Monday, June 16th: An Attempt to Return to Normal

Today is my first week day home from the hospital and I want to be downstairs when parents arrive. While Sara takes care of the Monday morning clean up, and I hang out upstairs until I hear the first parent arrive. I go downstairs and say hello and hang out until most of the kids are here. Before everyone arrives, I am so tired. It doesn’t take long.  

Although I have been in the hospital for a week, and I am still recovering from surgery, there is this desire to return to normal. To do things that seem normal. Because right now in my life, there is so little that seems normal.

I am usually a person with quite a bit of energy, able to motor through even on days when I really don’t feel like doing things. I am surprised at how little I have right now. Sitting on my bed staring at the wall would normally not be appealing to me, but lately, I find myself very comfortable losing myself in the cool, blue smoothness before me.

At lunchtime I wander downstairs for food. One of the older kids that is visiting for the day wants to learn to knit. Some of the younger kids know how, and she would like to learn too. Between bites of my sandwich, I teach her. I hang out until she gets the hang of it, and then I go upstairs. How can doing so little make you so exhausted? I am ready for a nap.

When I wake up, it is late in the afternoon, almost pick up time for the kids. I go outside to enjoy the sunshine and say hello. A mom stops by to check in on me. Her child isn’t even here today.

Kaileigh warms up some lasagne that Brett brought by over the weekend. There is another meatless one that Joanne dropped off. This takes care of everyone in my family. It is nice to have delicious, healthy food right in our fridge, ready to go. There is so much love packed into it, I can feel myself getting stronger.

Steve and I snuggle on the couch and watch 24 with bowls of ice cream. Things seem almost normal.

I go to bed, but lay there and cannot sleep. I have a little fever, but this is not unusual. I am worried about my stoma. Maybe it is not the right color. I can’t see it through the bag I have on, so how will I know? Is there stool on my skin? Do I have an infection? What will I do? I have phone numbers for people to call in an emergency, but is this an emergency? No, this is a panic attack. I realize this and take out all of the material that I have on stomas. I read as much as I can and try to calm down. Eventually, I get tired, and bored. I clean up all my papers and go to sleep.

Tuesday, June 17

Kaileigh will leave to join Josh and his family on their annual camping trip today. She has been such a great help to me throughout this ordeal, I am glad that she will be getting away, even if only for a short time. She will be back on Thursday, so she can go to the oncologist and the surgeon with me on Friday. She doesn’t want to miss anything.

I feel badly about this interruption in Kaileigh’s life. Prior to June 4th, the day I told her the results of my colonoscopy, she was hard at work, writing her masters thesis on plant genetics. She was looking forward finding an apartment in Boston, and finding a job in the field she has trained for. Now, everything is on hold. She is back home, sleeping on an air mattress in the hallway, in the limbo that is now my life.  

I worry that she will not finish, because I have interrupted the flow of her life. I know this is not  her personality, but I can’t stop the worry. This is not what I want for my children, to have to be so concerned about their mother that they can not get on with their own lives. This is not the mother that I want to be.

Kaileigh comes to give me a hug. “‘bye Mama,”  she says. “I love you.  I’ll be back soon.”

Wednesday, June 18th

I get up early and Steve and I go for a walk to the park and back. Even though I have been walking a little everyday, it is still tiring. This whole thing is tiring. The waiting, the wondering, waiting some more. Not only is it tiring, it is boring. And it is not like I don’t have things I want to do, it is that I don’t have the energy to do them. When I first came home from the hospital, I thought, great, I am going to have all this extra time this week. I will write, I will paint, I will move some of the stuff that clutters my life out of it. If only I had the energy.  

In truth, if I had the energy, I would be working, helping out with the kids. When I am upstairs listening to the sounds in my house, the sounds of the children make me smile. I miss being with them. It is Wednesday, and by now I can sit with the kids for a little while, but I am not much help. I try to be upbeat and playful, but know that I am spending a fair amount of time with my head in my hands just watching. Then, I get tired and need a nap. I am so lucky Alex has been able to fill in for me and help Sara. It is nice to be able to completely trust that he will help out and things will not fall apart. Children won’t escape or eat crayons or treat each other unkindly. He will play games with them and guide them in the gentlest manner. All of my children have grown up with my daycare, and all have learned to be great helpers, but Alex is the one who has had to come through for me in the most difficult of times. It is nice to know that I can count on him.

Steve has busy working on a story about the hotel workers downtown this evening. They were to meet with the mayoral candidates this afternoon, and things are running late. Alex and I are on our own for dinner, but one of the Mom’s stopped by with some wonderful chicken soup. I consider this and realize even though I have hit this bump in the road, I have a really nice life.