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The Rare Disease That Doesn’t Give a Crap

Ben has Hirschsprung’s Disease.  That means his colon didn’t form right which gave him severe constipation as an infant.

Hirschsprung’s is a rare disease which is more common in individuals with Down syndrome. It’s normally detected in the first week of life, but that wasn’t the case for Ben. He lived 15 months undiagnosed, and by the time we got an accurate diagnosis he qualified for a Failure to Thrive diagnosis at just 15 pounds he was under the first percentile for weight for his age.

He had an endorectal pull-through surgery when he was 15 months and we were under the impression that the surgery would fix the problem and he would be good to go.

Ten years later that hasn’t been the case. He has bowel incontinence and has to have his large intestine flushed out daily to keep him from having accidents. The accidents he had made for many diaper changes daily and frequent, painful skin breakdown on his bottom.  He had another surgery in 2014 called a MACE, so that we could do his bowel flushes through his belly button. The flushes take about an hour a day.

This post is fact heavy, with links to clarify all the technical terms, but this is also about what Hirschsprung’s means to Ben as a child and us all as a family.

Ben is a ten year old boy who has to sit on the potty for an hour a day, every day. He does this whether we’re camping, on vacation or at Grandma’s house. Even after two major surgeries for the disease he has to live with daily discomfort and stress from the disease.  If he has certain symptoms he has to go the emergency room to rule out serious complications, and this will continue for life.  Hirschsprung’s is a beast of a disease which steals quality of life and health. Many families affected by the disease face the same challenges we do. It’s not something that’s made an awareness issue because of the sensitivity of a disease that causes bowel incontinence, but even with the delicate nature of the disease it’s important to share, to understand, because this is Ben’s life, all of our lives, and the lives of others like us.

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On Lamenting

I was just in the shower, pondering seasons.  I enjoy the seasons, though some days more than others.  The year begins in harsh darkness and cold.  It takes a certain grit to endure blizzards and ice storms, and I relish the opportunity to greet harsh conditions and prove myself an equal match for them.  Then the world is reborn in the spring and the very earth breaks forth in praise for the release from the extreme cold.  The colors dance in the rains that bring to fruition even more color.  Summer warms us and the sun gives nourishment to the ground, to our crops and to our souls.  And with autumn comes the harvest of all that the goodness of summer provides, and along with it the crisp color on the trees the beauty of which signals impending death.  This order of things is inherently good and right.  We recognize it and take comfort in it because when the seasons follow each other in order we know that all is as it should be.  Conversely, when winter sneaks into spring’s territory we call it out.  When spring encroaches too far into summer we protest.  When summer heat interferes with our harvest we squawk in complaint.  We raise our voices when the natural order of things doesn’t flow as it should.  We shake our fists to the heavens and curse mother nature for her cruelty.  Even the animals, the plants and the very soil revolt when the seasons misbehave.  

There is a natural order of things.  We can endure dark times of hardships because we remember the order of things, and that life will cycle again to abundance and beauty. We can face the harsh times, because we know that sorrow only lasts so long. 

We are not made to abide in suffering for long months and years, it defies the very nature of the world.  Life is expected, and rightfully so, to be seasonal. 

When the natural cycle of life deviates from the expected order we wither.  Whether we get stuck in a winter of despair or the heat of the summer.  Whether the spring rains go on past summer of the fall refuses to give way to winter, the physical world languishes.

Our very existence demands good and bad, ease and trial, it is the essence of the world we live in.  When the opposites fail to balance disorder prevails.

Somehow I have fallen under the impression that protesting an exceedingly long winter of afliction is weakness, or lacking of moral character.  My shower epiphany was that the protest of disorder is normal, natural and expected.   I wonder if I have held myself to impossible moral standards of optimism and acceptance of chaos.  I have sanctioned complaints even when the plight of my child is so clearly opposed to the natural, normal, order of things.  

