Taking Mobility for Granted

I never considered mobility until I met people who had restrictions with theirs.

I can reach for my coffee, change my position in my chair when my bum falls asleep, go for a walk, dance with my kids, wash my own hair, make the bed, ride a bike, roll over.  I can do it all.

I do it without consideration.  I don’t need to tell my muscles how to do a task; I can simply watch someone else do something and mimic their actions (maybe not break-dancing though!).

I take these freedoms for granted.

Benjamin cannot do any of the above… he can roll from his back to his front, but struggles to move oppositely.  He is learning how to reach with intent but determining what is intentional and what is pure “happy accident” is difficult for an observer.  If he’s outside, he’s in his stroller.  Inside, in his chair.  He can flail himself out of his sleeping chair but cannot put himself back in it.  He can knock toys off his tray but cannot pick them back up (step in Poppy to help!).

Ben has had a Pony Walker for the past year and a  half, introducing a new way for him to move and more importantly, new independence.  While he does not always love going it, the walker provides opportunity for him to get from Point A to Point B without assistance.  And that is awesome.

Now that the snow has melted, Ben is combining one of his not so favourite things.. the walker, with one of his absolutely favourite things, being outside.  Together they create a harmony for him.  Strengthening his leg and core muscles, learning how to “walk” and doing it while being part of an environment he thrives in.

When it comes to pushing Ben’s limits and abilities, it is not so easy to identify motivating factors and we can definitely say that here, we have.

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.

Updates

Seeing as it’s been a while since I posted last, here are some quick updates regarding Benjamin:

Pediatrician – in August we were accepted into the care of Dr. McGonigle and Dr. Chatur; two amazing doctors who specialize in children with disabilities. Dr. McGonigle insists on seeing Benjamin at least once a month regardless of his health as a way of knowing the difference between healthy and sick Ben. Last week alone, we were there Tuesday, Wednesday, Thursday and Friday – Ben’s cold is so bad that they’ve insisted he get his lungs checked daily (and we’re back next Tuesday)… trying hard to avoid a Stollery stay! I’m sure they’re told this all the time but they have changed our lives significantly over the past four months and we appreciate them so much.

GRIT – Ben started a new program in the fall called GRIT (Getting Ready for Inclusion Today). Each weekday afternoon, a staff (Ashley) comes to our house and works on Ben’s development. We also receive support regarding physio and occupational therapy, speech and language, etc. Ben absolutely adores Ashley and through his reaction to her “hello” each day, clearly enjoys working with her.

Through GRIT, Francois and I also try to take advantage of parent groups, seminars and information sessions when we can. Already, I’ve met a few wonderful parents who make me laugh, cry and eat baked goods!

Other “stuff”
- Ben is only required to see his neurologist once a year now instead of twice as he is excelling beyond her expectations
- recently was given an additional diagnosis of Cerebral Palsy. Doesn’t change anything, just opens some new doors
- diapers will be paid for! (Soon!). Yay!
- new equipment on the way – Gecko Standing Frame and Tumbleform Chair.

That’s all I can think of for now, although I’m sure I’ve missed tons!

Time to pull the disability card?

I fight to show and put value in the differences that children with disabilities have that make them so special.

I argue that your child is no different than my child and as such, mine should not be treated differently.

Which is it?

Honestly, I admit it is whatever it needs to be to make the best situation possible for Benjamin. While there are times I feel conflicted over using Benjamin as leverage, I think there is a way to use your child’s disability positively. Francois doesn’t like to use Ben as a tool to manipulate a situation or to spin things to our advantage. I myself believe that what’s best for us as a family is also what’s best for Benjamin.

In a recent situation with the bank, we were struggling to come up with a penalty fee for selling the condo and breaking our mortgage. It was suggested that we explain the Ben “situation” to the bank and relay to them the importance of being in Millwoods and close to my mom for care, etc. That for the type of care he requires, there are only a select few we can leave him with and that logistically we needed to be in Millwoods, therefore living in St. Albert was impossible and in such, the bank should wave the penalty. Ultimately, it didn’t work but it was definitely worth a try. Francois, like I said, doesn’t like to use Ben to gain an upper-hand. I thought exploiting the dire situation of my one in five child to try to save us six thousand dollars was worth it.

