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.

There are plenty of different types of guilt.

Mom guilt
Wife guilt
Work guilt
Mom guilt
Plain old guilt
Did I mention mom guilt?
Feeling guilty about feeling guilty
Survivors guilt

Mom guilt – As a mom, I feel the need to take everything on and do everything myself when it comes to my kids. Well, to be honest, part of that is just my perfectionist “I can do it all don’t worry” attitude. But this attitude often leads to my feeling guilty about all the things I end up missing. Teagan is in gymnastics and dance and preschool and I am feeling so guilty that I’m missing it.  I feel guilty that my mom friends are driving her around to practices and school.  I may miss her dance recital (in person) this year, and that stings. I feel guilty that I can’t be there when they are sick. I know that I’m with Kendal who needs me right now, but that doesn’t erase the mom guilt that is caused by all the other things I’m missing in Teagan and Kenedi’s lives. But never once do they complain.

Wife guilt – life with small kids is hard. But add in the stress that is caused by cancer and living 500 miles apart, things are even harder. Aaron and I have what I consider a strong marriage, but that doesn’t mean we don’t fight. I get after him about silly things like what Teags and Kenedi wore that day if it didn’t match or the dress was the wrong season.  Or if I notice the house is messy when we are face timing.  Which often leads to an argument which ultimately leads to me feeling guilty for being cranky at him for something so silly. I feel guilty that I take out all my stress on him. And guilty that he’s often left picking up the pieces when I have a bit of a breakdown from said guilt/stress. But never once does he complain.

Work guilt – I recently had to resign from my job due to the fact that Kendal can’t go to daycare for the foreseeable future. I feel so guilty that I had to up and leave them with no warning, no replacement, creating more work for my co-workers. Thankfully, they have been nothing but supportive and understanding, but I still feel awful about it.  But never once did they complain.

Guilt – on a daily bases I feel bad or guilty about at least one thing that doesn’t fall into the above categories.  About yelling at one of the nurses or getting snotty with the doctors. Being annoyed with the food service people. Frustrated that the Starbucks is closed again. Guilt that I haven’t been able to say “thank you” to those who have reached out to us, those who have helped our family, have donated time or money or just have been an ear to vent to during this crazy ride. And the list goes on.

Survivors guilt – this is something I’ve been struggling with since the twins were off treatment. Nights they would be up all night teething and I would be so frustrated and tired that they just wouldn’t sleep, I’d then also be overcome with guilt. Feeling guilty for being frustrated with my girls for something so little when I knew there were other cancer families out there – families that have lost children to cancer – that would give anything to be up at 3 am dealing with a teething child.  So there I’d be, tired, frustrated, crying and feeling guilty. I often feel so grateful that the twins survived and in the same breath question why they did and others with the same disease haven’t.  And that guilt has never faded.  Even after relapse, it’s still present.

I feel guilty that Kendal is responding so well to her treatment and I still can’t get my head out of the self-loathing sand.

I feel guilty for feeling bad for myself when Kendal is the one fighting.

I feel guilty for getting annoyed with her tantrums when she doesn’t understand what’s going on.

I feel guilty for being grateful that Kenedi hasn’t relapsed – how will we explain that to Kendal later in life. Your identical twin didn’t relapse, sorry you did.

I feel guilty for thinking that if Kenedi is going to relapse she needs to hurry up and do it. I know that if Kenedi relapses when we get on the other side of Kendal’s transplant, I won’t be able to survive it. (We are praying fiercely that she will not relapse and so far her labs look good).

I feel guilty for even having the thoughts of “what if the worst happens” and to be frank – the worst would be Kendal dying.  I’m sure that is as uncomfortable to read as it is for me to type. But that’s our reality.  I tell her that dying is not even an option. I tell her that all the time. But still feel guilty for that thought even crossing my mind.

Each day on the inside fighting cancer with your child brings on new emotions. Just when you think you’ve got a handle on the situation, a new situation arises and triggers a new emotion, or feeling of guilt. But each day I do my BEST to find a piece of joy that keeps me grounded. And each night before bed, I think about that piece of joy. I hold onto it to keep my emotions in check.

I’ve learned a few things during our journey. I’ve learned to enjoy the little things, to live in the present, I’ve learned to find the joy, I’ve learned to stop being so scheduled (haven’t mastered that one yet), I’ve learned to lean on those amazing friends mentioned above. The ones that don’t think twice to help out, that don’t complain when you can’t be helpful like you normally would be.  I’ve learned to be grateful for an understanding job and supportive community.  And I’ve learned that I need to stop feeling guilty for things I cannot control.

Usually I tie up my blog posts in a nice little bow with some piece of advice, but not today. Today these are just my thoughts. My emotions. It’s me writing raw and from the heart and sharing what it’s like being a mom of a child with cancer.