Tag Archives: Ben

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.

Time to change my speech up a bit

Whenever Francois and I have a discussion about Ben and his sleep patterns, we are always asked how we manage.  Our answer is the same and something a long the lines of “It’s been six years of not sleeping, you get used to it.”  I think that speech is has become a little less convincing.

We are used to it but our bodies are not as well adjusted as they were even a year ago let alone six years ago when Ben was a baby.  Our bodies are tired, our patience well worn and my eyes are suffering in the form of big black bags I cannot get rid of.  We used to tag each other out but now, we take turns sleeping on the couch with Ben so the other can sleep.  Three all nighter’s in a row used to be a rare occurrence and now it’s become the norm.  Ben has fallen asleep at nine and then up by one every night since Wednesday.  The past three nights, not going back to sleep at all.  It’s beginning to take its toll.

We base many of “tomorrow’s decisions” on his night because it directly influences our night and even though we try to be considerate of each other, it’s hard not to want to punch your spouse in the face while they’re snoring away and you haven’t yet been to sleep.  We started with two nights respite in October and I think it’s time to up the anti (already have the doctor pushing for it anyway); maybe we’ll get some sleep in the new year?

Still Affected

Ben had his foot surgery… months ago now but today when I was slathering him in lotion (mostly because he loves the tickle of it), I gave him a quick foot massage and he winced.

Where he had the pin and infection in his foot is a small little red indent.  It’s clearly sensitive.  And I am also clearly still sensitive because I burst into tears as I felt him pull his foot away.

I am still so angry that we let this happen to him and although there is no fault in it – shit happens… as his mother and protector I am furious.  And I am sad for him.  And I wish he knew how sorry I was that I let him hurt like that.

I’ve said it before, but will say it say it forever… never again.

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

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.

Purposely Exlcuding My Son

This past Saturday, we loaded the babes up in the van and headed to Francois’ parents for the afternoon.  We also planned a play date with the twins and were excited to see how the babies played in the pool together.

BUT…

We left Ben behind. 

And on the way to the pool (which is only a five minute drive) I bawled and felt sick to my stomach, so bothered by the fact that he would not be joining us on this cousin play date.  I felt horrible because Ben loves to swim.  He loves to splash, lay his head in the water and listen to the sounds of the bathtub or pool, loves to kick, laugh and watch other kids swimming around him.

We’ve left him behind before, taking Avery and Poppy swimming for a “girls date” with the parents and leaving Ben with a set of grandparents.  (Don’t get me wrong – I know and truly believe wholeheartedly that Ben gets just as much out of one to one time with all of his grandparents and loves when he gets their full, undivided attention) but somehow the idea of him missing out on play date with with Callie and Swenton, felt much worse than him missing out on swimming with his siblings.  To others it may seem like the same opportunity but to me, as his parent, it felt and continues to feel separate.

Over the past few days I’ve tried to decipher my own emotions around it and ultimately decide on why exactly it has been eating at me this much and I think I’ve narrowed it down to choice.  Like with so many other things in his life, Ben does not have a choice when it comes to swimming as unfortunately there is a best and worst case scenario in this department.  We have learned that from experience, swimming does not jive well with Ben’s health.  No matter whether it’s winter or summer, freezing out or hot as heck, Ben will get sick afterward.  He cannot be submerged in water for long periods of time.  It’s inevitable.  We have tried wet suits and water shirts, toweling him off quickly and completely when getting out of the pool, wearing a toque and sweat clothes, turning the heat up in the car, scouting out heated pools… it does not make a difference, Ben still manages to get sick.  Every. Single. Time.  And not just a little cold with a running nose sick but entire body shut down mode, will not take foods orally, double ear infection kind of sick.

It isn’t justifiable to his health and over all well being to take him swimming.  We have to consider the bigger picture.

While he loves to swim and has shown us in many different ways that he does (verbal, physical, emotional) the outcome is predetermined.  I don’t even feel the sense or urge to argue against it anymore but it does make my heart hurt and my eyes tear up.  Over time, I’m sure I will become just as desensitized to this as I have with everything else he “can’t do” or “can’t participate” in because of whatever reason at time but it still sucks.  There is no other word for it.

I will however remain hopeful that one day, his health will improve so much that we can try again.  And we will continue to provide as many opportunities as we can (beach days, splash parks, water tables, sprinklers).

In the oh-so-famous words of one of my nine year old’s favorite singers – “Never say never”

The Sickness Cycle

Ben, like many children facing similar challenges, has a sickness cycle.  He’s healthy for a month or two, then sick for a month.  Then healthy, then sick.

In February, we had our first unplanned Stollery stay and ended up there for a week.  Benjamin wasn’t tolerating feeds – orally nor bolus feeds and it quickly became a scary situation.  As everyone associated with him knows, weight loss/gain is our biggest obstacle and ensuring that he remains healthy within such great limitations is something we face daily.  I made an appointment with Dr. Chatur to get him checked and knew that the chances of being admitted were about a million percent (yes, that exists.  You can be that sure something is wrong with your child that is not fixable within your own means at home); I brought packed bag for the both of us.  By that afternoon, we were nestled into an emergency room bed.. then a few hours into the trach room (adorable little ones pulling out their tracheotomy tubes!) and then into our isolation room.  It was determined that Benjamin had caught some sort of viral thing and would need to be isolated to make certain he didn’t infect others.

The main concern while there was his hydration levels and for six days straight, he received a saline line into his foot – we’ve never seen him so puffy before!  We continually tried adding formula to his feeds but it took him up until day four to begin tolerating them and even then, at a slow slow slow pace.  Finally, an entire week later we were able to leave the hospital even though Bug still wasn’t quite back to normal.  Still, a few weeks later he was showing signs of a new virus and sure enough, he caught Bronchiolitis (infection in the lower lung).  We ended back at the Stollery on a Saturday night but fortunately the doctors did some testing and sent us home with the same plan we left with last time.  BUT with the exception of us having to follow up with Dr. McGonigle/Dr. Chatur during the week.

By far, those few weeks have been the most trying for us a family.  It’s a difficult situation to live in daily, unsure of exactly how Benjamin is being effected by these constant colds and need for medication.  We know he has troubles identifying pain so everything remains a guessing game.  Most children, when they get sick will “sleep it off” for a few days.  When Ben starts sleeping too much in a day, that’s a clear sign that we need to take him in.  He rarely holds a fever for than a few hours at a time because his body doesn’t regulate itself so even though the thermometer may not indicate it, he could be feeling awful.

Since the stay though, we have discovered one new, amazing trick.  In hopes of keeping him hydrated under any circumstance, we were only giving him water at night instead of his formula.  The water seems to be benefiting him in more than just that way – it’s created an increase hunger during the day and he’s now taking up to three bottles a day instead of fighting to get him through one.  Huh!  Who would have thought!

The above being said, we are extremely grateful for our family, friends, doctors and nurses who managed to keep us sane that week. You are all incredibly lovely and so much appreciated.