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There are times that I really do feel like The Little Old Woman Who Lived in the Shoe. I even call our little house "The Shoe". I am a stay at home mom. I do really think that was my calling. My kids are 13, 10, 10, (yes they are twins) and 5. Our life is an adventure, most times it really is a beautiful adventure.

Wednesday, 9 July 2014

What Would You Do To Save Someone You Love?


    I remember reading this poem in high school.  We were asked what it meant.  I don't remember what I thought that it meant, but I know that it was probably naive.  What could the average teen know about death?  As a mother who has held her dying child in her arms, my response to that question would be very different now.  As he lay there dying, we begged him to fight, to fight with everything.  We willed him to fight hoping that we could empathetically give him our strength, until the end when we verbally gave him permission to leave us, because we knew that we were being selfish, and it was the last act of unconditional love that we could bestow upon our beautiful boy.  If I were asked today what Dylan Thomas meant in his poem, today I would tell you that it is an eloquent fight song.  To me it says when death reaches for you kick, punch and bite until you are free of it's awful clasp.  Just imagine how powerful that fight song could be if it were chanted not by one, not two, but by hundreds?  How could you not gain strength from that?
    Over the past few years I have been reading Facebook updates from Christopher's cousin Ted and his wife Heather.  Growing up Christopher spent many a concert in this duo's company.  The funny thing is that I feel very close to them, and yet have physically only met them once or twice.  Heather seems this hilarious lady (someone that I would make a very dangerous combination with), and Ted funny and empathetic.  They have three beautiful teenaged boys and are very active in their community.  The one of the most striking things about Ted and Heather is their adoration for their nephew Eric.  Eric is Heather's sister's son.  Eric suffers from Duchenne Muscular Dystrophy.
    Duchenne Muscular Dystrophy is an insidious genetic disease that robs mostly little boys of their muscles.  It affects 1 in 4 000 boys.  It is the most common form of Muscular Dystrophy, but also one of the most severe.  Beginning around age 7 - 12 most of these boys are wheelchair bound.  My heart breaks for these boys and their families and the uphill battle that they must face.  Imagine taking all of your prenatal vitamins, taking care of yourself the whole pregnancy doing it all right.  You give birth to a healthy baby boy.  This baby boy hits all of his milestones until around the age where they begin to walk.  Still no need for worry, right, lots of kids are late walkers.  When these little boys do walk often they have enlarged calf muscles.  As pre-schoolers they seem clumsy.  They fall a lot.  They may have difficulty climbing stairs, or getting up from a sitting position.  By the time they are school age many are toe walkers or are walking on the balls of their feet.  They have a wobbly stance and fall often.  This disease can be a genetic trait, but it can also pop up out of no where.  There is nothing that parents could have done to prevent this terrible illness.  At this point in time there is no cure.
    There is currently no cure, but if Ted and Heather have anything to do with it, they will not accept that as an acceptable answer.  Every year Ted and Heather organize "Eric's Amazing Race" a car rally and silent auction.  All of the money they raise from this fun event goes to Jesse's Journey an organization which raises money solely for Muscular Dystrophy research.  Every year there are pictures of Ted and Heather's home filled to the ceiling with items for the silent auction.  They spend hours mapping out routes for the car rally.  There are always pictures of a smiling Eric.  I should note that in the pictures of Eric, he always has this big smile, but more than that an aura of someone who is adored. Children who are loved almost always seem to wear that love, like a cloak of invisibility.  To this point Ted and Heather have raised more than $170, 000 dollars for Muscular Dystrophy research.

    Recently Ted has been posting pictures of this older man in front of a van that reads "Jesse's Journey Grandpa Bob's 4000 Km Walk".   I didn't really pay much attention to it, at first.  You know how you think that your life is so busy (generally it's not, it's just a self induced mental illusion), you just don't have time to look at everything everyone posts.  Every day Ted would post pictures and a few words.  After a little while I became intrigued, o.k. nosey.  What was this all about?  It wasn't really until I noticed pictures titled "Belleville" and "Trenton".  It was at this point that I truly felt disappointed in myself.  If I'd paid some attention I could have gone and seen this "Grandpa Bob" and seen Ted.  From that time forward I have been reading Ted's posts and each post I become more impressed.  Ted is a wonderful writer.  I came to find out that Ted was not just posting Grandpa Bob's progress, but was there with him for much of the journey.  I find that I have become emotionally invested in this journey.
    "Grandpa Bob" is actually Bob Facca.  He's a 65 year old grandfather from London, Ontario.  Bob is running for his 6 year old grandson Louie.  Louie as you may have guessed has Duchenne Muscular Dystrophy.  Bob is planning to walk 4000 km to raise awareness and research funds.  At this point he and his team of amazing and dedicated volunteers have raised $18, 547.86 for research.  What an amazing man.  How could Louie not gain strength from that kind of love?  How could Louie's poor parents who must be living a nightmare not take strength from their father's devotion?

    I hope that Ted does not mind, but I have stolen some of his updates and pictures.  I warn you, Ted is a really inspirational writer, and he will make you want to join in this amazing cause.

Day 4 - The Calm Before the Storm?

Today was good. Relatively quiet, but good. It began at McDonald's in Port Hope where the staff were so moved by Bob's story that they begged us to come back on Thursday when the HWY 2 portion of the trip resumes. Grandpa Bob worked the restaurant while Grandpa John greeted people in the drive thru.
At the starting point we welcomed Bob's cousin Glen who will be spending the week with the team. He fit in immediately with his willingness to do whatever it takes to make this big wheel turn.

