Tag Archives: family

World Rare Disease Day 2015

CARE ABOUT RARE

Ever wished you could do something to show you care about rare?  To spread awareness and provide opportunities for education?  Today is that day!  And it’s ridiculously easy!

Wear BLUE JEANS!  When someone tells you how hot you look – tell them why you’re wearing them.
Because you know someone living with a rare disease.

When someone else is wearing blue jeans, ask them if they care about rare?
If they don’t know what you’re talking about – let them know that just by wearing jeans on February 28th, they too can spread awareness.

Whether you know someone affected by a rare disease or know someone through a grapevine of connections or read an interesting blog on an individual – it’s all the same.
It’s about spreading the word.
We all have blue jeans.
We all wear them.
So why not promote a great cause at the same time?

BLUE JEANS FOR RARE GENES!

I love to see the pictures of everyone celebrating today – please find me on Instagram @k_haller and tag me or on FB!

I appreciate everyone’s support in showing the world just how beautiful rare is!

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Catching Up

It’s been a while since I’ve posted – almost four months which in the life of a Bug is eternity.  In the case of my Bug, not so much but still much as happened.

  • Ben qualified for Nurse Next Door and has been doing really well.  He now gets to sleep within his own patterns and lives without two frustrated parents wishing him back to sleep.  He has two lovely night nurses who cross their fingers that he sleeps through the night but if he doesn’t, happily play, feed or settle him.  When Ben falls asleep at 6:00 p.m. we no longer panic to keep him awake in fear of sleepless nights and instead he gets to sleep when he needs it.  
  • My mom became Ben’s official Development Specialist with GRIT.  After lots of list making, pros and cons considering and thought sharing, we decided to keep Ben in GRIT as we feel his specialists have great ideas and suggestions for Ben’s development.  We decided that school was (or is for the time being) not the best environment for him, that restricting his programming to three crammed hours was actually hindering his development and some other things that don’t need to be publicly shared were not in Ben’s best interest.  Since changing the way he is presented opportunities – time of day, interaction, and really following Ben’s lead he has progressed tremendously.  He has demonstrated an increased interested in his standing frame, started reaching and removing things from buckets – moving them into new places and even testing out food again.  (thanks Mom!)
  • He has gained weight.  His doctor actually stated that he didn’t need to weigh him last appointment because he was looking round.  Yah right!  But the sentiment is nice!
  • He has increased his daily intake by almost a full 8oz (a bottle!).  I actually had to call Home Nutrition and ask for an increase in formula!
  • He is starting to move his arm as if to wave when you say good bye.
  • AND his vocabulary/sound making has become much more expressive.   
  • Lastly, we purchased a new piece of equipment that we received on Thursday – the GoTo Seat from FireFly and Ben appears to really enjoy sitting in it.  We’ll see if there’s a “honey moon period” with it but so far, so good.

    I think that’s it… for now!

    xoxo

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Concerns regarding FSCD funding process – a letter to MLA’s in the disability sector

Good morning!

I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son.  We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.

Our son Benjamin has a rare neurological disorder called Ponto Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping.  I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night.  In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues.  For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out.  I feel we have made a good run at trying to do it ourselves.  But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up  since one in the morning and we’re tired.  We try our best to be patient and accommodate him but for lack of better word – we’re pooped.  This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.

However – FSCD will not approve the funding needed which I do not understand.  How is my child not considered as valuable as they funding requested?

I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days.  How is that not worth what we’re asking for?
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.

Thank you for your time and consideration.

Regards,

Kristi Hall-Busque

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.

A True Once in a Lifetime Experience

The Make a Wish experience has far surpassed any expectations we ever considered.  If not for Francois’ cousins suggesting we apply, this past week would never have happened. We learned so much not only about Benjamin, but ourselves and of the people we were so fortunate to meet along this journey.

We left for Jamaica last Thursday with a sense of uncertainty; Benjamin was sick for the first time in months and we knew that the plane ride would only add to his congestion.  Though unsure how the week would inevitably go, we were also optimistic and excited to see what was to come.

Firstly, the customer service and assistance from West Jet was unmatched on all four legs of our trip to and from Jamaica.  The staff were helpful and we had staff greet us, take us through customs and security and escort us to our next gate.  We were also given the privilege of hanging out with the pilots and staff on both our plane ride from Montego Bay back to Toronto (sorry for Avery’s question about going #2 on airplanes) and then Toronto to Edmonton.  We are extremely grateful to the airline for its compassion and partnership with Make A Wish; they made our journey much more comfortable and stress free.

