The Wheels on the Bus

At the end of last week, I had one of those dreams that stays in your system long after you wake. In it, the kids and I were balanced together on top of one big bike. Suddenly, the frame, with us still on it, lifted off the wheels and fell to the side, leaving the wheels still standing.

Last week could have knocked off our balance, though the groundwork was laid a few weeks before that.

At that time, our afterschool babysitter left. It was on good terms – We love Marinda but she has a lot going on right now. (One of her amazing actions made the front page of the NYTimes, and watch for her soon on Katie Couric’s show.) But that meant we needed to replace her.

Finding and training a sitter requires time and work. Then add the emotional component of the personal nature of the job, compounded by the fact that he or she needs to fill in for me while I am down. I want them to be some projection of the best of me, fill in the cracks for who I am not, BUT not be so good that the kids preferred her (or him).*

The search felt overwhelming, so I put on blinders and took it step by step. Or maybe I settled for the first taker. Who knows. We found fabulous Dot: Lots of experience, good references, and a mom who was loving yet could lay down the law.

Out of our necessity, she started during a chemo week, but I was confident that she could handle it.

In the meantime, I went into chemo knowing that there was a cold brewing in my throat, though the staff encouraged me to do chemo anyway Not to blame them; it is their job to push things forward. It is my job to say yes or no. But I was getting sick and my ability to advocate for myself was weak.

Returning home after chemo, I retreated to my bed and slept for the next two days. I forgot that my husband was traveling all week, so the kids were essentially passed from sitter to sitter for days on end and totally without a mooring. I was no help. Dot stuck out her two days then literally ran, shaking and screaming, from our house.

That is all just runway. This past week was the steep takeoff. My white count dropped and a cold settled in. I lost my voice on Monday. Started the search for a sitter, then, due to my lack of voice, had to accede control as my husband and an assistant conducted the phone interviews. Led a religious education class after school for 11 very active first graders (thankfully, Rachel helped me through this one).

Still, this felt like alot but not too much. At the end of the week, friends asked why I didn’t see a doctor. Reflecting on my week, I realized I saw many doctors, but none for me. I took the dog to two different vets for two different issues. One son to two already-scheduled doctor appointments, and the other son fractured his foot mid-week and the pediatric foot doctor kindly agreed to squeeze us in on Halloween.  Husband either working or again out of town, so I was the adult for the appointments. With no voice for any of them.

Toss in Halloween. We typically create a haunted house. On Halloween morning, I looked at the decorations and the room that would need to be converted, then made an executive decision to simply cobble together some outside decorations and call it a holiday.

After making the decision to bag the haunted house, I decided to cancel Friday’s CT scan. The drinks and the contrast certainly would not help my throat to heal, and I coughed violently every time I reclined, which would mess up the scans.

I asked my ten-year-old son to call Dana Farber for me. I planned to whisper or write the instructions to him as he spoke.

He dialed Dana Farber and got a live person. I could hear only his side of the conversation and the thoughts in my head.

“Hi. My mom is sick and can’t talk, so I am calling for her.”
This can’t be the first time this has happened, I think.

“She needs to cancel her appointment.” His tone was polite yet firm.

A pause.

“No. She can’t come in. That is why she needs to cancel her appointment.”
Ah yes. Their job is to keep events moving forward. My job is to say yes or no. Politely yet firmly.

“Mom, when do you want to reschedule?”
Nov 14, I write.

“She wants to come in on November 14.”

He turns to me. “How about next Tuesday? You can do it right before chemo.”
I recall how sick I got the last time I did the scan extra close to chemo. I violently shake my head no.

“November 14,” he states firmly into the phone.

Another pause.

“That is not November 14. She said November 14.”
Wow. I didn’t realize he actually regards my word as law.

“Mom, they have an opening at the Shapiro Center.”
Where is that? I scribble.

“Where is that?” he asks them. After a pause, he turns to me. “At the hospital, not at Dana Farber.”

Seeing my face fall (routine is my lifeline in this process), he speaks into the phone. “Do you have anything at Dana Farber on the 14^th?”

Then he turns to me again. “This is the only appointment if you want the 14^th.”
I weighed my need for routine during treatments against the schedule for my life outside treatments and nod yes.

Impressed, I realized that it is way more fun to have him negotiate for me than against me.

During the week, I took it minute by minute and we made it through each of the new events, in addition to our regularly scheduled programs. All doctors were seen and next steps gathered. We found a sitter who came for a 30-minute interview that turned into 7 hours of work at our house. She was up to the task but noted that the job was way more intense than our ad indicated. So she is smart, too. Thankfully, she agreed to return this week, and I will kiss the ground she walks on.

As I enter this week, I am grateful for the help that supports us, including yours. Without it, the wheels would definitely be coming off the bus. Or off the bike. Thank you for holding us all up.

With love and gratitude,
Marie

*This wording courtesy of my wonderful friend, Anna Huckabee Tull, who sets words to music.