I am somewhat reluctant to spam my farm blog by pouring out my heart for my daughter but I’m going to do it anyway. She is a part of the farm. So there.
Things change every day. Every day. More frequently than that. Every hour. On Tuesday the 15th I went to work and my daughter had Osteosarcoma. I got to work and the doctors had changed their diagnosis to Ewing’s sarcoma.
We had planned to start Wednesday with a hearing test because one of the chemo drugs they planned to use could cause loss of hearing. Now that plan was scrapped. We had a start time and no other detail.
I need a plan.
A reader wrote to me this week suggesting we work our plan one hour at a time. One day is too big of a bite. We need to break it down. This hour I’m not going to cry. This hour I’m not going to say it is unfair. This hour I am going to work the plan.
This specific hour, 6-7 on Sunday the 20th, Julie and I are packing eggs for tomorrow’s delivery and doing a little housework. As we work we sip our coffee and talk a little bit about the next step. What is the next step?
We need to be packed and ready. If our little girl gets a fever we have to be at the local hospital within 30 minutes. We need to have a script ready for the hospital explaining our situation and letting them know we are on our way. We have to notify our oncologist to prepare to transfer our daughter from the local hospital to the one in St. Louis. Oh, God!
OK. Too much.
I need to pick up some pajamas for her today. Maybe load up a board game in her backpack and a favorite blanket.
That’s better. I can handle that. At some point today I need to write out information about her port and make sure the phone numbers are in our phones.
But there is more going on in our lives than just my daughter’s cancer. I am married. Our marriage doesn’t pause. I have to continue to invest in my relationship with Julie. I have to help Julie to widen her focus. It’s not all about my wife and daughter. We have 3 other children to love. We have each other too. Human relationships are difficult and require effort to maintain. We have to make the effort even if we don’t feel like it.
The hospital gave us a book about how teens deal with sibling cancer. One point it made is that some siblings can feel dumped on by the additional chore load. I laugh because I know they are talking about city kids. Chores? Ha. But my kids do chores, man. In fact, while Julie and I were in the hospital the kids ran the farm. An aunt commented that they just all magically knew what to do.
They don’t magically know what to do. We have trained our children. We have made ourselves redundant on the farm. That didn’t happen in a day. That happened slowly, over time and in small increments. One minute here, an hour there, a comment, a criticism, a reminder not to leave the water running in the pasture.
We share our observations with the kids. We ask for their input. We make adjustments. We train and re-train each other.
We learn together.
That’s how we manage the farm. That’s also how we manage cancer.
We sit together. We talk about it. We cry a little bit. But a little at a time, as a family, we work to understand what is going on and find ways to help each other out.
I have no idea what our kids will ask us today. I don’t know what hurdles we will have to overcome today. Today is too far away. But I know it is 7:00 now and I haven’t opened the chickens or milked the cow yet so I need to go do that.
I have conquered the next hour. That’s the best I can do.
Normally I try to publish my reading journal on Sundays. This week I found it difficult to focus on reading. I have been reading Lord Emsworth and Others by P.G. Wodehouse. Hilarious. Truly hilarious.