I belong to a few different cancer mom groups on Facebook. They are a safe place for us cancer moms to express our feelings as to what we are going through on any given day, during any kind of treatment, and beyond. The other day I was scrolling though Facebook and saw a post on one of these groups asking for other to share positive stories of AML survivors of 2 or more years, using chemo only. I immediately got excited to share hope with this other cancer momma, found a photo of Kenedi (26 months remission) and began to type, and as I typed, I was stopped by the tears.
“I should be able to post TWO kids in this picture!” I thought as I typed.
“This is all so unfair.”
“Why Kendal and not Kenedi?”
I continued typing and hit send and sat back for a moment. As the tears came, I became mad at myself for being so upset when I should be so grateful that Kenedi is still here and still doing so well. But I realized I was. I was grateful for every single second with Kenedi. But that doesn’t mean I have to stop grieving the loss of Kendal. I can be grateful while grieving.
There is a stigma around death. Especially the death of a child. I get it. I understand. Before this was my reality, I too would become frozen with fear, or at the very least, uncomfortable, when someone would mention they had experienced the death of one of their children. I wouldn’t know what to do or say and often I would change the subject to something I thought was, more pleasant. But after experiencing the loss of Kendal, of living daily with her not here, if I’ve learned anything it would be that we want nothing more than to talk about her. To say her name. To talk about the memories we have with her. And will continue to talk about her until the end of our days.
(of a disease) predicted to lead to death, especially “terminal cancer”
Hearing the words “your child’s cancer is terminal” is one devastating sentence. A sentence you fear every day after hearing your child has cancer. It is heartbreaking when all the hope you have, all the hope you have built up during the initial fight, during the countless hours spent in the hospital keeping things clean, keeping your child safe, comes crashing down on you. It feels like you are suffocating in a room full of people who are breathing just fine. But after that initial shock wears off, the grieving of your future fades, and time moves on, you realize that terminal isn’t the curse you imagined it to be.
It’s 9 am and I already want a drink. Kenedi woke up at 430 am after I got only about 4 hours of sleep. Kendal is up but screaming for her iPad and Teagan is hiding in the corner hoarding it. We barely survived breakfast and remenents of the peanut butter toast are now strewn about. The toy room looks like a bomb went off and Daniel tiger is blaring on the big screen. I cannot help but think “is it nap time yet?!”
The other day I bought a Halloween outfit for Teagan and then a coordinating one for Kenedi. I didn’t buy a matching one for Kendal. Teagan was with me shopping and when she asked me why we weren’t getting Kendal one, all I could muster up to say in the middle of target without breaking down in tears was “she doesn’t need one sweetie”, and thankfully, my typically-curious-question-machine-4-year-old didn’t push any further.
It’s been a while since I’ve written anything. It’s not that I haven’t wanted to, it’s just that I couldn’t get myself to do it. Writing down, or saying out loud some of the thoughts you have once you are told “there are no more options” for your child is a difficult task. I’ve felt paralyzed and sometimes ashamed by these thoughts and feelings, but it’s time to get them out.
I haven’t updated in a while so this will be a long one, as a lot has happened in the recent weeks.
In the 2.5 weeks since being discharged from round 2 of chemo, Kendal has attended 22 different clinic appointments in preparation for her bone marrow transplant. But before those appointments even happened, she had a repeat bone marrow biopsy completed to ensure her remission status. And that is where all the drama began.
I have spent the last month trudging my way through the roller coaster of emotions that come with grief. Grieving, yet again, the loss of a part of Kendal’s childhood, grieving me missing a part of Teagan and Kenedi’s lives, the loss of my amazing job (I resigned due to Kendal’s transplant and her not being able to go back to daycare for the foreseeable future), the loss of the normal life we had built up again after cancer rocked it the first time. I’ve been mad, sad, happy, depressed, inconsolable and everything in between. But most of all I’ve felt guilt. An overwhelming amout of guilt. All of this has left me less than inspired to write something. Until today.