Hudson’s Story

Site created on February 14, 2011

Welcome to Hudson's fan site. Thanks to all of our friends and family for your continued support, love, and prayers.  We couldn't travel this road without you!



Hudson was diagnosed with critical aortic stenosis at our 20 week ultrasound. In short, the valve to the blood vessel leading out of his heart (aorta) was very narrowed, preventing the normal flow of blood through his heart and out to his body. It was wrecking havok on the development of the rest of his heart.

His first vacation was to Ann Arbor, Michigan, at 22 weeks to have an in utero balloon valvuloplasty--a big way of saying that valve in his heart was ripped to open it up like it needs to be to function normally.   

Hudson was born in Ann Arbor on April 21, 2011, weighing 7 lbs, 14 oz.  Simplistically, Hudson's ticker didn't end up developing correctly.  In medical terms, his cardiac diagnosis is a varient to hypoplastic left heart syndrome.  But we think he's perfect. 

He had his first surgery, called a hybrid procedure, on April 27th, 2011 at the University of Michigan/ Mott's Children's Hospital.   On August 1st, 2011, Hudson had another surgery, a varient to the Norwood procedure. The next stage of surgery, the hemi fontan, was done January 13th, 2012.  His last planned surgery, the Fontan, was completed January 10, 2014, finalizing the rerouting of his blood flow using just the right side of his heart to supply his entire body.  He continues to march to the beat of his own drum in his various stages of recovery and growth.

Newest Update

Journal entry by Shannon Boyd

It wasn't bullying they said, because it wasn't one person over and over again, it was a lot of people.  It wasn't bullying they said, because even though he has disabilities, the other kids didn't KNOW he had disabilities.  I could do a presentation, they said.  

He said. She said.  Most of it unfounded, they said.  In the end, everyone was lying all the time.  Including Hudson, who felt desperate in his attempts to stick up for himself.  

So Tuesday, after taking accountability for his defensive words and apologizing to children who will never be held accountable for their incessant unkindness, we were done.  Hudson gave a full heart felt apology while one student rolled her eyes.  Yes, their parents knew.  And no, they believed their children held no blame.  It was terribly unjust.  We walked out over sidewalk chalk that read "BE KIND" near the front entrance. 

My mom said we rescued him.  I said we're just planting him in new soil for him to grow.  The school decided the narrative to his class should be that Hudson was "being homeschooled to better meet his educational needs." 

We are heartbroken.  Heartbroken and angry that a system we believed in (and a school we formerly LOVED), allowed him to be hurt over and over.   We are constantly trying to reframe this to be positive, but the cognitive fight is hard.  Holding space for two opposing feelings is hard, too--Drew loves school, mainly BECAUSE of her peers.  So she stays in a system I have lost faith in.  It's unsettling. 

We could have advocated for him at higher levels.  It would have lead no where; these are systemic failures of a faulty school system.  I left working in special education at the school because I could no longer watch the people in the trenches try so hard while administration left them unsupported in so many  ways.  Hudson is no different.  He is the poster child for being provided with all the legally entitled services on paper, while somehow still not meeting his needs.   We could put him in a different school, but it filters into the same middle school next year.   We could change districts, but then  I spend hours a day driving around for drop off and pick up.  Private school in Iowa offers special education services only through public schools.  Frankly, I'm tired...no, utterly exhausted...of advocating.  Pivoting seemed to be a better use of the almost obsolete emotional energy we have left.  

So here we are again, restructuring our lives.  My life.  Maybe I'll embrace the homeschool life I never believed in and reject society's unreasonable expectations of us all.   Raise chickens illegally in the back yard.  Start an organic garden.  Or any garden really.  Walk barefoot among the pesticides.  Sew my own shapeless dresses.   Stop wearing a bra. Read books again instead of scrolling Yahoo! News. 

It feels like the world is ending.  But maybe, just maybe...it's just starting.  

 

This story would be incomplete without acknowledging the efforts of Jill Kluesner, his special education teacher for the past 7 years, who tirelessly advocated for him.  Thank you for showing up for him when no one else would.  For loving our mess, and seeing our good.  I'm grateful beyond words. 

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