Category Archives: Family

Family thoughts, events, memories to share

Mama Jinxed It

For the record, until this December I have never said something out loud in regards to Benjamin’s health that could “jinx” it.  I refuse to even celebrate his birthday early; if it falls mid-week, his party is the weekend after.  One year, his mylar balloons got loose… one flew away but the number 4 got stuck in the tree and Uncle Jimmy climbed up it for me because I was so freaked out by it.  

But I jinxed it this time… Mom and I looked back a couple of weeks but couldn’t find a Facebook post about it so I must have said it out loud that Ben managed to go all of 2016 without going to The Stollery Emergency Room but on Boxing Day, guess where we were!

A four day temperature is cause to bring him in to see Dr. McGonigle and when the office is closed, the emergency room we go!

They checked his ears and lungs and gtube site but nothing.  It was a resident (very kind one!) and a doctor I had never met before.  As they were leaving after checking him out, they gave each other the looks of “what should we do?” And “I have no idea” and told my mom and I that they were thinking about running some x-rays on his gtube in case it was dislodged or his lungs just to “make sure.”  While they were very nice about it, I had a sense that they were playing a guessing game and while being helpful, had no idea where to go with Ben’s care.  

After they left the room, I looked at my mom and she shrugged so I went out to the desk; I asked the doctors if they felt my son’s condition was an emergency or if he would need to be admitted to which they replied “no”.  I told them that I would much rather take him home them and call his regular pediatricians office tomorrow and come in a second time, then to have them run tests unnncessarily.  I also told him that I was faily certain Ben’s tube is fine on the inside; I assured him that we would bring Ben back in if his condition worsened and that we had 24hr care in place.

And the truth is, If Dr. McGonigle or Dr. Chatur want us to run a hundred tests and were just guessing, I would do so without question!!

 But they know my son and I know them.  

The resident stated that he understood (again, very nice about it!) and asked me to give him a few minutes.

Then I closed our room door and burst into tears.  Overwhelmed.  It’s so hard to make decisions about your child like that, especially when they are already so fragile.  My poor baby is sick and all I wanted was to make him feel better, not worse.

I called my husband to make sure he was alright with my call…  that he was okay if we left the hospital and head back in tomorrow to see our regular doctors but mid-conversation, the resident returned and told me that our doctor was actually in the hospital and that they had paged him for us.  

Dr. McGonigle came a while later and checked Ben out.  I explained what was going on and that Ben had not been his usual happy, easy going, playful self and that he had been lethargic and unwilling to eat.  He asked how long the fever had been running; I told him four days and that’s why we came in to which he replied “that’s right then.!” (Relief on this mama’s part to hear your doctor acknowledge that you should have brought him into emerge.  I always feel bad if we’re taking up space unnecessarily.)

He told us that Ben has a viral infection and will need to run its course.  Hydration and Tylenol/Advil.  That’s it.  No testing necessary.  He also checked out his gtube site and asked that I bring him in next week to have his site “fixed” and for a follow up.  

And then I hugged him and kissed his cheek because there is no one in the world like him.  And I would say the same about Dr. Chatur.  We are so lucky and fortunate and grateful to be under their care.  Even Ben cracked a little smile when Dr. McGonigle came over.  Those doctors are a part of our extended family.

My Ben is still down today but did play in his jumperoo for an hour, watching PJ Masks (his new favourite!) and that is a bright sign of better things to come.

And a reminder to never say things out loud before they actually happen (or so they don’t!). Xo

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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.

Sweet Six

OH MAN?!?!?  What else is there to say?  

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My love.  My bug.  My sweet, sweet Ben turns SIX in just under two weeks.  How did that happen?  Where did the time go?  

This year for the first time I’m not going to consider everything that got us here.  The doubt, the fear, the sleepless nights DO NOT MATTER.

All that matters this August is that Ben is HAPPY.  He is perfect.  He is loving and loved.  He is OUR BEN.  He is MY BEN.  He is wonderful.

And he will be SIX.   And that is amazing and something to be celebrated.

Join us in celebrating LIFE by wearing BLUE and/or making a donation to the Make A Wish Foundation this year in his honor! 

https://www.facebook.com/events/646792142068729/?ref=br_tf

A long time between…

I think the timeline between posts on this blog are so distant because Ben is doing so well.  I’m afraid to say it out loud as it tends to jinx his progress.

Two weeks ago, Francois and I (somewhat simultaneously) decided that it was time that Ben have his own room again.  He hasn’t had his own space since he was an infant as from birth until the moment we got overnight funding, he slept in our room.   And often on my chest or in my arms on the couch.  Now that we have two lovely nurses that accommodate his sleeping pattern (also known as “without a sleeping pattern”) – it’s time to give him that space back.

Practically overnight, we cleared out our extra room that we had been using for storage, swapped beds with Avery so we could use her day bed in his room, purchased furniture, decorations and voila! After placing his personalized “B” from his Ma Tante Chantal outside his room door, Ben had a bedroom.  He had.. HAS a space of his own.

Overwhelming but exciting!  Best part – he laughs when we take him down there now; like he knows it’s his.  I could cry just thinking about it.  Such a milestone moment for our family!

Ben's New Room 10440978_10154188519885697_5477989707695855068_n

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.

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?

Two years old and she knows…

Ben has not been feeling well lately and though is on what could be a permanent anti-biotic for his constant ear infections, guess what… he has a massive ear infection.  My poor boy just wants to curl up on his mom (or Nana when there) and spit, drool or flick his mouth (which is how he self stims/relaxes).  Last night, we’re curled on the couch with Poppy watching a Curious George Christmas special and she turns to me, asking if Ben is sick.  I told her yes, which is why he’s so quiet and curled onto Mommy.  She then tells me Ben is her big brother but that she is bigger than him.  Yes, that’s true Poppy.  A few minutes pass and she tells me that Ben is different – he’s not a baby but he’s small like a baby.  All her words and again, true.  “Mommy, Ben is our special boy.”  Yes, even more true.  Then she curls up along his back and plays with his hair and tells him she loves him.

 

She adores him, is his best friend, little sister and protector…

She’s two years old and she knows.

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

Today makes 5!

Selfishly, I look forward to this day for months… it means much more than just turning another year older. It means that we are doing something right. It means that we are making informed decisions regarding his health and livelihood.  Days before his birthday  I panic and fear and worry… he means so much to us; we just want him to have the best quality of life possible.

5th Birthday Party!
5th Birthday Party!

 

Ben is happy. 

He is vibrant.

He is beautiful blue eyes.

He is full of joy and laughter.

He is kicking ass and taking names.

He is changing and overcoming and developing.

He is both human and superhuman. 

He is my definition of unconditional love.

He is five year old perfection.

Happy Birthday Sweet Bug.