Wednesday, February 3, 2010
I've tried. Really I have.
I think I was on a roll there for awhile.Posting about everyday,mundane,dare I say,normal stuff.Sharing the little miracles that really equate to some truly large,awesome looking miracles.My girl,knocking out the signs like they were nothing.Building her "vocabulary" daily.This week alone she added "happy","sorry","shower" and few others that escape me at the moment,as well as tonight,blowing us away with name signs for two of her therapists,that we didn't even see coming.I have tried to tell cute,quirky stories about my other little wonders and update on the goings on of the older crew and still try,try as I might,I just can't dance around the elephant in the room.You know that 6 letter bad word.That, "everyone's worst nightmare".... it's still here,suffocating me.You know the word I'm talking about.Some of you are actually probably sick of hearing about it but I'll utter it anyhow,much to my and possibly others, dismay,once again we circle back to .... cancer.
That word and the journey with it and through it,defines such a large portion of who I have become.I am immensely proud of that badge I wear:a mom to a child with cancer,truly I am.I walk into the store,a coffee shop ,a restaurant,a classroom and I want to tell everyone and anyone who will listen, about my fighter girl.I want to share the blessings and the beauty and dispel the fear that is instilled upon hearing that 6 letter word.I want to speak of my daughters fellow warriors and their families.I WANT to spread HOPE.I truly do.But the last few days have tested my resolve.The past few days have tested my determination to not allow this disease to rob me of another piece of myself that I have worked so desperately to reclaim.
Thursday night was a date night with sweet Madison.Friday night we went to a nearby parks grand opening with Madison and her mom Julie.Monday we had our beautiful former roommate Jayden and her family over for dinner.Monday night I learned of Christopher's relapse.Monday night I sent a text telling my good friend Laura, I was thinking about her.That day had marked the year anniversary of the passing of her beautiful boy Luke.Tuesday,I spent 4 amazing hours with my dear friend Tish.Mom to Angel Thomas.Do you see a pattern here?This is my life and honestly,I wouldn't change it.Only if it meant bringing back these precious kids and lightening the load of these children still fighting.Then,and only then,would I change it.My life is richer,fuller and more beautiful because of the presence of these people in my life.But on some days it is heartbreaking.No other word for it.
My struggle continues to be balancing the sadness and grief with the faith and the understanding of that which I cannot control.Balancing reentry to the world outside my front door.All this,coupled in some brief moments,with real honest to goodness fear of the uncertainty for my very own child.I say however,unequivocally,that I spend very little time pondering the what if's of Zoey and her future against this disease.I do cherish each day and look to each moment with her, as a gift.But this morning I awoke and wanted to cancel all therapies.I wanted to say no to sharing our precious time with feeding therapy,OT,vision and speech. 3 hours of our day spent working the girl.I sometimes think she has worked hard enough in her little life.No offence to Zoey's amazing therapists.Who I love.Who are like family.But on days like this morning,I asked myself, what does it really matter?Zoey will find her way.She has already proven she is a master at that.Why can't we fill her days,our days,with long walks,days at the zoo,store outings,snuggling ... all the fun, no pressure stuff?Hasn't she earned a pass?Can't I just let my girl live and watch Sesame Street to her hearts delight?
For the record,I did not cancel one therapy session.My little love worked and worked hard and my heart knows,in the end, that canceling would have been a great disservice to her.I am an ever evolving work in progress.Constantly trying to find the middle ground.Continually working to get to a place that resembles a combination of the person I use to be and the person I am today.
I am trying.Really I am.I will continue to take baby steps forward but the last two days have pushed me back a few.Knocked me for a loop.I have some ground to recover.Some of those pieces are irretrievable however.No way around it.Just a casualty of this process.But bear with me please.Please see,that woven between the posts filled with great despair and profound sadness are threads of HOPE and FAITH.After all, those two words mean so much to me that I chose to have them inked,permanently, upon me....reminders of what our journey in this life ultimately is about.
Yep,those photos belong to me or rather are of me or rather that is my tattoo.On my wrist.For the last 8 months I have been waiting for what felt like the best time to share it.Not because I am ashamed,embarrassed or afraid of judgment,I have long since cared about any of that.Okay, that's a tiny lie.Recently,I was going to a wedding and I was going to be sitting at a table with a couple who are very refined and I did end up wearing a big honking bracelet that covered it a bit.Anyway,tonight, as I wrote FAITH and HOPE in the last paragraph,it dawned on me,now is the time.That tattoo might shock some,others who know me,not so much.To clarify,it is one tattoo but is an ambigram.Meaning, it says one thing when viewed in one direction and another thing when viewed in the opposite direction.I had toyed with having it done,for awhile.Months probably.Waiting,like I do on most things,for some divine sign.On Zoey's very last night inpatient, of her very last round of chemo,I was driving home and took a turn off the 101 North and did the deed.I have not regretted the decision for one moment since.Sure,I get looks.Even some of my closest friends aren't big fans of tattoos but they know it fits me and more importantly, they know it means something TO me.So there it is.A little known fact about me... hoping you love me all the same.