I’ve been sitting here, shaking hands, heart pounding in my chest, gut tied up in knots, trying to decide if I should really write what I’m about to write. Which, on a normal day, I would take as a sign NOT to write about it, write something trite and carry on. Not today.
I’m depressed. Angry, anxious, afraid, stuck and sad. I cannot find the light at the end of the tunnel. This life I am living seems so extraordinarily out of my control. I cannot focus on anything for too terribly long. I have zero patience and snap at the kids, constantly. We are still living in a partially finished home. When I say partially finished, I’m using the term lightly. I’ve been hesitant to write about this particular aspect because it involves Daddy. He’s working his butt off trying to keep us financially afloat. He is also working hard at keeping his own mental state on an even keel. I do not place blame for the state of our home on him. Yet I am terribly angry about our living conditions. The fact that he and I do not have a bedroom of our own drives me crazy. A place where we can escape and have a wee bit of alone time. Which only exacerbates my mental state. It’s easy for someone on the outside to say, “Well, just MAKE him do it.” Uh, hello? Do you live my life? Would YOU do that to your partner under the same circumstances? The tiny details of a life lived with someone else are what drives the decisions. I cannot MAKE anyone do anything. Nor can I “let” anyone else do the work. It’s just too complicated, right now. We are financially strapped. I’m constantly worried about the next expense and how we are going to cover it. I cannot get a job. With Daddy’s schedule and the schedule of The OffSpring, it just will not work. Add my dream of going back to school? Impossible.
We live our lives between trips to school, doctor appointments and counseling for C & A. Everything else either costs money, puts Gregory at risk of being exposed to some illness or is just too much for me to handle navigating the extreme differences between my kids. Something outside of these walls that all three of them can participate in, is free and they all enjoy (oh, and has a small risk of infection) is pretty hard to find. So, we hunker down and vegetate at home. In a home that makes me sad, angry, anxious and depressed. See a pattern?
One could say that I should just stuff it all and carry on. Plaster on a happy face and just fake it. What’s the saying? “Fake it, ’til you make it”? NOT my M.O. Besides, all my overhead compartments are already stuffed to the gills with things I had to “carry on” over. I’m still stuffing stuff into the tiny nooks and crannies. Worries over C’s school performance, the adjustment to leaving his elementary school in June. I have a whole list of concerns for C. A and her security, her health, her friendships. Her ability to navigate disappointments. All of these things can be helped if I spend just a little bit of time with them. Real time. One-on-one. Yet, I cannot pull myself out of this long enough to focus on their needs. I am so mired in “stuff” that I am stuck and feel like I’m in quick sand. If I don’t move, I won’t sink any further. I won’t get out, either.
I should be over. The Moon. Elated. That Gregory is where he is at. At least social expectations tell me that. Comparatively I should be overjoyed at his progress. I. Can’t. Get. There. From. Here. I keep hoping that my worries and fears for his “tomorrow” will abate. I feel like I am in a holding pattern, just waiting for the next thing to pop up. He is not an adult, who has already developed and grown. With every step of his life comes the question of “How is his body going to handle this?” There is no rule book or enough case studies to even give me a glimpse of what is to come for him. Not just in a year or ten years, but tomorrow. Later today.
Childhood Cancer is one nasty bitch.
Yes, I could up my “better living through chemistry”. Yes, I could seek therapy. Yes, I could just do “it”. The “it” just seems so overwhelming and I can’t find the energy resources. No, there is nothing I can drop to fix it, either. I’m living pretty scantily these days.
My work with 46 Mommas and St Baldrick’s keeps me going. It also adds to the chaos. It’s work and work is GOOD for me. Yet, finding a way for me to handle it as work and not just a little thing on the side is challenging. I think the answer would be to get up earlier then The OffSpring and actually pretend I have a work schedule. This is something I cannot and won’t give up. Raising awareness and funds for childhood cancer research is now part of my being. Weaved into my soul.
The experiences of the last two-plus years have changed our lives and family in a way that cannot be explained. We are doing our best, muddling through and making it up along the way. This thing called Living Life is hard enough as it is. We have layer, upon layer of complications. Things beyond our control. I often wonder if I will ever be able to consistently find those Happy Go Lucky moments. Those moments when I can unabashedly throw my head back in laughter and truly enjoy life. I feel guilty as hell for feeling this way, too. Gregory is a survivor. Comparatively he is doing awesome. The fear and anxiety are real, though. The damage to the sibs is real. The fall out on my personal relationships is real. I feel like I have so much responsibility and absolutely no control over any kind of outcomes.
If you are still with me and reading, I applaud you. This is an ugly side of Childhood Cancer. I’m hoping to have released some demons. I appreciate you allowing me to spread the burden a bit. My heart and my head are heavy. Working through this, moment to moment. Day by day. Does it get better? I don’t believe it does. I think we just get used to having it as a guest in our lives. We learn to live around it, tolerate it. I’m still quite a Noob in this world of Childhood Cancer. Maybe tomorrow, or this afternoon, will be better. If not better, at least different than this moment.
With a heart that is broken,
***Won’t you help me fund a cure for Childhood Cancer? Do it now. Make a donation on my soon-to-be-bald noggin for Childhood Cancer Research.
Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.