Thursday, September 17, 2020

It Should Have Been Me

On August 11, 2010, it should have been me.  It should have been my headache, my MRI, my cancer. I was almost 35-years-old and, up until that point, I had lived life to the fullest. I was as carefree as I was careless. Money burned a hole in my pocket, I traveled often, I loved concerts, I beached it in the summer and snowboarded in the winter, I ate whatever I wanted, I smoked cigarettes (and weed), and aside from pregnancy, I probably hadn't gone one weekend without drinking since I turned 21.  I loved life and I enjoyed the shit out of it.  

Well, there's some honesty I haven't yet shared on this blog! Sorry to those I offend, but this was never a place where I downplay the truth.

I was married to my best friend, I was a new mom to two healthy boys, and I had seen very little loss in my life thus far. My heart was the fullest it will ever be because no matter how much new love may enter my life, the part of my heart that left with Ty can never be replenished.  Once a gaping hole, now a slow perpetual bleed. 

But I only know that now - in hindsight.  If it were me at the time... if I had been diagnosed with a deadly brain tumor at 35-years-old, I would have thought, "What will my boys do without me? I'm too young! I need to see them grow up! I have so much more living to do! Why me?!?!?"  Rightfully so.  But had I been given the choice between me or him - it should have been me. Any parent in my shoes would say the same. I lived enough, and I wanted my two-year-old son to have that same chance and more.

And it's not just the life experiences he'll never have. It's the unimaginable pain he endured for half of his life. It should have been me!  I look at Bodhi, I listen to him play, and I try to imagine what it's like inside a little 3-year-old mind when he has to go to the hospital every day for chemotherapy; when he loses his ability to walk, throws up daily, wakes up from anesthesia to find a tube in his stomach, or worse, wakes up intubated after brain surgery. And so much more. Terrible, horrible things happened to him on a daily basis, I have to stop myself from thinking about it because it nauseates me.

There is no bargaining in life. You can't trade wealth for health, or one life for another.  There are no "do-overs." I begged and pleaded with God.  I asked the Universe. Still, here I am - here he is not.

There is a lot of pressure that comes with knowing it should have been me. I am here, I am healthy, and I have to try my best to be a good human. Many days I fail, but then I read the news or glance at Twitter and pat myself on the back because at least I'm trying. This world is a trash heap and we can do better than this, can't we!?! 

When our fundraising efforts fall short, I feel like I'm failing. I beat myself up every time I think our nonprofit isn't growing fast enough, or that the research we invest in isn't saving enough children. I meet families with kids in treatment almost every single day, and it never gets easier knowing the difficult path that lies ahead of them.  

Bad things are happening every day - really, really bad things. Nothing makes sense. This life is hard. But I do find some comfort in getting older, I guess.  I like the wisdom and the sense of calm that is starting to come with it.  

For years, I had truly forgotten what it felt like to be happy.  I continued to travel and entertain, but it was to escape life, not to embrace it. About a year ago, I was making my bed and for no reason whatsoever I was humming and smiling as I snapped the sheet. I caught myself and I thought, "Oh my God, I am happy!" I barely recognized the feeling, so spontaneous and unexpected. I wasn't chasing after it with vacations, birthday parties, fundraisers or social gatherings.  It just found me again, in the form of sunbeams through my windows and the smell of fresh linens. How simple. How lovely.

I can't wait to see Ty, but until then I have a lot to do. I have to make sure Gavin and Bodhi grow to be men who work hard, respect others, and fight for what's right. I have to do my part to help preserve this beautiful planet. I have to keep advocating for children with cancer. I know I am relentless (borderline unbearable), but I have to keep fundraising for research. Can you believe we have already funded 13 innovative projects for kids with brain tumors, sarcoma and relapsed leukemia?  All research projects, and every researcher working in the field, are advancing the science toward cures. And, without Ty's loss and our nonprofit in his memory, there would be 13 fewer such advances.  That means so very much.  When I die, I hope I die knowing that I did my best to honor Ty's memory and to drive change.  

It should have been me, but it wasn't.  So I am trying hard to make sure that if I have to live without him, I live with purpose.  And however you may have supported that purpose, whether attending events, convincing your friends to join you, fundraising, making donations, volunteering, jumping in muddy puddles to raise awareness, or sending words of encouragement to my family or others like us, those actions have purpose and together we are making an impact.  I thank you.  

True Love. Photo Credit: Janice McCreay

September is Childhood Cancer Awareness Month - pass it on. 

6 comments:

  1. Perfectly and eloquently said. I hate that we share the reality of losing a child, but I am so grateful that our paths crossed and we can each pursue doing better for other children. You are a great mom and I am proud to know you and join with you in the battle. ������

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    1. Happiness is what i witness now after a long period of separation of me and my wife and my daughter for over 8month now,my wife caught me with another another lady and she was angry that i cheated on her and she decided to leave with my daughter away from me, ever since it dawn on me that i have fails my marriage. but still yet i never loose hope i searched around from every angle and every place and finally i saw a blog comment on the way DR JATTO has helped a broken home. i ran to him and asked for his help and told him that my situation is not permanent but temporary that was how he cast a love spell for me and in 24hours my wife and daughter called me that they are coming back home that that they are sorry for leaving me. i was bewildered. but since then and until now we are a happy family with no quarrels and the lust for other lady died immediately. contact Dr JATTO for his powerful spell and he will surely help you okay. on his email:drjattolovespellteple@gmail.com or drjattolovespelltemple@yahoo.co.uk or his website:http://drjattolovespellte.wixsite.com/spelltempl or his Mobile:+2347050270268...

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  2. Thank you for sharing this❤ sending lots of love❤

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  3. It made me so beyond sad to read how you believe you fail at being a good human. You're an absolutely amazing person, mother, advocate, etc. Please never doubt this. I have said it before and I will say it again, if I could be 10% of the woman/mother/person you are, I will be incredible. You continue to fight even though it was too late for Ty. This speaks volumes to your character and your heart!

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  4. You are absolutely brilliant and incredibly talented. You amaze me. Love Colleen

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  5. You are an amazing person and a talented writer. Thank you for sharing!

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