Balancing on a precipice

The 2am hour is becoming more and more familiar as of late. :/ I promised myself I would use this blog as a) a therapy of sorts for myself and b) a way to honestly put every emotion possible out there for any readers so that they could either see there are others out there feeling their pain too, or to educate people on the reality of having a child with cancer.
So, with that in mind, allow me to be blunt: I am seriously depressed. This past month has been God awful. While Elena is still progressing as well as she can be, I’ve been battling the reality of our new life, and the idea of this “new normal”, as the cancer community puts it. I don’t fucking want a new normal. Not for me or my husband, not for Annalise and certainly not for Elena. My dear friend pointed out to me tonight that I haven’t been taking care of myself (eating properly, sleeping regularly, motivating myself) because I don’t want to feel happy and energized, it doesn’t fit the situation we’re in. Wow. I love an outsiders perspective. She hit the hammer on the nail with that one.
I honestly feel like our family has been through too much prior to Elena’s diagnosis…we’ve been climbing Everest for years. Throw cancer on top of it and suddenly the fiercest mountain in the world is on steroids, we’re not even halfway up it and we’re running out of oxygen.
I’ve been applying to different foundations for assistance with our bills. It’s not my proudest moment, for sure. Our problem with this is, owning our own business it’s not as cut and dry to say “these are the hours and the pay we’ve lost.” No, ours is based on the fact that while we are away from our store (I have not worked since Elena’s diagnosis and Mario has been taking time off for trips to the hospital and extra time with our oldest), our expenses THERE go up and our sales go down. I thank God for the kindness and generosity of friends, family and strangers, truly. Without them, we would have sunk long ago. As it is, we’re still struggling to keep our heads above the water.
I cannot stress enough how difficult it is to remain being a parent to your healthy child(ren) while being so incredibly focused on the sick one. Annalise has felt me pulling away, and I am trying so damn hard not to. I see myself losing my patience with her more and more, and yet it’s like watching a car accident happen in slow motion, being unable to stop it. When I’m calm and rational, even then, my energy for her energy is just not there. “Not this second, sweetheart,” or “maybe later” have become all too frequent. Hand to God, I’m not that mother. And it breaks my heart that I’m finding myself becoming it. Annalise is my ray of sunshine. She is love personified. And my fear, on top of so many others, is that if I don’t get this right, if I fail her, she will break. I’m praying desperately I can be better, for her sake, everyday.
My relationships with those around me has drastically changed. The people I thought would be here for us the most have suddenly lost their voices. I am incredibly grateful to those who have stuck by me, and disdainfully disgusted with others who have all but abandoned myself and my family (which BY THE WAY, happens to be their family)! I don’t want your money, I don’t want you to fix my problems with a snap of your finger. I want your support. For fuck’s sake, I want your love and the fact that I apparently need to address this simple request with people breaks my heart.
And Elena….to feel so powerless as a mother is a type of heartache I cannot put into words. I had a moment leaving the hospital after her inpatient chemo last week, when she’s talking, saying “so excited…home!” She’s speaking more and more and this is such an amazing time in her development. I looked at her and had such a desperate desire to know what she would be like right now had we not needed to pump her tiny body full of poison. I wonder how long her hair would be, and if she would have finally been able to sit still long enough for Mommy to do something with it. I’m waiting for our next inpatient stay. With the VAC series of chemo she received, her counts are going to tank, and it’s really just a matter of days before we’re stuck in the hospital. I’m not happy about it, but with cold and flu season upon us, without her immune system functioning, it’s the safest place for her to be, so I’ll keep that with me. Looking at her chemo schedule, I see a monthly VAC series as of January and fear what it will do to her. Can you imagine looking at your child, wondering just HOW sick they will get? Knowing it’s to come, but having no control to stop it, and no insight as to just how severe it will be.
Truth be told, I’m balancing so precariously on an unstable ledge, hoping with every fiber of my being, that something will give, has to give, and soon. Miracles happen everyday, right?


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