Our resort, Beaches Ocho Rios was lovely… with it being the quiet season (aka kids returning to school and hurricanes), we estimate that there were only about one hundred other guests.  Each night, there was a Sesame Street show which included opportunities to interact with various characters and throughout the day, characters wandered through the resort to say hello.  There are also tons of opportunities to do special activities with the “kids”; Poppy started calling them her “kids” mid-week.  We took part in an All Access Photo Shoot with most of the characters which Benjamin loved.  The staff in costume were so incredibly kind and made a clear, obvious effort to include Ben in their hugs, high fives and hair tousles.  Ben, Poppy and even Avery enjoyed hanging out with the Sesame Street crew.  Avery even got to sing in a talent show!

Leaving for Jamaica, we were excited that Ben would get to hang out with Elmo but we never imagined just how he would react to the opportunity to swim.  We know Ben loves to splash and play in the water, but as mentioned so many times before, each time we take him to swim, whether it be at the lake in forty degree weather or an indoor pool, he gets sick.  Without fail.  However, as the water and air temperature are close in range in Jamaica (and we figured he was already sick, so what did it matter), Ben spent time in the pool area each day.  The smile on his face and laughter were unlike anything we have experienced with him before.  It was far better than anything we could have dreamt for him.  We took him on small waterslides and watched him go ballistic as we splashed down into the water.  Francois even managed to video tape him a couple of times so we can share it with our family.  It was both inspiring and heart breaking; we so wish we could provide that same opportunity for him here (or make millions of dollars so we could afford to go more often!).  I am not sure there are even words to describe the overwhelming love and adoration we have for Ben and then to see him like that, made everything feel more complete.  It truly was his “once in a lifetime” opportunity and he absolutely, without a doubt, had the time of his life.

The staff at the resort were incredible and I know that people will say that, that’s just their job however, I disagree.  The staff at Beaches went above and beyond to make sure we were comfortable at all times.  We especially would like to thank our concierge Renae, our breakfast and lunch hostesses Susan, Gracelyn and Juanita and our waiter at the Venetian, Carlos – we know you felt something for our Ben and we felt it too; thank you for loving him the moment you held him.

I don’t know what else I can say about Ben’s Make A Wish trip other than it was wonderful.

Thank you to our Make A Wish team – Aissa, Lauren and Katherine for taking us on this amazing journey and all your support in preparing for it.  And a sincerest thank you to Packers Plus, the company that sponsored Ben’s wish.  We will be forever grateful.

 

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Music to his ears

On the long weekend, we were honored with tickets to the Edmonton Symphony Orchestra’s Symphony Under the Sky event in Hawrelak Park.  It was set up by one of our Wish Granters from Make a Wish, Katherine,  and turned out to be an absolutely amazing experience.

We are never quite sure how Ben will manage in large group settings but as always, he blew us away.  When the music started – Benjamin went still and would listen intently.  For nearly two hours both Sunday and Monday, he sat pretty still, listening to the ESO perform a variety of songs and melodies. Francois and I both noticed when Ben recognized a song, as he perked up a little higher and his movements settled.  It was truly eye opening for us and proves, as in history, just how good music is for the soul.

Thank you so much to Mike from the ESO for allowing us to attend such an incredible event as your guests!

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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First Fan Mail I’ve Written

I feel slightly ridiculous in writing a letter to a musician.  However, I also felt that sometimes it’s nice to share when someone has such an impact on Benjamin.

Please excuse the poor writing of this email as I have never contacted someone in the public as this.  My husband and I would like to express gratitude for the past two albums you have released as they have greatly impacted our lives.
My son was born in 2008 with a disorder called Ponti Cerebellar Hypoplasia Type 3 (don’t bother to look it up, it’s depressing!) and within that, it is often difficult to determine what is of value of him and more importantly, makes him happy.  A few years ago, we attended David Gray’s concert in Edmonton in which you opened for him.  We purchased ‘The Waiting” after your performance and immediately found that our son, Ben, loves the sound of your voice and the music of your songs.  He also really enjoys ‘We Were Born to Glory’.  This is extremely significant to us as the only other music he loves as much as yours is Elmo and Sharon, Lois and Bram (tough competition!).  For the past three weeks, we traveled around the USA and we were worried how he would handle the crazy hours and constant traffic of people; fortunately I had your songs on my phone and was able to play it for him (on repeat…. for hours).  We also put him to bed with music that settles him and your discs remain in the rotation only with the above mentioned others.  🙂
Although it seems like such a little thing, I can ensure that listening to Elmo for hours at a time would have been torture for everyone else in the car; thank you for saving all of us from that nightmare.  More importantly, thank you for creating music that my son loves and identifies instantly.
We all look forward to future releases and hopefully a new disc to add to our collection.

Gratefully yours

And I pressed send…. even though I still felt silly.  🙂

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”