Life Unraveled By Childhood Cancer

Life Unraveled By Childhood Cancer

September is Childhood Cancer Awareness month, so I’d be remiss to not address the elephant in the room!  I’d have my cancer mom card revoked if I didn’t use my platform to bring some attention to this evil.  The problem is, what angle do I use?

Do I throw statistics at you?

Do I tell you that 96% of Federal funding for research is for adult cancers, leaving only 4% for children?

Do I inform you that less than 1% of donations made to the American Cancer Society go to childhood cancers?

LESS THAN 1%!  Let that sink in!

Do I educate you on the fact that 98% of childhood cancer survivors  suffer from chronic health problems as a result of their cancer treatments?

Yep!  They survive cancer only to have other potentially fatal diseases or lifelong health problems like pulmonary and cardiac issues.

Should I explain that most funding for childhood cancer research comes from the children and their families starting their own fundraisers because they get tired of hearing the dismissal statistics?

That’s right the families that are in dire financial situations because of cancer are the very people donating their own time and money to the cause!

I could explain that you may not think it pertains to you, but 1  in 300 children are diagnosed before they turn 20.

Do me a favor and look at your Facebook friend list.  Most of us have over 300 friends on that list. Most of those friends have kids.  This statistic tells us there’s a pretty good chance that you or at least one person on your friends list either already has a child with cancer, a child who beat cancer,  a child who succumbed to cancer OR they will have one of the above.

Rather than bombard you with a lengthy post you forget the moment you’re done reading it, I’m going to take the angle that hopefully stays with you long after you’ve closed this page.

Having a child feels like birthing an extension of your being.  The moment you become a mother you learn what it feels like to live with your heart on the outside of your body.  The depth of your love extends like an invisible thread from you to your child much like the cord that connected you for months.  Your body kept this child alive.  Allowed him or her to grow.   To develop.  To exist.  And once they leave your womb, this connection doesn’t disappear.

Although an adopted child or a step child may not come from your body, I imagine the connection is just as strong.  Just as it is for fathers.  These people may not physically bring the child into the world, but they are born from their hearts just the same.  It’s as if the word parent in any capacity equates to a bond to another human that can never be severed.

When you find out your child has cancer it feels like being sucked into a black hole. All the oxygen leaves your lungs, the room, the world.  You immediately feel like you’re living in an alternate universe where everything is foreign.

Nothing makes sense anymore.

Your mind can’t keep up with the immense amount of information being thrown at you.  The quick manner you’re required to make decisions despite not understanding anything going on is unnerving. The images of what life is going to be like every day with doctors, tests, and surgeries start to present themselves.

Then the reality that your child may not be here in an hour, a day, a month, a year starts to set in and you realize the images you were just conjuring may never happen.

Having a child with cancer means no longer having a child.  A child implies being playful, silly, full of energy, and full of life. A child with cancer knows pain and suffering.  Being bedridden.  Being scared.  A child with cancer faces death on a daily basis.  They becomes a spectator to the other children who get to be all the things they want to be or use to be before their diagnosis.  Their childhoods end prematurely as they wither away, as they endure, and as they fight.

Being a parent to this child means holding the child down while they’re poked over and over again.  It means when you aren’t the one holding them down, you get to look in their eyes as the plead with you to make it stop. It means knowing their veins will be blown from so many pokes, thus requiring needles in places like feet, necks, and heads.  It means handing your child over repeatedly and trusting those taking care of them are making them feel safe and secure.  It means not knowing if the goodbye before surgery is your final goodbye.

Before they’re rolled away you memorize every aspect of their face.

Then you memorize their smell, just in case it’s taken away too soon.

Having a child with cancer feels like living in a rip tide.  You keep swimming and swimming trying to get closer to shore, just to get sucked into the abyss again.  You get pounded into the sand.  You get pulled under by the waves.  You get twisted around so much you have no idea which way is up.  But no matter what happens, you keep swimming.  You try repeatedly to keep your head above water.  To avoid drowning. You know you need to get to the safety of shore but you’re exhausted.  So tired it would be easier to just sink.  However, you pump your arms and kick your legs as hard as you can all while the rip tide keeps pulling you further and further away.

Having a child with cancer means pleading with God every night to let you trade places, then waking up every morning questioning if he’s listening at all.  It means getting so use to the sound of a ventilator it becomes white noise.  A soothing hum that’s comforting like the arms of a friend, because as long as it hums they’re alive.  It means losing friends who can’t deal with your pain or your new life.  It means making new friends with other cancer moms and then feeling guilty when your child lives and theirs doesn’t or resenting them if the reverse is true.

It’s unimaginable pain and heartache that imprints on your soul and never leaves no matter how much time passes.  It’s been twenty years that we’ve been lucky enough to have Tristan with us, but every cough that lingers, every bout of flu, and every cluster of headaches makes my heart sink.  There’s always that little piece of me waiting to be sucked into the black hole again.

Childhood cancer is still present even if you’re child becomes an adult.  For Tristan it’s been years and years of Addison’s Disease, a lifetime of autism, motor processing problems, attention and focus issues, mood swings, anxiety, depression, OCD, migraines, chronic constipation, a speech disorder, no depth perception, strabismus, adrenal surgery, lung surgery, and two eye surgeries.  Most people think once the cancer is gone life resumes as normal.

That couldn’t be further from the truth.

Having a child with cancer is sitting on the edge of their bed watching their chest move up and down while they sleep.  Willing them to keep breathing.  Wiping their tears while holding yours in. It’s fearing your cancer kid is living on borrowed time and being petrified that your other children aren’t safe either.  It feels like swallowing a thousand razor blades and having every inch of you sliced as they pass through your body.

Childhood cancer feels like the unraveling of your life thread by thread.

Minute by minute.

Hour by hour.

Day by day.

And no matter what happens or how much time passes, you can never rewind the thread.  You can never rewind life back to the bliss and innocence of before.

 

 

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3 thoughts on “Life Unraveled By Childhood Cancer

  1. I don’t even have words to even compare my situation with yours but I do understand that no matter what we face and every situation that comes upon us I feel the same way like your heart is just ripped from your chest and me feeling like the “bad parent”! God love these kids indefinitely and keep them safe!!

  2. SO well described, Buffy..I especially relate to the panic of having to make rushed medical decisions for your child when you, yourself are in a state of shock.
    I remember feeling like I’d just been in a car crash, but was being asked to pull myself out of the wreckage, walk over to a chalboard and do complicated math equations I didn’t even have the formulas for…oh, and casual…my child’s LIFE depended on me getting all the answers right!
    In the early days of diagnosis you feel truly powerless but in the days that follow, as you know…a warrior advocate emerges within that you didn’t even know existed. I imagine that most parents/grandparents of children facing ANY challenge, meet that advocate within, as well.
    Our lives are irrevocably changed the day our kids come ‘under siege’ – and whatever path we WERE walking on before, shifts beneath our feet to an uneven, unfamiliar one with an unknown destination.
    If we’re lucky, we meet other warriors along the path who help us find our way. 💛

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