Christmas 2009, we were stranded at George Bush International Airport on New Years Eve because our plane wasn’t functioning properly. As we waited for news, the next flight to Edmonton began boarding and with the hopes of maybe getting on stand by… yup, I pulled the disability card. Ben was truthfully running out of formula but could easily last another day. I tried anyway. Over the intercom came the hostesses voice “Anyone on flight whatever willing to give up their seats to a severely handicapped child and their family who need to get home?” That also didn’t work (of course not, it was New Years Eve) but again worth a shot. Instead we spent the night eating at the hotel restaurant and flew first class back home the next morning.

Situations like those; I have no problem using my son’s disability as a tool. I don’t lie or make the situation worse than it is; most people hear one in five and don’t really recover from that.

~~~

I feel Ben is providing an opportunity for our family to educate and show society what disability can really look like and so I also chose to use him that way. Ben looks like a normal child for the most part. Definitely, not like a typical three year old but at a glance, most people wouldn’t even realize how different he is. He is the perfect example of how normal disability can be. With his amazing eyes and contagious laugh, Ben teaches all around him just how wonderful our differences can be.

At the grocery store, we often get stares or giggles from people thinking we’re being cute as we carry him around in his hiking backpack. What they don’t realize is that Ben can actually see better from that angle instead of trying to look up through his stroller and that we carry him like that purposely. It makes shopping trips more enjoyable and more interactive for him (as he slobbers down Francois’ neck and pulls his ears) but it makes me wonder if anyone really questions why we have him in there and Poppy in a stroller.

The kids at my mom’s day home take immense pleasure in playing with Ben and ensuring that he knows they are present. They each individually, take their turns to introduce themselves and to try and make him laugh. They have taken the time to learn what he likes and dislikes, how he interacts best and what type of play actually benefits him. These children, ages 6-10, are better people for being a part of Ben’s life and I am hopeful that they take what they have learned in our homes and translate it into their own world. They now have the opportunity to teach their own peers about disability, perception and accepting others. What can be better? I love that Ben has been a tool in their lives.

People randomly stop and stare at Ben, commenting on his beautiful eyes and of course, following up with the age question. Some people nod and continue on, but others look at us like we’ve misspoken. The best is when they ask if him and Poppy are twins. OPPORTUNITY.

~~~

The word exploitation is extremely negative but I think it’s only a negative action when your intent is to hurt. Ben loves small groups of people, listening for distinct voices and interacting with friends and family. Why would I shield him away instead of sharing him? When we speak on behalf of the Stollery, the intent is to bring attention to the need for funding by showing what it provides for families like ours. The conversations are often focused on the many things he cannot do and the types of support we find there; however, every radio station, media person, Stollery staff we speak to always provide the chance to share the positives and the many accomplishments he has had.

Never will I put Benjamin in a situation where he will suffer, feel discomfort or take verbal abuse. As long as Ben proves to be a willing participant (smiles, laughter, and obvious pleasure) we will continue to use our voice in whatever way necessary whether to educate or fight for something better.

Ponti Cerebellar Hypoplasia Type 3 is the real message, Ben the adorable little boy who gets to deliver it.

We’ll do it again next year!

While attending 1, 2, 3 Go this past spring we were informed of a lodge in Kananaskis that caters to individuals with mobility issues – William Watson Lodge.  The lodge is located in Peter Lougheed Provincial Park and is about a six hour drive from Edmonton.  You can read about it more specifically here:

http://www.williamwatsonlodgesociety.com/index.html

As we were not sure what to expect, we reserved a two bedroom cabin with a fireplace for three nights; our reservation cost us $120 – TOTAL.  $40 a night!

