Chronic Pain · parents perspective · Uncategorized · written by dad

Chronic Pain Kid – A Parent’s Perspective

I asked my dad to write a blogpost. I told him to write whatever he wanted. As always, it turned out amazing and I will now share it with you! Love you dad!

 

As a parent, our job is quite simple and yet so complex.   We are entrusted with the nurturing of a young life, with the responsibility to protect that life from all manner of attacks and help develop that life to its full potential.   We must deal with numerous outside opinions and influences from the start, from pacifiers to car seats from cloth to disposable diapers.   Every decision seems so important to fulfilling our promise of caring for our child and, especially with the first child, every decision is debated, analyzed and cloaked in the veil of having an indelible impact on the entirety of her future.   Somehow, we get through it all. The sleepless nights, the colds, coughs, scraped knees and hurt feelings.   Our child grows and develops her personality each and every day.   Your hopes and dreams for her future are reshaped and start to morph into her hopes and dreams. They become shared as you work together to build a base of knowledge, values and experiences from which to launch those hopes and dreams into orbit and begin turning them into achievable goals and objectives.   They take on even more importance as they become concrete and plans are made to realize them. They now become real, true attainable possibilities. All the hard work, sweat and tears are ready to pay off.   You and your child have completed one part of the journey and stand at the doorstep of another. You feel proud of your child for all she has accomplished, confident in the strong base you have provided yet anxious to see how she continues to develop into a young woman, capable of taking on the world and beating it.

The view from that place was beautiful.   The challenges, real and perceived, of the past had been vanquished giving you and she the confidence that future challenges would be as well.

Then one day it all changes. Gradually at first, “surely this is just a temporary detour”.   You do as you have in the past.   You commit to protecting your child and finding those that can identify the problem and solve it.   Then it deepens as you trudge to more and more appointments. More and more specialists, none of which can provide any sense of certainty and only a few that even attempt to give any hope that you can change the current course, get the plans back on track and rejoin the original journey. Then it happens.   You are finally faced with the one word that appears like the least favorite card in Monopoly, “Go Directly to Jail, Do not pass go. Do not collect $200.”   The only difference is that in Monopoly, you have a chance to roll doubles and if you can’t do that, you can pay to be released and return to your journey, albeit a bit behind, but with the opportunity to catch up and even excel.

CHRONIC   Long Lasting – Constantly Recurring – Difficult to Eradicate

No chance to roll doubles. No amount of money can make it go away.   Obviously, this isn’t the worst word you can hear.   Terminal, for one, strikes the ultimate fear in the hearts of loved ones and those that face that diagnosis and my heart and prayers go out to anyone in that situation.   However, the most significant difference is that Chronic when used in conjunction with any medical term basically means, “We don’t know”. It means that there isn’t a path; well-defined, rustic, overgrown or otherwise, to take that will provide any measure of comfort that you are working toward a solution.   As humans, we are somewhat programmed to want to make things better, to fix things that are broken.   While our world is trending toward planned obsolescence and things that are broken are simply discarded and replaced with a newer, faster, sleeker model, thankfully, that isn’t yet the case with most human life.   The problem is that when “chronic” creeps in, there isn’t a fix.

When my wife was diagnosed with cancer at 24, there was a possible fix.   When I followed her example 18 years later by contracting colon cancer, the fix was more invasive and less certain, but it was there. A few years later, when a brain tumor tried to rob me of the mother of my children and love of my life a second time, again, there was a fix and a wonderful doctor that could provide no guarantees but a path that if we followed was likely to yield positive results.   In every one of these situations, we were faced with the very real possibility of tremendous physical pain, mental anguish and catastrophic loss. We were able to face these head on, implement the plan placed before us with the help of tremendous professionals and commit to overcoming a known but formidable foe.

This time there would be no plan, no professional help that had overcome this unknown foe before you.   That is when you become:

HOPELESS and HELPLESS

Hope is the engine that drives us forward

The thought that our tomorrow will be better than our today

Help is the glue that binds us together

The coming together for a common cause that shows our humanity

Less on its own is simply not as much

A way of illustrating quantity or value

Why then when we pair them does it make such a monumental shift?

Hopeless is devoid of all hope

Helpless is completely without help.

Normally full of hope and willing to help,

Tonight we find ourselves at the corner of hopeless and helpless

Hopeless because every road seems a dead end

Helpless because those in a position to provide assistance remain aloof

They stand on the side in disbelief as the stories are told

Of trials and tribulations, of pain and suffering

They lack a fundamental understanding of the paths that have been walked

They possess a bias that colors their thoughts and actions and stand in the way of finding a solution

It is a dark corner on which we stand

Lonely, tired, broken and wasted

So much hope to share, so much help to give

All laid to waste at this intersection

A once bright light reduced to barely a flicker

God, help us understand why this path has led us here

We trust you have a reason, a plan.

Please help us to find our way off this dark corner and back into your light.

 

At that dark corner, you are forced to choose.   Do you simply give in or do you face the challenge head on?   You search your heart, your soul, your faith and your bank account.   Then, as you are facing what seems to be an insurmountable challenge, you realize, “We have done this before!!”   You look back and realize that while there were plenty of opinions and influencers, YOU raised that child, YOU provided the structure and values that shaped her life, YOU were the one that stayed up with her at night, YOU were the one that wiped her nose and tears away, YOU were the one bandaged those scraped knees and hurt feelings.   YOU are strong, YOU are capable and YOU can and MUST do this!! If it is meant to be, it is up to YOU!!   Failure is not an option. There will be no white flags of surrender. You will battle this foe on its terms and leave no stone unturned to find a way if not to overcome the foe, but to marginalize it in such a way to allow you and your child to live a meaningful, productive life.   Those hopes and dreams that together you turned into goals and objectives and she built into attainable possibilities get adjusted or delayed while you now stand together at the doorstep of a journey with a less certain vision. One that requires more strength, more diligence and more intestinal fortitude than you previously thought imaginable.   You take your loved ones by the hand, ask God for guidance and strength, strap on your mental armor, reach for the handle, turn it and open the door to an amazing journey.   One you never anticipated. One that will test your faith, your heart, your strength and your sanity, but one that will also define your character, deepen your relationships and forge bonds that will never be broken.

 

 

One thought on “Chronic Pain Kid – A Parent’s Perspective

  1. Wow, this made me cry and question myself as a parent, “could I have gone through this with so much dignity, strength and belief?” Madi is lucky for the parents she has and of course you are lucky for this very special daughter with so much strength and courage. I am in complete awe. God bless you all and I will continue to pray for a cure soon.

    Like

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