As we headed north on HWY 28 toward Peterborough the blue sky began to show signs of cloudy grey, and a mugginess prevailed. Because this portion of the walk was through a quiet rural highway passersby on foot became very infrequent, while transport trucks and commuters were constant. The sound of supportive horns was welcome background music. In this environment the traveller who makes the extra effort to stop on the shoulder and get out of their car to greet us is recognized with extra warmth and gratitude.. We are happy to say this happened several times as we walked northward past Rice Lake into a town called Bailieborough where once again a generous strawberry farm owner provided us with a quart of her finest strawberries.
The day ended with dinner at an Italian restaurant compliments of Grandpa Bob, and the night was punctuated with a series of unsolicited donations from supportive patrons and the visibly moved restaurant owner.
Back in our rooms we prepare for tomorrow as we listen to the rain fall outside our window. We have had a run of great weather, but according to the Weather Network (Grandpa Bob's Walk for Louie Sponsor plug) heavy rain and potential severe weather may be coming our way. Tomorrow our uniform of white Grandpa Bob 4000 KM Walk for Louie T-Shirts may be covered by clear rain ponchos as we finish the Peterborough leg of our journey, or the good fortune that has shone on this trip for over 800 kms and $480,000 in DMD research donations will continue, and the storm will pass us by. We can accept either because Grandpa Bob's focus is way too strong to let a little rain slow him down.

Grandpa Bob's Walk for Louie Day One

Today is what people would describe as a postcard day. There was not a cloud in the sky, and the demeanour of the people we encountered reflected the beautiful weather. Friendly greetings, smiles, waves and genuine curiosity added to everything positive.
Our entourage left the motel at 7am and after a brief breakfast at McDonald's Bob's 37th 20 km walk since May 12th began. Some highlights of the day included:
As we walked by the Trenton Air Force Base toward downtown a Canadian soldier approached our group on foot. He had driven past us and was curious about the Walk for Louie and Jesse's Journey so once he parked his car he headed back toward us to find out more. He probably walked about a kilometre and across four lanes of traffic to speak to us. Once Bob and the group explained our mission to fund research for a cure for Duchenne muscular dystrophy he gave us a donation and with a tear in his eye gave Bob a hug. Powerful stuff!
A hydro service worker working along the roadside stopped us and gave us a donation. When our group thanked him he emphatically said; no, thank you! More tears.
When we returned to the motel at the end of the day Grandpa Bob's road manager received a phone call from a Trenton resident who saw our convoy along Old Lakeshore Road. She was moved by Bob's dedication so to show us her appreciation she is going to deliver sandwiches, potato salad, homemade cookies and drinks tonight for tomorrow's lunch. Nice is not a strong enough word. People's generosity knows no bounds.
All of this combined with the majestic Quinte West countryside, and the sparkling Lake Ontario panorama made for a very memorable and moving first day.
Defeat Duchenne! Change Lives! No Bad Days!

No bad days. How true it is when we are able to put life in the proper perspective. This motto was inspired by Grandpa Bob's son Rob; Louie's father. It has become the family creed. Our team had the pleasure of meeting this beautiful family today. What energy; simply boundless and fortunately we will get to see them again tomorrow as we travel through Burlington.

Several years ago we had the pleasure of meeting Jesse's Journey founder John Davidson at the first annual Eric's Amazing Race. He drove in from London and spoke to the people who attended and asked us to look in the mirror and ask ourselves what really mattered. These became words to live by. Here are some memories from today that really matter...

Hamilton Deputy Fire Chief Dave presented Bob with an official Hamilton Fire Department hat to wear proudly as he walked through the region. His words were "We would be honoured to have you wear this hat." That respect really matters.

My friend Patte reached out to me to find out what kind of shoes Bob wore and what his shoe size was. This morning before today's walk began she came to the Freelton fire station and presented Bob with a pair of brand new Saucony shoes from Foot Tools; the Burlington store she manages. To see Bob proudly clutching those shoes you just knew this gesture really mattered.

At the mid point of our day Bob was resting and much to his surprise his son Rob and family arrived from Kalamazoo, Michigan. This was my first opportunity to meet Louie, who Bob refers to as the real star of the show. To Bob nothing matters more than his family, and he is walking 4000 kilometres to show everyone.

During our noon lunch break Bob was interviewed by CHTV for their News at Noon program. During the interview Bob was asked about what he has taken from the walk. He spoke passionately about the immense support and generosity he has received since he left Quebec City on May 12th, 1080 kilometres ago. He said he was overwhelmed as he placed his hand on his chest and then he looked over at Louie who was standing nearby. He was choked up because once again he knew how much this walk really mattered. Not just or Louie, but for thousands of boys like him.

How far would you go for someone you love? The answer to that question will reveal to you what really matters.

    "Do Not Go Gentle Into That Good Light", we will not let you, we forbid it.  Although right now there is no cure for this terrible disease, with amazingly devoted individuals like this there must be a cure or treatment near.  As a matter of fact the FDA has set an approval path for a new muscle disorder drug.  I can only imagine how powerful that kind of love must feel to those parents and those children.  The amount of money raised is powerful, but the love raised, now that is priceless!

    If you would like to support this amazing cause you can do so by
 texting "BOB" to 45678
 or by visiting

    Thank you "Grandpa Bob" for your devotion, thank you Ted and Heather Lindsay for being such inspirations!

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