled for signs of low platelets. Of which, this is one. I was supposed to change his central line dressing, yesterday. I worked yesterday and we were all home. I did not want to change his dressing with the usual “witching hour” stuff. So when I got home from coffee, I bathed him and changed his dressing. I’m keeping my eyes out for signs. He seems to be doing ok. There has not been a significant amount of petechiae with his dressing change. Time will tell. Thanks the powers that be for the peds onc unit. If he should need anything this weekend, they are always available. As is Dr R. I have no idea what Dr R’s life must be like. Always at the beck and call of families in crisis. He handles it with such grace and humor. I have such a deep respect and love for everyone involved with our care.
This whole match thing. Now that we have the possibility for a match, it’s brought on all new emotions. Honestly? Fear is the biggest one. At least for now, Gregory is “normal”. The beggining of “treatment’ brings a whole new reality. I keep getting these moments of imagining what diffents things will look like. Driving home from coffee I had this vision of a car trip to Seattle with a very sick little boy, racing towards a treatment that will save his life and complications that could end it. There are moments when I wish we could just transfuse him for the rest of his life and call it good. Also, the reality of being away from home is scary. I know I have friends and family over there. Yet, they are not my friends and family, from home. I am going to have to lean on people who I have not been actively involved with for quite a few years. When family does come to Seattle, I’m going to need to learn how to balance spending time with them and finding a way to get away, too. While being confident that Gregory will be OK during my brief absence. There are just so many things. I try not to dwell on them. I really do. It’s just that I find myself overcome with “stuff”, out of the blue. Almost like the feeling of a panic attack. They never last long, but they are powerful. They come on at times when I’m doing something mundane and routine. Driving down the road, doing dishes, folding laundry. Thankfully, my knitting has never brought on these moments. Knitting is someplace I can go and just be. I can’t tell you how grateful I am for finding the magic of sticks and string.
On another completely different note: I’m finally getting a chance to read stuff I’ve always wanted to read. I’ve never read Jane Austen and it’s been on my “to do” list for some time. Betsy lent me her copies to read. I’m so very excited to read them. I’ve been trying to think of things to read that will keep me challenged, yet be somewhat light and enjoyable in their story line. I’d also like to read more of the classics. I read quite a few, several years back. I would love some suggestions. Here’s a disclaimer, though. I read a bunch of Steinbeck. While I absolutely LOVE Stenbeck, I cannot ready anything tragic. I’d also like to read some Oscar Wilde, I think I would really enjoy it. So. If you wouldn’t mind, I’d love suggestions. I also need to get Jen Lancaster’s sequals to “Bitter is the New Black”. LOVED that book.
It is amazing what has come into our lives. I’ve always wanted to have family pictures done. We have never had a family portrait taken. While I’m not a fan of formal “professional” photos, I have always wanted some casual pictures of all five of us. These is a fantastic organization called, The Littlest Heros Project. Photographers from around the world, sign up to help families capture moments in their lives. With Spokane being as ‘small’ as it is, the photographer for Spokane is a friend of a friend. Her name is Lana Burnette and we will hopefully have our session before Gregory starts “real” Chemo. I’d like for him to be happy and feeling good.
I’m a little slow are responding to some of you. Please know that I WILL get back to you. Your words and intentions are priceless.
Yvonne: You rock, woman. Thank you so very much for the hillarious book. It’s going with me to Seattle. You know me far better than I give you credit for. The bookmark? My favorite, ever.
Tana, Lisa, Alicia, Celeste: Where would I be without you? We will never know, ’cause I do have you. Muwah. Lipstick and all.
Our Potential Donor: Thank you for renewing my hope. Even if it doesn’t work out, the idea that there is a “possible” match has help me tremendously.
Larry: What can I say, that is appropriate for this audience? Except you would like it if I did. THAT is what I thank you for.