Today I will hold my tongue no longer. Cancer is a bastard. Even as an old man’s disease it plunders it’s victims. Cancer in a child defies everything that is good in this world. It is against the natural cycle of life and there are few things more horrifying. The treatment that saves lives does so at great cost, wreaking havoc on the body.

I weep for my child. I weep for my family. I scream at God, at the universe for allowing this to be a part of this world, a part of my life, to harm my child. I rail against the hideous afliction of this disease. For my child, for all the children.

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What Can I Do To Help

When Ben was diagnosed with cancer some people were beyond amazing at helping us through his 3.5 years of treatment, and others would just offer, “Let Me Know What I Can Do”, then fade into the woodwork, never to be heard from again.  We learned during that time what effective help looks like.

I believe people want to help but simply feel uncomfortable stepping into the gap and doing it, so I wrote this book, “What Can I Do To Help” to break down barriers and help people move forward in their desire to be helpful when a child is diagnosed with cancer.

If you have ever wanted to help someone but have been stuck on how to it, this book is for you!

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A writer’s prayer

Now I lay me down to sleep
I bid my mind, “Don’t make a peep”.
But all my words were stuck all day,
And now my all through my head they play.

And now I’m forced to decide
To write right now or stay and hide
Beneath my sheets so cozy warm
And just allow the thoughts to swarm.

I fear I’ll forget them when I wake
It’s just a chance I’ll have to take
Because my body’s oh so tired
Even though my mind is wired.

Please grant me now a good night’s rest
So tomorrow I can write my best.

Amen

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What Doesn’t Kill You

There’s a pervasive belief that bad things happen for a reason, or preciptate positive change.  I suppose there are plenty of examples of lives turned around after a tragic incident, in which the adversity was clearly a catalyst for self improvement.   But what about the rest of the times when the adversity triggers depression, PTSD, and the result is deterioration, sometimes to a catastrophic degree?  Or the remainder in which there is stasis after a tragedy, the person(s) affected merely keep getting by, without a life changing change for the better or worse?

I know that many ascribe to the belief that our trials could impact others’ lives, that we are but a thread in a richly woven tapestry that we cannot fully see or comprehend.  That God is working our tragedy for the overall good of his kingdom.  While this can create beautiful imagery, as a person whose family has endured many trials, I can say that I don’t want to be that red thread in the tapestry, the scapegoat that’s sacrificially offered to live through tragedy as a blessing to others, or to win souls for heaven.

Ah yes, maybe there is a bigger plan for an afterlife in which we will suddenly understand our hurts on a level impossible for our limited human minds, that God will show us the global impact of our lives and in that moment our grief with take on perspective which makes it pale in comparison to the good which it works.  Maybe.  But I am not ready to take this one to the bank.

I suspect that much of this philosophy, or theology, is crafted by those outside the tragedy in order to better process it, and when scripture is thrown into it,  people of faith will point to that claiming absolute truth.   Of course it’s also claimed by those who have experienced adversity as a way to assign meaning to their plight.  If you are that person I am not here to take anything away from your story.  But would you think any less of me if I admitted that I would ditch my son’s Hirschsprung’s disease, leukemia and mental illness in a heartbeat without a second thought about God’s grand design?

Here’s where the problem lies with this way of thinking:  If one believes that suffering is for the ultimate good, or part of God’s grand plan, it removes the impetus for them to step into another’s pain and act.

This philosophy is dangerous in that it can become a rationalization. When we rationalize away the pain and suffering of our fellow humans and take comfort in knowing that God is in control, we can go to bed at night and sleep well in the comfort of this rationale.

I don’t want to ever be comfortable with any suffering on this earth.

In the movie, “The Big Chill”, Jeff Goldblum plays a character named Michael, who is that single minded, sex craved guy who has a certain keen insight that peeps our from time to time. There’s a scene about rationalization, which goes like this:

“Michael: I don’t know anyone who could get through the day without two or three juicy rationalizations. They’re more important than sex.

