I am starting to feel like my old self again.  Well, not exactly me, more like post-ALS me.  But I'll take it!  It has been almost a month since Travis and I returned from my brother's "Celebration of Life" service in St. Maarten.  And I've been sick in bed for 3 of the almost 4 weeks.  I did end up in hospital, fortunately it was due to a virus that was not bacterial.  No, I did not catch the Zika Virus from the Caribbean!  For sure it is due to the nightmare of getting home, which, if you are interested I have documented in a letter to American Airlines (click on "Read More" below).  I have yet to hear back from them, but I'm not really expecting much to tell you the truth.  I'm just so happy to be in communication again, so please don't feel neglected, but the past 2 months have been unbelievably difficult.  Now that I am out of bed again, I am hopeful that the spring weather will not only bring us sunshine, but more positivity in our lives (as much as you can have positivity while living with a terminal illness).  The blessings have already begun as we will embrace a new niece this summer from Luke & Joy and of course I am so excited to be hosting a baby shower with my friend Krystle for Brittany & Sean's summer arrival!

Travis has been busy working on accessibility in the apartment for me.  He installed a grab bar onto the balcony so I can enjoy some sun while he is at work, as well as a toilet riser with handles.  This blog is not only a diary of my gratitude for the love and support in my life, but also a truth to what I'm living with so I will admit that yes, I have fallen off the toilet (and yes, giggles are appropriate).  Hopefully, these additions will keep me as independent as I possibly can be.  

Travis & I head to Toronto on Thursday as I am continuing with my advocacy efforts by giving a speech at the ​ALS Canada Research Forum.  I am totally stressing as I haven't written anything yet and I'm running out of time!  Of course, I am procrastinating by writing this blog instead of my speech.  Wish me luck, I'd better go get to work!

It's that time again!  I am recruiting for the 2016 Ottawa Walk for ALS on June 11 at the Canadian War Museum.  If you would like to have a great time with the "Living Loving Laughing Walkers"  please click on the link below to sign up or donate!

​"I am pleased to be the National Honorary Spokesperson for the WALK for ALS, to draw attention to the ALS cause and to have the opportunity to make a difference," said Bélanger, speaking through an assistive device. "I call on everyone to join me and to participate in a WALK in their community, so that support for people living with ALS is available today, and critical research is funded, providing hope for the future."
 
Six months ago, Liberal MP Mauril Bélanger was running in the federal election, continuing his dedication of over 20 years to serving his constituents in the riding of Ottawa-Vanier. His life changed November 2015, when he was diagnosed with the terminal disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's. Although ALS has taken away his ability to speak, it has not taken away his voice or commitment to help others. Bélanger is refocusing his energy, partnering with the ALS Societies across Canada and taking on the role as the National Honorary Spokesperson for the WALK for ALS.

 With a goal of $4 million, the WALK for ALS will be held in 93 communities across Canada. 60% of the proceeds will be used to assist people living with ALS and their families, and 40% of the proceeds fund the ALS Canada Research Program.

"The ALS Societies fulfill a critical role when a person is faced with the realities of a diagnosis of ALS, which impacts the entire family," explains Catherine Bélanger, wife of Mr. Bélanger, "It means a lot to our family to be able to help the ALS Community through our support for the WALK for ALS."
 
To join Mr. Bélanger, and the 3000 other Canadians like him, in his fight against ALS, register for one of the 93 WALK for ALS events taking place across the country at www.walkforals.ca. 
   
About ALS
ALS is a neurodegenerative disease where the motor neurons that control your muscles die. The 'living wires' which connect your brain to your muscles degenerate, leading to a loss of mobility and speech and eventually impact the ability to breathe. ALS is terminal, there is no cure or an effective treatment. In Canada, approx. 2500-3000 people are living with ALS; 1000 will succumb to the disease and 1000 will be newly diagnosed each year. The lifespan after diagnosis is on average two to five years.
 
About Mauril Bélanger
Mauril Bélanger was born and raised in the town of Mattawa, in mid-north Ontario. He obtained a Bachelor of Arts from the University of Ottawa. First elected to the House of Commons as Member of Parliament for Ottawa-Vanier in a by-election in February 1995, Mauril has been re-elected at every election since. He and his wife Catherine live in Ottawa.

It is with complete heartache to write this blog to announce the passing of my brother Don.  I've tried to write this several times, and have given up, as in truth I feel I cannot do my big brother justice.  At least I'll try.

On Sunday March 20th, 2016 Don had a heart attack.  He was on a boat with friends in the Caribbean in the sunshine and I am relieved that he wasn't alone.  He went swimming that day, and even helped to raise the anchor.  It happened very fast.  I think to myself, we should all be so lucky.

That day I happened to be in Montebello with Travis, my parents, Keith & Tania, and my niece and nephew Kate & Malcolm.  There is a picture below of us taking a "Don style" picture for him as we toasted and missed him.  We had no idea that the picture was taken within an hour of his death.  If you study the picture, it is kind of amazing.  My family and I had a beautiful French dinner together.  As we went back to our rooms in the hotel, it was then that we found out.  Of course the news is devestating and unbelievable.  We were in shock and tears.  It was the first time the eight of us had been together in 3 years, and it was for one night only. 

My parents immediately made plans to fly to St. Maarten.  I was fortunate to have Keith, Tania, Kate & Malcolm stay with me for the following week, as we planned for Don's Celebration of Life, grieved together, and supported each other.  We engaged in activities with my niece and nephew, which helped us to somehow keep going.  One of the most emotional and lovely moments was when Dr. Soc, the DJ from St. Maarten's local radio station Island 92, played a 4 hour tribute in honour of Don.  Not only did he play Don's favourite music, including requests from us directly, after every break he spoke of Don and his character.  I have included the link below and encourage you to play it, it is an amazing playlist.  It is such a gift to have this tribute to Don, I listen to it often.  I have also included photos of Don on my gallery page, if you listen to the musical tribute and play the slideshow, you will be moved to tears.

It was beyond difficult to be in St. Maarten without Don.  It helped so much to have Sue & Wendy join us to celebrate Don and be there for us in St. Maarten.  Everywhere we went, people knew Don.  

Don's Celebration of Life was beautifully organized.  Thank you so much to Olga who is Don's St. Maarten sister who stayed in contact with us and was there whenever we needed her.  She worked so hard on Don's behalf to make all of the arrangements.  Thank you as well to Arun and Aarti who stood by Don and helped to plan this beautiful service.

Keith did an incredible job of speaking and introducing those who wanted to speak about Don.  It was so painful and so beautiful at the same time.  Jordan did a beautiful job with a slideshow of Don's life.  There were hundreds of people who turned up, from Don's AMA family in St. Maarten and Antigua, to taxi drivers, to our great friends Travis & Ana, to jewelry store competitors, to hotel staff, to tourists who flew specifically to St. Maarten to honour Don, to someone who had reached 6 months sobriety who Don was helping that none of us knew about, and of course many more.  Don was known for his generosity of spirit, for his silly jokes and for his appreciation of the moment.  He was so grateful for a kind word or even a bag of coffee, like it was the best thing in the world.  Which is ironic as he never stopped giving, from incredible gifts to his family, to Travis & I who could never fully repay his generosity with his gift of Sandals for our 5 year anniversary, to free hugs, to St. Maarten bracelets and keychains to everyone he met.  Of course to him generosity to others was no big deal.  Don overcame so much in his life and we are so so proud of him.

I know how much Don loved me and that he would do anything for me, I just hope he knows how much I love him and how much I miss him.