Tag Archives: appreciation

Let’s Challenge ANOTHER Word, Shall We?

Surprising?  HA!  I doubt that – to read that I challenge yet another word associated with Ben’s diagnosis and life journey.  This challenge isn’t like my internally brewing frustration for the use of “retarded” but instead a question of why a word is used when referring to my son (or your son or you daughter).

The word is SEVERELY

  • to an undesirably great or intense degree.  “our business has been severely affected by the slowdown”
  • strictly or harshly.  “the culprits will be severely punished”

Most of those words do not apply to Ben’s condition.

Undesirable presents as choice.  He condition is undesirable?  Well duh.  Can we change it?  Nope.

Strictly or harshly?  Strictly implies structure.  HA.

Harshly.  Not at all. Neither life nor condition are harsh for Ben.  Maybe on the rest of us but we’re not talking about “us” – it’s about Ben.

Yes, maybe intense degree applies.  1/6.25 billion.  That’s intense.  11% of a cerebellum.  Also intense.

But can anyone actually tell me that when they hear the word “severely” they’re considering the intensity of a condition and not the effects of it?

I would prefer the word SIGNIFICANT to be used.

  • sufficiently great or important to be worthy of attention; noteworthy.  “a significant increase in sales”
  • having a particular meaning; indicative of something.  “in times of stress her dreams seemed to her especially significant”

Sufficiently great or important to be worthy of attention.  Yes the condition is and yes, Ben is.

Indicative of something?  Of course; significant developmental delays?  For sure.

Severe creates a shadow of negativity over Ben’s life and over his diagnosis; it doesn’t have to be looked at it that way.

Ben’s life and world is far from harsh – it’s bright, fun, happy and centered around him.

That’s of particular meaning if you ask me.

The Downside of Not Growing

The downside of Benjamin growing at such a slow rate is that when he does suddenly sprout an extra inch, his needs change dramatically.  This summer, Ben surpassed the “he’s still small enough to use an infant bucket seat” which was both awesome and scary.  Suddenly we needed new support equipment and FAST!

Hello fundrazr.com website!  In a week and a half we managed to raise enough money for Ben to get both a new reclining car seat which specifically addresses the needs of children with disabilities and for two new sleep systems (one for our house and one for the day home) – we are still incredibly grateful for everyone’s generosity.

Bug loves his car seat!  We had been borrowing one from his day program so we already knew how well it fit and how to adapt it properly but it still makes me smile when I watch him look out the window at the momentum passing by; I know he cannot really focus or see anything in particular when we’re moving but how fabulous is it that he’s even aware of outside (on the plane to Jamaica he also watched out the window).  Thank you for your help in obtaining this critical piece of equipment!

Now we’re onto sleeping and borrowing a Dakota chair from Home Care.  I have never seen him sleep so comfortably or stay warm like he has been the past few nights.  We can’t wait to meet with the company and get one made specifically to his size!

Dakota Chair Britax Car Seat Dakota Chair Britax Car Seat

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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