I get asked daily how I’m doing or what people can do to help. Most of the time I answer “doing well!” And “we are good, I’ll let you know if we need anything!” Which is mostly true. But sometimes I’m not being fully honest.
If I’m being honest. No. I’m not alright. I mean sure, we have good days, we have great days even! But the truth is this all freaken sucks. It’s all unfair. And I hate most everything about this nightmare.
If I’m being honest, I wish I had a job I got to go to every day. For one, I’ve never had the desire to be a stay at home mom, so being forced into the role was a hard pill to swallow. For two, I wish I could be financially contributing to my family. I know that being at the hospital with Kendal is where I should be. Where I need to be, but that doesn’t mean I still don’t long for something else, too. And for three, if I’m still being honest, I’m jealous of the 9 hours a day Aaron gets to spend at work, only in charge of himself and no small human. I’m rarely ever alone. I go from the hospital to home with the other two kiddos. And I understand it’s work. He’s at WORK. It’s not relaxing, but I’m still jealous of that alone time.
If I’m being honest, Aaron and I often argue about who has to stay with Kendal on the weekends or sometimes even during the week because we both dislike staying at the hospital not because we don’t want to spend time with Kendal.
If I’m being honest, I’d much rather be on a beach drinking a margarita far, far away from everyone, far away from this whole situation, than spend one more night sleeping on that stupid hospital couch. You see, we love Kendal so very much. So much so that we are doing everything we can to save her, but that doesn’t mean we enjoy being “on the inside” with her. Living with a 2 year old is difficult already. But living with a 2 year old who has an NG tube and 3 lines coming out of her chest all while confined to a 10×15 room where she’s not allowed to walk on the gross floor because she has absolutely no immune system for MONTHS on end, I’m convinced, could be a form of torture.
If I’m being honest there’s a mix of jealousy and hope when I see another kiddo doing well post transplant or even post AML chemo only. My heart hurts because that is not Kendal’s journey but I’m so hopeful for those kids and those families to never know the hell we are going through.
If I’m being honest amidst all the pain, agony and anger upon learning of Kendal’s transplant failing, there was a part of me that was a bit relieved (gasp!). This is something I’ve struggled with feeling. And haven’t admitted often. But the truth is, when we were told there was nothing left we could do for Kendal, there was a part of me that was relieved knowing that this whole thing would finally have an end. Of course not the end that we wanted, but at least have an end. An end to all her pain, an end to the constant uncertainties and worry, an end to living in the hospital. Not a fun happy-go-lucky end. But at least an end. And after it ended, we could pick up the pieces and move on.
If I’m being honest I have a very hard time asking for help. But we’ve been so blessed by family and friends who wiggle their way in and help us with things we didn’t even know we needed help with.
If I’m being honest, I don’t know if my heart can handle one of my kids dying before me. And further – I don’t think I can handle watching them die. Sitting and waiting as they slip away in front of my eyes while there’s nothing I can do.
If I’m being honest, just typing that statement out is beyond difficult.
But if I’m being honest, it’s something we have to be cognizant of. Since Kendal’s failed transplant, the likelihood of Kendal dying is high. I have always tried to be realistic while going through this ordeal. Realistic but hopeful. Cautiously optimistic. Being that way doesn’t mean I’m being negative or thinking the worst. It doesn’t mean I’m not hopeful. It just means I am not in denial.
If I’m being honest, having a child (or two) with cancer has changed me in a way I cannot explain. As a mom. As a wife. As a person. It has also ignited a fire in me to do whatever I can to help fight and find a cure for this beast known as AML.
If I’m being honest, writing things for the public to read is something that is way out of my comfort zone – much like public speaking – but I do them both anyway. I write and talk about our story to raise awareness of childhood cancer. Of pediatric AML. I know that it makes people uncomfortable when they see some of the things that happen. It makes people uncomfortable when they hear about children dying. That’s okay. It should make them uncomfortable. But I don’t share for pitty or to make others sad or uncomfortable. I share to let people in on what it’s really like to have children diagnosed with cancer. I share to raise awareness. I share to raise funds. I share for more research. I share to find a cure.
If I’m being honest.