Keeping it REAL?

I like to think that just because I believe I know something, that I am able to flawlessly embody it and apply it immediately. I’m easily frustrated with myself when this proves not the case. In short, I still vacillate about my perception of Nyah’s care.

While I feel exceedingly blessed that she has not experienced nearly any of the many possible reactions to all the medications, the fact that they are what they are; Nausea, vomiting, loss of appetite, blood in the urine, diarrhea, liver damage, metal taste in mouth, hormonal changes, heart damage, mouth sores, fever, aches, fatigue, migraines, stomach pain, numbness in fingers and toes, blurred or double vision, seizures…  to name just a few,  continues to impress upon me that there must be a better way. We have researched so many alternatives, lighthearted at any new options previously unknown, only to be let down each time that they aren’t an option for Leukemia……

In circling back to the Chemo course, I try again to see the benefits outweighing the compromise of her quality of life. Though, as I said , her quality is surprisingly good, it still weighs on me that it can all change at any moment. Time may take its toll, as well as drugs yet to come….  I confess that I have never understood compromising what is happening NOW for a possible projected outcome in the near, let alone far, future. 3 years is exceedingly far when ANYTHING can change in ANY given second.

“What good is ‘treating’ her with this stuff that is giving her fevers, nausea, horrible headaches and muscle pain, if this truck takes us out right now?” I had to ask myself on the car ride home, after her ER visit a few weeks ago.   It had just come flying over a blind hill at nearly 40 mph, the driver had no response time, (even as my time slowed palpably)  he hit a snow embankment head on in his attempt to avoid us. His truck nearly rolled over, a moment after impact, to land atop us, though miraculously didn’t. I just drove on by, like it was happening outside our sphere some how, still going 5 mph because the uneven dirt and snow packed road’s jostling effects were hurting Nyah’s weakened little body. Were she not in that state, due to the Chemo, I would have been driving faster… it surely would have been a deadly crash. But would we have been there at all if I hadn’t taken her to the ER because they worry that a fever could indicate a bacterial infection that could kill her?

I mused simultaneously over the potential loss of mine and my girls lives, as I watched the grins spreading over the 4 teenaged boys faces, at the incredulousness of the near death, raucous adventure they were having. I nearly laughed as I began to cry, feeling amiable toward their unrestrained youth, reminiscent of my own, and a trifle jealous of the obvious careless abandon to which they are privy. Such a strange awakening…. a very tangible sort of reminder that though we feel invested and attached to every little thing, that each decision is weighted sum how on a grand scale, it ultimately may mean nothing at all.  Life is so fragile. Funny I would feel  “tangible” about something that confirms for me how illusory this idea of existence is, though it doesn’t feel any less real.

So for this bleep in the time space continuum, I have given myself a little time off of scrutinizing so harshly each decision I have had to make.

So, thanks guys, I’m glad I’m still here to thank you…. :)



2 responses

  1. I found you through a friend sharing on fb. I just wanted to let you know I’m praying for your family and for Nyah. I don’t know what you may or may not have tried, but I wanted to refer you to Susan Silberstein has been successfully working with people since 1979. You may want to call them. And look into juicing very seriously-if for nothing other than to support her body through the chemo.

  2. It is confusing to me, as well, that we KNOW we can manifest the things we want to have happen in our lives, yet life seems to have surprises waiting for us. Things that we don’t see coming. Are we being taught we are not and can not be in control of all that happens to and around us? It is my opinion that in spite of the surprises, we do have the ‘power’ (not the best word) or better, ability to make the very best of any situation and it’s a good reminder to “live on purpose”.

    I personally see nothing wrong with responding to life’s surprises with tears of sorrow and/or desperation. It gives us the chance to slow down and see things in a different light. EVERY experience we encounter is exactly as it should be. We know that! Now it’s up to us to learn (or remember) what we are to do with the circumstances handed us. You have been instrumental in teaching me these very concepts.

    You, Syd, do an incredible job of selflessly caring for those in your charge…they are such lucky girls to have you as their Mom! You allow them all the room they need to be exactly who they are, without judging or controlling them. My hat is off to you!

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