Upon arrival, Francois went to check us in but had to come back to the van to get Benjamin as everything was required to be under his name.  They created a file in his name including his diagnosis and what his mobility concerns are (technically Benjamin should be in a wheelchair by now but because of his size, doesn’t fit! Stroller it is!)  We were impressed that he was needed to check in; there was even a spot for him to sign his name!

Our cabin was fantastic – completely furnished.  Guests are expected to bring everything with them… food, bedding, toiletries, etc.  Dishes, cutlery, pots and pans are provided.

 

I can’t seem to put into words how awesome this place is, so I’ll just highlight some things!

• Gravel road from Peter Lougheed information center to Canmore – interesting!
• Bears like to eat Buffalo Berries.  Bear bears in the presence of Spruce Trees cause Witch’s Broom
• Across the road from William Watson was an ampitheatre in which each night, conservation officers put on shows about things like water, difference between animals, predators, etc.
• Ice cream store at Boulton Creek
• Lower Lake – so pretty!
• All the paths were closed in the park on our last day because there were too many bears!  Scary! Everyone we spoke to saw one, except us!

We will definitely head down again next year, we had such a wonderful time!

Positive Thoughts for Benjamin

Life has been extrememly hectic as of late, I apologize for not being more thorough.

Benjamin turned 3 on the weekend and after putting so much attention on it, I found it hard to sleep Friday night.  Around 6:30 I woke up and quietly touched his cheeks with my lips.. they were warm.  His eyebrows scowled at me, telling me to go away and so I did.  Of course, he chose the one day I was waiting for him to get up, to sleep in.  Typical Benjamin fashion.

We celebrated his birthday early as both sets of grandparents would be out of town for his actual birthday.  All of Ben’s gifts, while “fun” serve a purpose.  A Spiderman bean bag chair as suggested by his physio team to have some place different for him to sit (they did not suggest Spiderman, but it was the theme of his birthday!) and he LOVES it.  He does not always sit in it but instead kicks his feet and makes the styrofoam beans swoosh.  Ben was also given a water table, in hopes of encouraging play in his standing frame (riiiiight!) and an aquarium of little tetra fish.  Ben already understands that “fishies” means tank time!  He demonstrated a love for fish while at his doctors office and we could not help but to act on it.  One day, when they are no longer on back order Ben will also be getting a Lobster Seat from Phil & Ted’s so he can join the rest of us more intimately at meal times.  His birthday(s) were wonderful.

However, we, his parents were unsure what to get him – throughout the year we continually make purchases and ensure that if he is stimulated by something, we have it at home.  This year, I decided to create the event “Positive Thoughts for Benjamin” on Facebook and after two months, finished on his birthday with 877 “attendees” with a few additional non-Facebook users.  The intention was to promote some general awareness around children like Ben through celebrating the achievements he has made and the expectations he has surpassed.  I was incredibly touched by the kind words, thoughts and positive energy sent our way by family, friends and complete strangers.  People can be wonderful and this event was a perfect example of that.

http://www.facebook.com/event.php?eid=176977749030924

 

While Benjamin turning another year older is definitely not the end of his journey, it is evidence that providing as many opportunities as possible and ensuring that your child is receiving the best care available makes a tremendous difference in their lives.

 

Happy Birthday my Bug.  Mommy loves you!

xoxo

 

I leave the door open…

Today is one of those days where I feel I cannot leave the room that the kids are in.  One of those days where I have to pee with the door open.  Benjamin is coughing and the coughing is leading to gagging and the gagging turns into vomitting which when it finally comes to an end, really just means more cleaning for me.

Side note:  We borrowed my parents steam cleaner last year and still have not returned it due to the large amounts of spit up and reflux on my carpet.  In fact, we have used it so much it has actually stopped working and needs to be fixed.  What a pain!

If only Benjamin realized what his cough led to.  Maybe if he were able to learn the consequence of making a mess and had the capability to clean it up himself, he would throw up less often.  I am sure it is even less fun to vomit all day when you are responsible for cleaning it up yourself.

