Tag Archives: acceptance

Introducing Benjamin

Introducing Ben to new people isn’t something we do as often as we used to; we have great family connections and have surrounded ourselves by the same people for most of the past nine years.

As I transitioned into a new job this year, it has been interesting and slightly funny (for me!) to try and explain Ben’s diagnosis without it sounding as dire as it maybe is.

Ben is an anomaly; he is one of a kind. There are still only a handful of people officially diagnosed with his type of PCH and when I create that visual for a new acquaintance, I don’t think they always know how to react.

I just want to clarify – it’s not sad for us. We are no longer sad or upset by his diagnosis.  We have sad moments and stressful times but we have mourned the son we thought we were going to have and now celebrate the amazing person Ben is.  That ship is so far gone for us; Ben is exactly who is meant to be and we’re okay with that.  So you can be too.

New people in my life have expressed sympathy over our “situation” – what situation? I appreciate your sympathy but really don’t need it (not meaning to be harsh, but this is our everyday… it’s just reality).  And I definitely don’t need your pity so don’t even go there.

What I do need is for you not to judge me when I come to work with a big mess of drool on my shoulder or if I wear the same thing for five days straight because my priorities don’t often include my wardrobe.

Explaining Ben to new people actually makes me feel bad because I know how it sounds.  It sounds tragic and terminal and unfortunate.  I have heard myself say several times “It’s really okay” or “It’s not as bad as it sounds or looks on paper.”

I do sincerely appreciate those who express curiosity or want to know more about him; I’m happy to answer your questions and share his life with anyone who wants to be a part of it. I can talk about Ben for hours if you want.

For some people, I believe that it is difficult to imagine that kids like him exist. But he does.  And there are other kids with rare conditions whose stories are similar; some of those stories are happy ones and some are sadder or shorter.  We are the lucky ones…

We are lucky to have a very happy, mostly easy going child, who considering the adversity and challenges he faces daily, soars through his life smiling and laughing and smiling and laughing… and sometimes biting.

February 12, 2015

My parents are right (how annoying!) – I only post when something is going wrong or has changed for the worst for Ben.

When Ben learns something new or improves a skill, we celebrate it but for some reason I don’t describe here how wonderful it is.  Instead I leave this page for the downward turns and spirals that impact his day to day.

Ben’s seizures are changing.  This is not uncommon for anyone who has any kind of seizure disorder and there are many factors that can contribute to it.  Growth, general deveopment, age, health, neurlogical changes (and those are just the ones I’m aware of).

It’s scary though.  Ben has been “stable” for nearly two years.  His health has been moderately well since our foot fiasco in May 2013 and we feel like we have a pretty good hold on how to address his health.  We haven’t been to seen his doctor since October; unheard of.  We usually have a standing appointment – monthly, sometimes bi-weekly, sometimes weekly depending on what’s going on.

It’s hard to allow myself and justify being upset because days like yesterday are expected but that’s my baby.  He is my six year old baby and he has the abilitiy to break my heart and affect me like no one else.  I constantly worry for him but use that worry as means to push on through and as a force to ensurethat his quality of life is amazing.
The rational parent in me accepts that consistency is unattainable in the life of someone so medically fragile as Ben is.  But the optimist in me knows how strong he is and that he kicks major ass considering what he’s been dealt with.

Music to his ears

On the long weekend, we were honored with tickets to the Edmonton Symphony Orchestra’s Symphony Under the Sky event in Hawrelak Park.  It was set up by one of our Wish Granters from Make a Wish, Katherine,  and turned out to be an absolutely amazing experience.

We are never quite sure how Ben will manage in large group settings but as always, he blew us away.  When the music started – Benjamin went still and would listen intently.  For nearly two hours both Sunday and Monday, he sat pretty still, listening to the ESO perform a variety of songs and melodies. Francois and I both noticed when Ben recognized a song, as he perked up a little higher and his movements settled.  It was truly eye opening for us and proves, as in history, just how good music is for the soul.

Thank you so much to Mike from the ESO for allowing us to attend such an incredible event as your guests!

Unbelievably Grateful

I’ve tried to write this post so many times but then I start to cry and can’t think of anything clever or properly thankful to write.

Francois and I are completely overwhelmed and appreciative of all the support we received over the past eleven days.  When we started fundraising for Ben’s equipment we figured nothing bad could come of it and maybe we could get a little money to help us out.

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YOU have no idea how much the smallest of contributions has made.  YOU who donated to us, have no idea how in complete awe we are of YOU.  We are completely grateful for YOU.

We cannot say it enough so here it is one last time.. we sincerely thank each of you – those who contributed, those who shared on social media, those who passed along Ben’s message, those who hold him, care about him and love him as much as we do.

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Say what?

PLAYSCHOOL.

Yup, a WTF moment for me.  We have officially begun the registration process for Ben to go to playschool in the fall.  Francois and I have wavered back and forth as to whom is most hesitant, fearful, excited, anxious….

We have moments of silence following a discussion about the fall and what it will mean to Ben; I’m sure us both questioning our decision and reviewing for the millionth time the pros and cons of sending him.  Two years ago, one year ago, six months ago we never would have considered sending him.  What is the point in him going to school?

In September when we joined G.R.I.T. several goals were set for Benjamin around mobility, speech, strength,etc and he has surprisingly achieved most of them and had to amend them to push him further in his development.  When we look at everything he has accomplished since the start of the program and see it outlined as such on paper, it’s nearly unbelievable.  Why can’t we push him even further and into this type of new challenge?  The conversations about playschool have popped up here and there over the past six months as expected but we just didn’t see a reason to send him.  What would he do in a classroom setting?  What if he felt overwhelmed?  Would his new worker identify when he is feeling stressed, or hungry, or ill?  Ben gets sick easily – will it be worse with more kids?  Francois worried that other children will make fun or pick on him.  Will he be accepted by his peers?

With all these questions and debates, one thing stood true throughout – how can we ever know for sure what will happen… unless we let it happen?  Only through trial and error can we understand what Ben is comfortable and capable of.  While he feels anxious in large, crowded environments we also know he loves small groups of children and responds positively to their interactions with him.  He loves social settings and excels in his tasks when surrounded by friends, family and laughter.  With G.R.I.T and his worker, any fear we have will hopefully be handled immediately or at least brought our attention.  We couldn’t be heading into the school system in a brighter light.

Come September, we will have a four year old and he will be in school.

Jeepers.