Steps

Today is Sept 19, 2018.   The news is not good.  It is not working anymore.  Not even small baby steps.  No more steps forward.  But I am planting my feet firmly on the ground, digging my heels in, refusing to be pulled back.   With every ounce of strength I have I am resisting because I know once I take that first step back I’ll get pulled harder & stronger until it pulls me down - unable to get up again.   I am running out of options.   It is an odd feeling.  I don’t really know how to describe it.  On one hand, I look no different.  I continue to eat, talk, & laugh with you.  I am here and I am present.  We are planning for all things we will do & places we will go.  And on the other hand, these people, the experts, the tests, the words in black and white, tell a different story.  I’m uncertain how I should be feeling right now.  I guess I feel...uncertain.

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Sometimes I write things down and I don’t post it.  Sometimes I forget about it.  Sometimes it’s unfinished.  And sometimes I just don’t feel like it’s the right ‘time’.

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March 23, 2018

Here I am again. A familiar spot. This spot is called “Two steps back”.  As in “One step forward two steps back”.  I was hoping the new team, the new environment, and the fresh minds would give me another chance - or at least a little more time.  But it’s all the same.  A repetition of what the last 3 years have been.  What to do now?  Continue to cling and claw until my fingers and hands are bloodied & numb (quite literally in fact) to an almost non-existent hope?  Or do I resolve that we did our best, the most that we could do and that the outcome was already written at the onset and that it’s finally time to come to terms with it.  To prepare for it.  To accept it.  My mind says yes but my heart cries out ‘No’.

Y.C.

January 12, 2018

I’m tired.  I’m tired of being tired.  I’m tired of telling my children that “I’m tired.  Be quiet.  Let me rest.”   I want to run.  I want build snowmen and snow forts.  I want to climb.  I want to swim.  I want to jump.  I want to laugh hard.  Really really hard.  I want to feel.  Feel anything except being tired.

I just realized M3 is now the same age that M2 was when I was first diagnosed.  M3 seems so young. I can’t imagine what was going on inside M2’s mind 4 years ago.  How my little girl had to grow up so fast during those first few months.  These past 4 years have been a blur - with only the worst days imprinted in my memory.

A few weeks ago I was certain of how 2018 would start.  It didn’t turn out exactly as how I imagined, which isn’t a bad thing, but now I keep thinking about how the next few months will unfold.  I keep reminding myself not to think too far ahead.

Y.C.

August 14, 2017

The best kind of friends are old friends.
I don't need to make small talk.
Silence is not awkward but comfortable.
Some of my most intimate thoughts & feelings are shared with these people.

I spent time with some of my dearest friends this evening. It was filled with laughs and memories of our younger years, & stories of our children & family today.  We talk about our futures in the context of our children a lot - what we hope to teach them in life, what we hope they'll become. I also felt a hint of sadness. I am sad because these nights for me are few & far between and I'm not sure when the next time will be.

I have played out in my mind who I'd want to see when the time comes.  This group of friends have always been included in my thoughts.  What would I say to them? Would it be like tonight, reminiscing, nostalgic, laughter, comfortable silence?  I certainly hope so.

Y.C.