Tuesday, August 7, 2012

"It is amazing what little harm doctors do when one considers all the opportunity they have.” I like to read quotes from Samuel L. Clemens, a.k.a. Mark Twain. He was funny, realistic and unapologetic. I do prefer to just read his quotes, which is ironic. In his speech entitled “Disappearance of Literature”, in describing a “classic” tale such as the example he gave of Paradise Lost, he said “It’s a classic….something that everybody wants to have read and nobody wants to read.” So, basically, anything he has written, too. My brain just can’t read any thoughts of length anymore. For the sake of this writing, we’ll pretend it ever could. I’ve always had a focus issue, but now it seems more voluminous…. (did you get that one? Issue and volume, because I was talking about books. Clever, yes?) Eli had some testing done today that went as expected. Preliminary heart tests looked good. His hearing has taken another hit, but the loss still seems to be just the higher ranges and his conversational hearing seems to be unaffected as of yet. So, that was kind of expected. His ANC is climbing, and he did not have to have any blood transfusions today which means his body is taking over. So, as I always say to people who ask, he is having a good day. I try to only ever answer in current terms because the sky falls without warning and without regard to status. I’ve had a weird day today, and the last couple of days, really. I’ve been observing myself, as I’ve said that I sometimes do, and I am an interesting study. I’ve described before the conscious effort of controlling your thoughts so that your mind doesn’t wander into sad territory and get lost. It takes a lot of strength and distraction to control the direction of your thoughts every minute of every day, to hold the reins so tight so steady for so long while you daily trudge through trivial monotony. It’s kind of claustrophobic, really, I think, to be mentally and emotionally held. I've felt a little less in control lately. I wonder if I’m weakening in some way, if I’m teetering on some kind of edge, which would be weird for me, I think, speaking as one who has observed myself all my life. It seems out of character, yet I have never been known for endurance of any kind so it would make sense that I would be showing wear and weakness by now. Maybe I’m like Superman who needs the sun for strength; I also need my son for strength. I’ve been away from him now for a couple of weeks. I think, too, now being a member of this community of childhood cancer fighters, I read so many stories about other children and it just weighs on me. For one reason, it is a reminder of evil in the world, but also because it is a reminder of what we personally face. Reading one mom’s post today, I am reminded that Eli has a one in five chance of living more than five years. I can count more than five kids who are fighting Eli’s type of cancer. It strikes fear in your gut. I’ve also felt guilty lately because I noticed that I have begun to hate seeing old pictures of him around the house. I’m not sure exactly why except that the pictures make me feel like I’ve been tricked, or duped into believing and planning a future for our family that wasn’t going to happen all along. I’m tired of seeing this false promise of a healthy little boy staring back at me when now I know differently. It irritates me when I stop to get ice out of the icemaker in the refrigerator door and he looks back at me from a picture taken when he was one in my dad’s childhood rocker. I grit my teeth when I put away toys in the bins under the pictures from preschool when he was two, three, and four. Even now, sitting here in the darkness of the computer room (because all the light bulbs are burned out and I can’t reach the fixture to replace them, not because I’m all Edgar Allen Poe) I feel the presence of the poster size kindergarten picture on the wall at my shoulder and it angers me. I feel foolish to have been so na├»ve into thinking all was perfect, that he was perfect. Then I just have to tighten my grip on the reins and hold it steady over the rocky parts of the road to regain control of my thoughts. So, I don’t know, I’m sure the anger will come and go all along the way. It’s probably a step in some sort of 12-step coping scenario or maybe I’m finally tossing in the sanity towel or maybe it’s just hormones. The picture I’m sharing tonight is of the kids at home, just playing in the yard. Believe it or not, they have room for one more.


  1. Without actually knowing you, I'm going to guess that no, you are not throwing in the sanity towel nor are you weakening. I am the mother of a 2.5 year old with Duchenne, a fatally progressive muscle wasting disease. I know what it feels like not to have a 1 in 5 chance of living for more than 5 years, but to be told that my child will not grow up at all. He may reach a chronologically "adult" age like 23, but he will never be "grown". I am strong most of the time. I am happy and feel blessed most of the time. Most. But then there are the times it slaps me in the face and I fall to my knees or flat on the floor. Everything around me feels dark, cold, bitter. I am sad, I am angry, I am hurt, I feel lost, and out of control. But those moments pass as I know that even at my darkest, the Lord is still by my side. I have been praying for you (as has my whole congregation at Barker's Mill) and I will continue to do so. Please know that is normal and ok to feel exactly as you do from time to time. We are human and God knows we struggle. To face losing a child is the most difficult thing on Earth - one that God Himself knows firsthand! So lean on Him and He will light your way.

  2. What an inspiration you are Katherine, and a rock for your family. I have said before and wonder every day how anyone can face catastrophic life without the comfort of knowing our Lord is with them always, and always is always. I will add your son, and thank you for your efforts at Baker's Mill.


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