Last night we watched the Patriots win yet another Super Bowl.  Kudos to them.  It wasn’t that interesting of a game in my opinion.  I was in it mainly for the commercials.  Part way through the game though, something hit me.  That awful panic feeling in your stomach.  Where you begin to sweat and your heart rate rises.  Your breathing quickens.  And suddenly I’m flashed back to February 5th, 2017, sitting in a tiny hospital room with our Kendal Mae, praying that tomorrow we learn she hasn’t really relapsed and that her neutropenia is just from a nasty virus.

I’m going to start this off pretty blunt.  I am exhausted from trying to be stronger than I feel.  It’s weird to say it out loud but it’s something I’ve been thinking and feeling for a while now.  Something that I keep trying to push back down inside.  Something I try to trick myself out of thinking.  But here it is.  I’m not that strong.  I’m not always okay.

It is so hard to even begin this post, but I feel the need to share.  Mostly because it’s something I think about repeatedly day in and day out.  Sometimes 1500 times a day.  Sometimes once a day.  But I can’t get it out of my head.  And if I’ve learned anything it’s that the best way to get something out of my head is to write it down.  So here goes…

Call it not paranoia, but caution

Last week we had a bit of a scare in our house with the Kenedi bug.  We got a call from daycare that Kenedi had blood coming out of her left ear.  Although her left ear has always been her problem ear, and she has had many ear infections in the past, as well as 2 sets of tubes, I immediately went into panic mode.  Thankfully, Aaron was home and ran to get her and we headed into our pediatrician right away.

You may have seen me posting lately about “Team Twice the Fight”.  And you may have heard me talking about “the campaign”.  Well, I’m super nervous, but also very excited that I can finally share what it’s all about.  What I’ve been working on the last 4 months.  What has become my passion.  What has kept me moving when I have wanted to stop.  What I’m doing in memory of Kendal.  In honor of Kenedi.  And for everyone who has been touched by a blood cancer.

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.

ter·mi·nal
adjective
(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?!”