Sam: Ah, come on. Nothing’s more important than sex.

Michael: Oh yeah? Ever gone a week without a rationalization?”

As a population, U.S. citizens embrace rationalization over action, especially when it comes to the pain of others. Today I urge you, whatever your circumstances or philosophy on pain, to allow yourself to feel the pain of another; to step into that pain and allow it to spur you to action.

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Living With Aphantasia, A Blind Mind’s Eye

You’re reading a fabulous novel, the imagery is perfect.  You can see the characters, the setting, every detail,  if you close your eyes it’s like you’re there.  This is a part of the normal experience for almost everyone, but imagine having no ability to create mental pictures.  A blind mind’s eye, if you will.

That is my reality.  I have no ability to conjure images in my mind.


In 2015 this anomaly was described by science and given a name, Aphantasia.

I never realized I was different.  I assumed that the term, “mental picture” was metaphorical, that everyone was like me.  I began to wonder about it when my daughter could remember detailed images, and from memory draw accurate pictures of people,  places and things. She told me she just sees them in her mind, and meant it quite literally.  Her minds eye seems especially acute, I’m afraid she got my share.  She’s painfully aware of the dichotomy between us, and often,  when she envisions things then describes them, she will turn to me and and pityingly say, “but you can’t picture it”.

If you tell me to think of a chair, I know what a chair is, and can think of different types of chairs, a plush upholstered chair, a wooden kitchen chair and the like, but I don’t get any type of picture in my mind.  I can describe to you the chairs in my kitchen with fair accuracy, but I cannot envision them.   I can remember every detail about husband’s appearance in words, but not picture his face.  My dreams are primarily experiential and auditory, with strong emotions and only vague, fuzzy imagery.  It seems that even in sleep my mind is incapable of visualization.

Upon reading the BBC article which describes the phenomenon, I felt a strange blend of feelings.  Having verbiage for my experience is helpful, but also uncomfortable, I feel like more of an oddball.  I don’t necessarily feel like I am missing anything, it’s the only experience I’ve ever known,  though now I understand why relaxing visualization techniques have always mystified me.  The soft voice describing a beach setting at sunrise is just words to me, so I was baffled that other people were so engrossed by such things; until I discovered the answer.

What I lack in my mind’s eye I accommodate for in auditory processing and memory.  And while I cannot picture a person’s face, I can recognize people, even from years before,with ease.  As you may suspect I consider hearing my primary sense, and vision a distant second.  I am especially tuned to the sounds of my environment, which as a parent is as good as eyes in the back of my head.

I don’t know if I would change it if I could, I cannot imagine what life is like with a visual imagination.  I suppose I’m fine as is, even if it seems deficient to most people.

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To All The Special Moms

I want you to know that I see you.

I see you running your child to therapy when your friends are running their kids to Little League.

I see you slipping out the of conversation when your friends are all chiming in about milestones and test grades.

I see you juggling appointments and meetings, always making sure you do the best for your child.

I see you sitting at your computer for hours researching what your child needs.

I see you cringe when people whine about the petty things that pale in comparison to your day.

I see you spread thin, but still going the extra mile for your family, and managing to do it with a smile.

I see you digging for depths of strength you never dreamed you had.

I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.

I see you reluctantly rising early in the morning to do it all again after another chaotic night.

I see you when you’re hanging on to the end of your rope for dear life.


I know you feel invisible, like nobody notices any of it. But I want you to know that I notice you. I see you in the trenches, relentlessly pushing onward.  I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy, and the doctor. What you’re doing matters.  It’s worth it. On those days when you wonder if you can do it another minute, I want you to know that I see you. I want you to know that you’re beautiful.  I want you to know that it’s worth it.  I want you to know that you aren’t alone.  I want you to know that love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work, pays off and success is yours to cherish, I see you then too, and I am proud of you.

Whichever day today is, you’re worthy, you’re good, and I see you.