As Ben gets older, I have made peace with the belief that while we have our good days and bad, that the bad days (or at least mediocre days) will become more and more frequent.  It is obvious to both my husband and I that our one true challenge in Ben’s journey is the one labelled “PUKE”.  The likelihood of us asking each other, still mostly asleep, “did he puke?” every night is extremely high, the frequency of late night showers to wash away undigested formula continually increasing and the opportunity to use the bathroom in any capacity with the door closed becoming non-existent.

C’est la vie!

Untitled

When thinking about what to title this blog post, several ideas came to mind:

I Nearly Threw Up, Sick to my Stomach, Panic Attack, He Looked Dead

I am sure you get the point.  On Friday, I experienced the absolute scariest moment of my life.  Ben has a tendency to swing himself backwards playfully…. well, more than a tendency, he does it all the time.  Laughing and with all his force, he will throw himself backwards when he is your arms.  He has done this for as long as I can remember; to him, the “move” is fun and I am sure has a strong effect on his senses.  He loves the motions of being swung around, pretend dropping and twirling circles.

Ben also does not completely understand consequence and as we were walking out our front door on Friday afternoon, he decided to flail himself without warning and smoked his head on the corner of the door frame.  An awful cracking sound echoed. 

Pause.

Still pausing.

Then tears, cries and the saddest sound on the entire planet.  But it only lasted a minute; maybe he did not hit it as hard as I thought and the sound made it seem much worse.  The problem here is that we are not sure how or even if, Ben can identify or recognize pain.  He cannot tell us if he has a headache or his tummy hurts or that he is too warm so when something like this happens, it is a guessing game for us parents.  Benjamin immediately started playing again so I continued with our plans and put him in his car seat.

Twenty minutes later, we were parked and I went around to check on him – out cold.  Ben does not often sleep in the car (or sleep at all, for that matter) but I thought maybe he was just tired and had finally crashed.

Then I called his name.  He did not wake up.  I called it again.  Nothing. When Ben sleeps, it is usually pretty easy to wake him up.  My heart sunk.  I nearly panicked.  He was breathing which obviously was a good sign but he would not respond to my voice.  I tried moving his hands and feet.  Still nothing.  A little shake.  Nothing.  A bigger shake.  NOTHING.  I yelled at him.  And that is when I started feeling sick.  He was completely unresponsive.  I feel nauseous now repeating it.  I shook him harder than I probably should have the third time, but by now I did not care, I just wanted to see his eyes.  Finally his eyes opened and I breathed a sigh of relief but he went right back to sleep after making eye contact.  I woke him again, this time just by calling his name.  His eyes opened and then closed.  Emergency here we come!
Whyte Avenue on a Friday afternoon, not the best road to take but from where I was in coordinance with the hospital, it was the only real option.  Fourteen minutes later, I pulled into the University Hospital emergency area, woke up poor Poppy, threw Ben over my shoulder and in we went.  It was raining which woke him up fully as he was getting soaked (I have never been more thankful for rain!) and he actually laughed.

We were in, through triage and registration in minutes then taken to the Pediatric Emergency section, following the pink bear paws on the ground.  He was checked over by the nurses, then the doctor and then we were told we would have to stay there for four hours.  Twice as long as most patients because of his diagnosis and for fear of internal bleeding.  Four hours seemed like a long time but it was better than having to sedate him for a CT scan.

Fortunately Ben was fine at the end of the four hours and we were allowed to go home.  Watching Ben sit in his car seat, unresponsive, is the single scariest moment of my entire life.  Scarier than initially learning about his diagnosis and scarier than all the “what ifs” we live with daily.  It also reminded me that even though Ben has some typical three-year old wants and needs, he is not a typical three-year old.   As Francois and I laid in bed around two this morning, listening to his pump hiss and him cough… waiting for him to puke, we discussed how not normal our situation is.  I do not know how we make it through the day sometimes! 

From our family to yours – we hope you never experience your child as I experienced mine on Friday.  We wish everyone good health and love; keep your children safe!