A shrouded superhero….


This picture was taken the night we found out Adler had cancer.  I had finally cried out all my tears for that time.  Walked to my parents apartment and taken a shower and tried to lose myself in the hustle of the city sidewalks, but all it did was amplify my sorrow.  I remember my tears mixing with the shampoo as I washed my hair and I stood under the stream watching them go down the drain.  Telling myself “you can’t lose your shit”  “keep it together”.  It’s amazing that I still tell myself the same thing all these months later.  Even when I do have days that I am down, I only allow myself to be down for so long and then that voice from the other room says “Mom” and I blow my nose, wipe the last tear and go back into the room to tend to his needs.

Today is one of those days.  It’s rainy and gloomy and I feel very much the same.  I know it’s due to Adler resuming chemo this week.  Back at it again after almost 3 weeks off.  Thankfully and scarily it is his final cycle.  The last 4 infusions of chemo for our Adler Bear.  Wow……that equals 14 months of chemo.  Our son has been injected with poison to kill his cancer once a week now for 13 months.  I have cried, yelled, screamed and hated because of it.  But, I have also laughed, grew stronger, healthier and braver than I knew I could.  Love has been felt from all over the world as I set up his Facebook page and it grew and grew with prayer warriors and followers that love and adore him just as I do.

I have also learned the things that are ok to hear and not to hear.  One is “you’ve got this”  I know people mean well when they say it, but it bugs me.  NO, he got it and now we are managing life because of it.  And “God doesn’t give you more than you can handle”  Of well, fuck that!!  Some human that couldn’t handle it made that up to get through their shit.  And last but not least, “God only gives special problems to special people” REALLY…….God didn’t give Adler cancer and I know that.  It doesn’t discriminate AT ALL.  It takes who ever it wants whenever it wants.  No matter race, gender or age.  Cancer is a mother fucker and I hate it.  I despise it for the lives it has taken.  All those children that I see on social media battling and losing that battle.  And those that are battling and winning but will have lasting effects from chemo and radiation and all the other million emotional issues it causes the patient and their families.  Its a group diagnosis and felt by those closest to them.  IT IS NOT EASY.  And money doesn’t matter either.  I have heard that one too as people think that we don’t need help because I have a successful father who owns his own companies.  And one isn’t worse than the other or better.  That drives me nuts too!  How dare anyone say that “well it could be worse”.  Um, wow.  I have learned to be thick skinned with peoples comments and outlook towards cancer and our child having it.  Hell, I have been told I am killing Adler with chemo and morphine, by some sad coward that left a message to me on his page.  I told her my address and told her we could have formal chat about it if she’d like.  She didn’t show. I have offended people in public with my Fuck Cancer shirts and I don’t care because it offends me that 46 children are diagnosed a day 7 die a day from childhood cancers and that Adler is on 20+ year old chemo because there is only 4% funding for childhood cancer.  That is offensive.  I try to keep my rants to myself but sometimes I am unable to keep my tongue and it comes out.

But, I had a good friend of mine give me the most amazing compliment I believe I have ever received.  He said that I have handle this with grace.  That I am graceful with it all.  I will hold onto that one for a long time.  Many people have used the term “bat shit crazy” and wondered how I haven’t gone there.  Well, not saying I haven’t I just am not public with it.  I have my bad days.  My down days.  I see a therapist whom I love and adore every other week and I take Xanax daily to maintain anxiety and sleep.  I also have learned to breathe……just breathe.   And allow my feelings to come when they want.  Pushing them down will just make it hurt that much more when they come out.  Life can suck enough sometimes with out the diseases and PAIN that Adler has.  But there is a light in him that keeps my light from going out too.  He hasn’t given up or given in so why would I?  It just isn’t an option.  I cannot.  I have also become sober and lost weight.  Healthier living seems to be a fantastic option even with my feelings of disconnect and uneasiness that I didn’t realize would be caused by choosing this lifestyle. And communication is key even when it’s tainted by the everyday.

Even as the captain of this ship I have those feelings.  I have adapted to my surroundings.  Followed Darwin’s chart of evolution and found a way to keep going even with tear soaked cheeks and broken pieces shattered at my feet, I keep walking.  Because I have to.  I will not falter on this journey this voyage.  I will get us to land someday damn it and I will scream with victory one day…..he may never be cancer free.  He will always have hydrocephalus and possibly adrenal insufficiency but he’s in school now and living a half way normal life.  Pain and all he’s on that playground just like everyone else.  He has made a friend and LOVES school.  I was worried he would be abnormal or weird but he’s not.  He’s doing just fine.  So I remind myself of that too, he is doing just fine.  Day by day, we are doing our best, doing what it takes, making it work.  Just keep going.

And when I just sit and breathe and day dream away the minutes or allow my thoughts to be drowned out by those of a best selling author or a self help book I borrowed from my other good friend who stands by my side.  Or those text from those couple of girls that mean the world to me…..it’s the little things that heal and make the tears worth it when the do fall because they don’t go unheard when family is near.  And hugs are great!!!

Many people call Adler a super hero and me as well and I am honored to have them call me that even when it is shrouded in depression and anxiety to be clinical about it.  But love and family and friends are at the core here and that’s where it’s at.  Super heroes all have weaknesses and a nemesis and I too have mine.  But we stand firm, Bold As Love and we waged war the day this picture was taken.  I boarded my ship and set sail with hope as our wind and music on deck and through the lightning and the waves we sailed.  And in the words of Jack Sparrow “Now bring me that horizon”!!


One thought on “A shrouded superhero….

  1. I love your family so much. You are all superheros to me. Yall make me smile when you want to and I have cried for you. I will follow Adler for all of my days and support your every decision for him because I have the utmost respect for you! Love and prayers. Billie


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