10 years later, Life with EDS

First of all, I think today because of Johns birthday this weekend.   I’ve taken an extended walk down memory lane.  Thinking a lot  about how our lives have changed in the last decade.  John turns 10 on Saturday, Feb 4th.  Wow it is amazing for me to think back a mere decade and realize how much our paradigm has shifted.

Invisible Illness explained, More than Hypermobility

First of all, for those of you who are wondering what EDS is, and I know most of you guys are.
EDS (Ehlers-Danlos Syndrome) Type 3 (Hypermobility) is a multi-systematic disorder whereby the body produces defective collagen. His original diagnosis was Benign Joint Hypermobility.  A term often confused with EDS type 3.
Collagen is the building block essential to all 12 systems in the body.
Think of it like building a 4 ft. tall Lego structure that’s made of 50% thinner  plastic than a normal Lego block. Eventually every aspect of that structure would begin to have problems.  This is very much like Johns body.  We often compare it to play-dough.
It is a life altering diagnosis but one I am glad we received.  Some people wait 20 plus years to have a cause for their life long, endless suffering.  In some ways  hearing we can never fix this, as it is written into his DNA.  It gave me the push I needed to decide that we need to seize every good day and make the most epic memories we could.

Another Piece to the Puzzle

He also has MCAD (Mast Cell Activation Disorder).  This one is  fun,  because at any moment and  for any reason his mast cells can decide to turn on him and create anything from hives, pain, swelling, headaches, breathing difficulties and anaphylaxis.

Add on top of that dysautonomia. Dysautonomia is the dysfunction of the automatic features of your body,  features like breathing, vocal cords, and  the vasovagal nerve, just to name a few.  John has Vocal Cord Dysfunction, Vasovagal Syncope and is borderline POTS.  And this is EDS trifecta.  EDS, Mast Cell, and Dysautonomia.

The signs were there, we just didn’t know

As an infant as young as 3 months old John exhibited signs of his disorder.  At the time we really didn’t understand.  John was my 5th child and all the advice of more discipline, medication and instability just made me push harder to find an answer.

Eventually we stopped going places, and lost friends.  Its hard to act like everything is normal when your child holds his breath, passes out and turns blue multiple times a day.  There was a lot of finger pointing and mumbles behind my back.  But to be honest, I never cared. John was my child and I firmly believed there was something more to his puzzle.

So I took a wait and see approach.  I honestly can not even tell you why I decided this would be best.  I knew no one in my position.  Knew of no other child like John, with his seeming struggle with life.  Looking back it seems like a complete and total leap of faith onto a cloud.

He has struggled and blosommed in the last decade.  He taught himself to read. And despite not holding a crayon, pen or pencil until he was nearly 7,  he loves cursive and using a quil pen.  One of his disabilities is low hand strength.  So his endurance is low.  He writes when he wants and loves Minecraft, YouTube and his xBox 360.

The INVISABLE part of his illness

In many ways you’d never know anything was wrong if you passed him on the street.  That s the invisable part of the illness.  He often rides in my cart while we shop because he gets winded quite quickly some days.  I do notice people giving a sideways glance of disapproval when they notice how old he is.  ‘Ive never had someone say anything to me but I’m waiting.  I’m sure it will happen.  I just hope that I am able to explain and educate that person in a constructive way and not be angry at being judged.

 Life Much Changed

Little did I know his life would deteriorate so much by summer of 2016 that now at 10 yrs old he has a wheelchair and electric scooter because his exercise tolerance is so low.  This once inspiring race car driver who had won a USAC championship his rookie year would have all his dreams taken away with one episode of vasovagal syncope on an afternoon in Sept 2016.

I can confidently say today, with absolutely no regret.  I wouldn’t go back and change a single thing.  John has good and bad days.  We have figured out how to manage his meds to maximize his quality of life.  He is also a very good manager of his own body.  He has a very proactive role in his treatment and I trust him to tell us if any issues arise.

Worth the Wait

We have determined he has pretty much been in pain his whole life.  Therefore when he was younger pain would overload his sensory system causing the stress that triggered his Vocal Cord Dysfunction. I can not even imagine what bravery and courage it would take to keep fighting.

No Regret

John is a fighter, we just didn’t know early on exactly what he was fighting.  An amazing human with the heart of Van Gough and the sword skills of Blackbeard.  An artist, theater aficionado, and amazing dancer with the drive and dedication of someone much older and wiser than his mere 10 years.
The current estimation is  that an EDS body of 11-17 yrs old is relatively comparable to a 40-50 yr normal body.  Per those estimates he is fairing quite well and we hope he will continue, although in reality we know there are most surely rough seas ahead.

Our New Normal

We welcome this as our new normal.  A turning of a page, a new chapter in our book. The book in which we are writing every moment down to remember the epic days.  So we can have faith on the no so epic days that better days are yet to come.   Armed with answers and courage, we can face the future together.  Sometimes struggles wear you down, others can give you the strength needed to turn the page and the faith needed to start a new chapter.

It is our hope through OTR we can bring some awareness to invisible disorders.  Sharing our happiness in penning a new chapter, one in which we control the entries.