From time to time, I think about what it means to be a mother. There's the joy in watching your child grow up, take their first steps in your own kitchen, and then climb up the school bus steps and out into the world on their own a little at a time. But there's also pain and loss. There is the obvious pain of childbirth and the loss of an identity independent from your children. There's all the little losses and pains of watching those children grow up and move away and need you less and less. My youngest still comes into my room to snuggle every morning and I don't remember when my oldest stopped doing that.
When I got pregnant with my oldest, my husband and I had conversations about what we would do if our child was born with a serious disability. Without really knowing what that meant, we said of course we would accept and work through whatever we were handed. That's the deal you make when you decide to bring a child into the world. But the reality that we may have to watch that child die was not one that we truly considered. I mean, how can you conceive of that, really, unless you are faced with it? To go from watching someone take their first breath to taking their last?
As we come up on a year of cancer, anticipatory grief has been hitting me pretty hard. Ask DMG/DIPG parents how long their kids lived after diagnosis and you will get a range of answers - some in weeks, but most in months. 3 months, 5 months, 8 months, 13 months, 16 months. How many months will we get? In some ways, its compounded by the fact that she looks like a cancer patient now, and I can't pretend that everything is normal when we are out in public anymore. Radiation has stolen her hair. She looks thinner and has a ganglier walk now. My photo memories keep showing me pictures from a year ago, two years ago, when everyone was healthier and we had no idea what was coming.
Last week, we were at Charlotte Shout, a local art and music festival. We stopped at a booth that was selling customizable hats. My daughters picked out hats and patches to go on them. The woman at the booth helped them figure out patch placement and ironed everything on. It was really cool since my kid wears a baseball hat everyday now to cover up her patchy hair. The next day, the woman texted me. She wanted to get connected with someone who could help her organize an event for kids who have lost their hair like my daughter. I connected her with our social worker. It was really nice, and I hope she is able to put something together. But, also, it's another reminder that the marks of this diseases are more and more obvious.
During and immediately after radiation, I was doing ok. Crying less, worrying less despite whatever I wrote here. But, last week I got an email from our DMG nurse navigator. I had sent her a few clinical trial options we've been considering along with some other questions. She told me what the side effects of these treatments have been and how kids have responded, and it just felt like we truly don't have any good treatment options. The trials that seemed promising have all lost funding or been deemed unprofitable by pharmaceutical companies. It feels like we are reaching the end of what is possible and available for us, but I'm not ready to stop trying to find something.
We have an oncology appointment next week. We haven't had one for a month, and I am dreading it and looking forward to it at the same time. I want to figure out the next steps, but I also don't want more hard conversations.
As a mother, I have to hold it together in front of my kids. To the best of my ability, I have to make sure that they aren't scared, that they feel taken care of and secure, and that they have a good quality of life while they are here with me. And that means I have to shove down all my grief and fears and worries and heartbreak in front of them. Of course we still have conversations about cancer treatments and fears, but I let them lead it and try not to push too much.
Today in the car on the way home from school, my youngest asked what I thought heaven was like. I asked them what they thought. My youngest said it was green with the softest grass ever. My oldest said it was probably filled with colors that we've never seen on Earth. They determined that you get to pick how old you look in heaven. My youngest would want to be 4 because she misses having long hair. They both thought that they would see their dog and their grandfather's dog and they wouldn't be fighting in heaven.
We Liked The Yelly Parts
Petey, "Lean Into Life"
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