In The Car

Sometimes the hardest part of my day is being in the car. It's where my brain decides is the best place for intrusive thoughts and all the dark thoughts about my child's diagnosis. Maybe putting them here will help me get them out of my brain, my own Pensieve. 

When my oldest was 2 or so, we went to a get-together at my husband's coworker's house. There was a pool she could swim in which was a major selling point. When we got there, his wife brought out all of these little plastic animal toys, explaining that her son loved them. I came to realize that her son died when he was little and she had saved these toys. She later told me she also had a daughter who was stillborn. At the time, I remember being so sad for her and relieved that it wasn't my reality. My kid was healthy. Whenever kids die in car crashes, at summer camps, or in bombed buildings, there's sadness - but also maybe a bit of relief that it isn't my reality. I wonder if that's how people look at us now. Sadness and relief. 

I wonder, if your child has to die, if it would be better to lose them suddenly and unexpectedly or to watch them slowly die from a horrible disease. The first way would be like ripping off a band-aid. Quick and painful. Maybe they didn't know they were going to die. Maybe they didn't feel anything. But, you'd have to live thinking about all the moments you didn't appreciate while they were happening, all the things you didn't say the last time you saw them. The second way, you (and maybe your kid) know the end is coming, you savor all the moments as much as possible, but you have to watch them slowly lose their ability to walk and talk, to be in pain, to stop eating or drinking. You have to make decisions that will end their life, but you get to say all the things you want to say. Either one is horrible. And while people always say they can't imagine what it would be like to lose a child, losing a child seems to happen to a lot of people. 

What if I chose to only have one kid and then I had to watch them die? What will my life look like with only one child if she does die? What will our family look like in the aftermath, and will we as a family be able to survive the trauma of it all?  

After I dropped my kids off at daycare this morning, some of the staff said that they were praying for my daughter and that they just knew she was going to beat it. I thanked them and then practically ran out the building before sobbing in my car. The song that was playing when I started my car?

A Song to Cry to in Your Car

Kelly Clarkson, "Stronger"

What Is Going On In There?

We are on week three of my daughter's radiation treatments, and so far so good. She doesn't have any fatigue yet, and is feeling pretty good. Her treatment in total takes about 10 minutes. We walk back to the radiation machine room. She lays down on the table. They put a warm blanket on her. They put the radiation mask over her head and snap it down on the table so she can't move. They raise the table and make sure it is lined up correctly. I tell her I love her, and we all step out of the room leaving her there. The doors slide shut, and I wait.   

I wonder what it is like to lay there with the lights and the noise, not being able to move. I wonder how it feels. I wonder what she thinks about while she is in there, listening to Lindsey Stirling and squeezing her squishy toy. 

I was talking to my youngest daughter the other night before bed. I asked her how she was feeling about her sister's treatments. If she felt left out or scared. She said that she was worried that she would have spiderwebs in her brain when she was older. She said that she was worried that it hurt her sister to have her forehead cut open and that it would hurt her too. I told her that what her sister has is really rare. That her dad and I never had that and that she probably wouldn't either. 

Its really hard to see your kid going through something that you've never experienced, that you can only support them through. It really hard to tell them that their sibling probably won't have to experience this and have them know how truly unfair it is. I know none of us can ever know what bad things will happen to us in life, but at least I had a full childhood, a young adulthood, and got to determine what my life looks like as an adult. I got to experience having her. And it's hard to face that my daughter may not get those same opportunities. 

At the end of May, right after I got the pathology report back, I took her in for her post-surgery MRI. The MRI was sedated because they needed to scan her brain and spine. The nurse who took us back for anesthesia commented on how smart my daughter is and that she would probably go to an Ivy League school someday. I smiled weakly and said maybe, while thinking in my head that she might not make it to middle school. 

I know the importance of staying positive, but it is really difficult sometimes, especially when all of the published information measures overall survival in months. A better prognosis just means more months than average. 

I try to check in with my daughter to see how she is handling everything, without disclosing too much of my own thinking. What are her fears? Her worries? I wish I could crawl inside her head and see what's in there. So far, she hasn't said much. Just that she tries not to think about it. Maybe that's my problem. 

These are all just songs she likes

Daisy The Great & AJR, "Record Player"

Some Lightness

In navigating all of these medical treatments and appointments, we have found so many caring, helpful people to help us through it. From the very beginning, we've felt treated with care.

In the ER, the nurses had to insert an IV as she was being admitted to the hospital. They talked my daughter through the procedure, let her feel the different devices, and then distracted her while they poked around her veins. Then, they brought her art kits and card games to help pass the time.

The first time we met our oncologist, he sat with us in the hospital for an hour talking through research and therapy options, medical trials, and next steps for our daughter. He was kind to her and answered all of her questions.  

The Saturday before her surgery, doctors on the floor brought my daughter a sausage biscuit and bo' rounds for breakfast because she told them Bojangles is her favorite restaurant. These are people we only saw a few times who did what they could in that moment to make something scary and uncertain a little lighter. 

Now that she is getting daily radiation treatments and weekly appointments in clinic, we see so many of the same faces. 

We have a child life specialist at every appointment who pops in to see how my daughter is doing. She found out that my daughter likes making up jokes, so she brought her a notebook to write jokes in and a joke book she found. Every appointment they share jokes. The other nurses and doctors ask to hear jokes as well. 

The radiation techs ask my daughter questions about her hobbies. They brought in a speaker from home so that she can listen to music while getting her treatments.

The nurse navigator asks how we are doing and they truly want to make sure that we have the resources we need to get through everything. 

And just yesterday when we showed up for radiation, the social worker gave her a brand new iPad she can take to appointments. We have experienced truly amazing displays of kindness and care throughout this entire journey from people who go beyond what they have to do. 

I was reading a post by another mom whose child has brain cancer. She wrote:

Every day, countless families are thrown into the similar turmoil, whether through cancer or another illness. The grief, guilt, and regrets are universal. To our small yet vital community that has protected us, I ask you to help others connect as well. Together, we can navigate this side of humanity with grace.

The world is kind because we choose to make it so. People are kind because they want to be and because they can be.

In a moment where it feels like individualistic and cruel policies are winning, where babies are being ripped from their parents off the streets, and people are losing access to vital resources, we have to remember the power we have in being choosing to be kind. We truly don't know what the person next to us is carrying. 

Just a song

Langhorne Slim, "Mighty Soul"