Category Archives: Friends

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.

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Why I’m so hard to get along with…

Ever really wonder why I’m tired, cranky, overwhelmed, angry, inappropriate… tired.  Did I say tired?

Unless you parent a child with special needs, it is difficult to truly understand what we parents go through; I am certain you can sympathize because your two year old is horrible, your daughter won’t eat her vegetables and your future NHL’er didn’t make the cut.  It’s not quite the same.  Not less important, just not the same.  I am frustrated by society’s response to my child… let me run some of the things that drive me nuts.

  • You put your kids to bed, kiss them, say good night.  I prepare four different medications, a vitamin and administer them all at different times while trying to keep my son asleep also while his g-tube is stuck between his legs and wrapped around his thumb.  (not even kidding, my husband just came in and told me he cut a hole in Ben’s shirt because the tube was kinking and he didn’t want to set off the alarm while he was asleep)
  • Full day of fussing, cranking, crying, swinging, flailing, biting, puking.  Followed by the same type of night.
  • The same “support” person pushing for the same goal year after year and then checking with my mom to see if we really don’t see the value in it.
  • The smell of thrown up PediaSure Plus.  It’s better than normal puke but the smell is everlasting.
  • Cost of Ben’s specialized rain stick: $300 after shipping and duty because it’s not available in Canada.  Cost of a regular rain stick $10.
  • Additional costs to prescriptions because it has to be specially mixed, brought in or purchased from a dispensary.
  • Leaking g-tubes.
  • People who tell us it couldn’t have happened to two “better” people or more “experienced”.  Don’t even get me started on the “God only gives us what we can handle” crap.
  • Movie day at Ben’s school.
  • Questions like – “Can he hold his own toothbrush yet?” “Will he ever walk?” “He’s really 5 years old?”
  • Charting progress in reference to milestones.
  • Ben crying for food, downing a bottle and then throwing it all up.  At 4 am.  Needing new clothes, new blanket, new chair.  And then his little sister waking up to his cries.
  • Heavy wheelchairs.
  • Extra medical insurance for travelling requiring a letter stating that we’re not going to a destination for medical purposes.
  • Lost friendships from people who don’t understand that not only do I not want to go out every weekend, or come to your Tupperware party but that the only way I’m going to visit with you is if you come over, bringing coffee and make a rule that showering is optional.
  • Inclusion.  I think it’s an important thing.  I’m a huge advocate of it.  My son will not be continuing his “education” beyond this year.
  • Nurses thinking I’m challenging them when I tell them they won’t be able to draw blood from Ben.  Don’t try.  And if you do, please be advised that you’ll have to explain yourself to Ben’s doctor.  He’s scarier than I am.
  • My son does not have scoliosis.  I know it’s probably more confusing that he doesn’t but I’ve told the doctor a million times and he still asks how “it’s” doing every time we have an appointment.
  • People saying “it’s okay” when Ben is being a turd.  Just because he has a disability doesn’t mean he can’t be somewhat accountable.
  • Parents who hinder and enable their children.  Disabled or not.  Encourage and push your child to be the best person they can be.  I will never understand or support an excuse to be mediocre.
  • “At least you have that one thing we as mothers are always asking for.  A baby forever.”
  • Crowded bath tubs.
  • AT equipment in the bathroom because you can’t leave your child alone for five minutes to take a shit.
  • “You’re such an inspiration.”  Let me tell you – I am not.  I am a mother who adores and loves her children and would do anything for them.  I hope you would too.

I am sure there are other things I can add… I feel like this is one of those “stupid things people say to parents with disabled children” lists.  In all seriousness though, we are just the same as you but we experience things differently.  The best thing you can do is listen, know how I like my coffee and forgive me when I suck.  I’ll make it up to you… one day.  I promise.

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

Benjamin’s Friends

The past month has been a hard one for my extended family – the PontiCerebellar group I am a part of. We have lost three of our beautiful children and I’m feeling unsettled. My heart hurts, my eyes are constantly filled with tears and I’m struggling to express myself fully. I can’t comprehend it or understand it; the life cycle confuses and every “it’s not fair” thought has crossed my mind.

I look at Benjamin and a feeling of nausea waves over me as I wonder when it will be his turn.  A thought I should never have to consider; children are supposed to outlive their parents and for the most part, you all reading this, will be lucky enough to have that come true.

I know I will not.

Yet, I choose to pretend this fact isn’t true and continue to ensure that whatever kind of day Ben is having (sick, healthy, sad, happy) is the best day he can within his own means.  I will do anything for this love of my life.

For the families who have lost their children, I have no words.

But I feel you all in my heart and think of you in each thought.  Please know what while I don’t know any of you, I feel as though you are my “other” family and I love each of you.

Even if only from a distance, I will do everything you ever need or ask.

Stars in my Universe

Ethan (Dec 24/12)

Isabel (Dec 19/12)

Rudy (Dec 4/12)

Maia (May 20/12)

Jackson (Jan 30/11)

Joshua (Nov 09)

Inge (Oct 13/9)

Summer (Sept 4/9)

Everyone is entitled to complain about their kids. Regardless.

I was recently speaking with a friend of mine at work; he told me that his kids were ill and that he had not slept but that he couldn’t complain about it.  I told him that it sucked when kids were sick and he added that he can’t complain when he doesn’t sleep because he knows what we go through daily.

What I have to say about that.. is this:

Everyone is entitled to their own crappy experiences.  Just because ours sounds worse, it doesn’t mean that it is.

We are used to not sleeping.  REALLY not sleeping.  It is a rare night when we can go two hours without being woken up by a cough, or spitting/bubbles, or laughing or worse.. choking.  It no longer fazes us.  I can go for days without sleeping more than a few hours and even then, they don’t need to be consecutive.  We’ve been doing this for over four years; we have a “tag” out system and when one of us really needs a nap, they get it.  No questions, regardless of plans.

YOU are not used to not sleeping.  Or having kids up all night.  You don’t likely have a plan in place like we do.  You are not used to getting up at three a.m. and  staying up for the day.

You ARE allowed to complain and whine and moan about your children.  We all are.

Please don’t let our experience take that away from you.

If you don’t complain about your kids, then I will feel really bad when I do! 🙂

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.

JazCrafts

In 2009, I was looking for a cute toque for Ben to wear – scrolling through Etsy, I came across an adorable pumpkin hat.  Knowing that my girlfriend Jasmine liked to crochet, I asked if she could make us one instead of ordering it from the website.

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Since then, she has created her own side business and is making the most amazing hats, headbands, scarves, etc.

You can find her two ways:

Facebook: https://www.facebook.com/JazCrafts

Website: http://www.jazcrafts.ca

Be sure to check out the Benjamin’s Bugs hats that she has created on Ben’s behalf.  In May, we will again be participating in the SportChek Mother’s Day Walk & Run for the Stollery Children’s Hospital – both my littles ones will be wearing one.  Support Jasmine’s venture and this wonderful hospital in a super cute way!