The Rise and Fall to say when.

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This is Adler at age 3 rockin’ his favorite shirt.  Yep, Adler loved and still loves David Bowie.  He loved him so much so we began to paint his toe nails all different colors often because he said “mommy, he wears make up, why can’t I?”  So we opted for painting his toe nails.  He had purple, silver, gold, black, grey, you name it.  We even did his finger nails a few times.  He doesn’t look like he is in pain here either.  It was merely just the beginning.  Not only the beginning of his diseases but the beginning of our new life.

I say that because it’s true.  They say you need to find your new normal.  Or you can go back to normal when treatment starts and ends.  Well, that’s just not the case.  New normal consisted of  debilitating pain and misdiagnosis and then correct diagnosis and treatment and that all lasted 2 years.  All of that.  So we cannot just simply go back to normal.  Nor can we create a new one because honestly, real talk here, I don’t know what that is??  Our life is merely what it is.  We live day to day and never know what that day may bring.  We don’t.  What we have learned through this journey is to hope for the best and expect the worst and brace ourselves for the in between and love and appreciate every single GOOD moment.  Because in an instant it can go to shit.

David Bowie died this week at age 69 from cancer.  Adler’s favorite artist died from the same thing he is battling.  I couldn’t tell him that part.  I left it out when I told him of his passing.  He got teary and said “well, people come and people go”.  And that was that.  Today the actor Alan Rickman died at age 69 from cancer as well.  And last night as my phone dinged to let me know I had a Facebook notification, I pulled it up and read that one of my cancer mom friend’s daughter with the same cancer as Adler, the same age as Adler, the same treatment as Adler and the same beginning time and end of treatment pretty much got results of her MRI and the tumor showed new growth.  She barely got any time off of chemo before she has to start another round of another kind.  We chatted back and forth and I offered my anything and everything to her.  It is the least I can do while we go through this journey is to be there for those mommy’s. I recently became friends with a mommy who’s daughter at age 8 is beginning her treatment against brain cancer and I offer anything I can in the way of advice when she asks.  Just my two cents but if they can amount to more, I have to try to help.  My dear friends father is losing his battle as I type and she is home to help with his end of life care and we are meeting for lunch today as I want to be there for her too.  It just fucking sucks.

I hate cancer.  I hate it so much.  It is deafening and all consuming and surrounding and devastating lives daily.  Minutes even.  There is no handbook for life, nor is there one for when it turns upside down because of illness.  No where to look or turn other than inside yourself.  You can lean on your family and friends if you need them and the docs and nurses and other that help heal but at the end of the day when its quiet and the night has come and the moon is high in the sky pouring it’s light down upon this earth, I sit and think about our journey and how hard it’s been and how some are just beginning theirs and how some have lost that fight.   It is in fact an awful feeling.  One you will not understand until you are directly effected by it.  It hurts.

I am speaking from my own experience here.  I know cancer doesn’t choose age or race or religion but cancer leaves a permanent wound.  One that’s covered by emotional band aides and often times those are ripped off exposing those wounds.  And the worst part as a parent of a child with cancer is that you just have to watch it all.  You have to be a witness to their little lives being wounded as well.  It is something I wasn’t ready for.  I didn’t know I would have to face.  I never thought we would have to deal with this.  And I didn’t have a clue how many kids and people have cancer until my daily news feed on my phone is just filled with it now because I am a cancer mom and follow tons of pages and use social media as an outlet for myself and for Adler’s own page and to stay connected to the outside world as I often felt trapped in the pain prison and cancer coma that we have come out of recently.

The fact is 46 children will be diagnosed a day and 7 will die a day due to childhood cancers.  And there are SO many kinds.  It is NOT rare.  It is becoming an epidemic and I know with social media now we are able to see it right at our finger tips but I never knew.  I was blind to that statistic.  Sure I would see the St. Jude commercials and feel sorry for those little bald kiddos sitting in the hospital beds but now my son is one of those kids just at a different hospital.  I mean what the fuck??  Oh the how’s and why’s run through your brain until you are damn near insane and the therapist literally says to me “its a wonder you aren’t more fucked up than you are”.  Yes, she really said that and she’s right!!  It is a wonder that us mommy’s and daddies make it out alive especially if our children don’t. An ever existing fear of our own.

Sometimes it really is just so heavy and so much to bare that you have to lay it down and just breathe.  Just look around and refocus your gaze upon something other than cancer.  Something, anything!!  You can cry and scream and be full of hate and anger but that doesn’t do much good for very long so you allow that feeling to arise, deal with it and move on.  You can feel it, and you should.  And remember you are fragile and be gentle on yourself no matter what stage of the journey you are on.  Positive thoughts may elude you on most days but smiles don’t.  Say good morning to those kids at school and their parents and feel the energy around you and them.  I love walking Adler into school every morning.  His energy and all those kids giggling and bustling about make me happy too.  A cancer mommy I know says “find joy and happiness” and yea, that’s not always easy but if you can and want to, it’s there.  Even in the midst of death daily and pictures of those gone and those that will be and those that have beat the monster…..seek it out.  Even when you don’t want to.  A text, a phone call, a message, an email something from someone may brighten your day or YOU may brighten theirs.  Just try,  you have to.  Even if it’s just opening your shades and seeing the sun burst upon the world as it rises and you are there to see it.

I can’t say how I feel sometimes because during this journey you become numb to so many things.  You don’t switch it off completely like those deliciously hot vampires on TV can do but you can go on auto pilot.  I have done it and still do sometimes.  You just go through the motions, go through the paces.  Swimmers count their strokes and I count my steps in the dark to Adler’s room…..unless there’s vomiting involved then it’s a sprint!!  I have told other’s this fact and said just wait for it, it will happen.  It will sadly become routine coming and going from the hospital and you will sink into a “norm” at home too.  Ships passing in the night kinda thing.  And when those faces pop up of those who have left this earth it will also become normal.  Its a club we didn’t want to join but we are member’s of the cancer club.  So get your cards ready at the door or polish that signature for the check cause it’s all part of it.  Puzzle pieces that fit now that you never expected to be in your life.  And if I can help put those together for others, I will.  It’s the brighter side, if there is one.  I cannot help but let my mind lose and day dream of things and places I would rather be again, coping and using distractions are necessary tools in this fight.  Adler used bubbles and music when his pain was off the charts.  I would dive into sexy novels to heat up my cold core and movies and music again to help ease my worried mind.  Again, all part of the journey.

So when and where does it end??  That is the unknown question of the day, the week and the month and now years.  I sigh as I type that and look up at my red lave light and peak out the open curtain in my kitchen window and breathe deeply and think of it…..and there is hope and happiness even when it’s frozen.  The journey may never end but if I can make some headway and do some good along the way and keep us going then sail on we will until we find that shore that we can plant our feet on that sandy beach and say when….cause when you have had enough you say when.

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