Thursday, July 28, 2016

Never Give Up The Fight!!!






We're sitting on a plane, 35,000 feet in the air, making our way to the most beautiful place in America, the Northeast Kingdom of Vermont.

This is our annual pilgrimage, where we trek across the country and visit the majestic land where Suzette was raised.  It is a big trip for our family.  Up at "Dark-O-Thirty", in a car, baggage check, through security, on a plane, deplane, on another plane and in another car.  We usually get to our final destination 18 hours after our initial departure. Despite it all, this trip is always worth it.  We step away from work, school, chores, soccer, traffic and spend our time with family and friends in God's country.

This pilgrimage is one of the ways that I've measured the time span of our family.  First, it was just the two of us.  Then +1 little one, +2, +3 and now we are +4.  From flight delays and diversions, to getting kids through security, an angry co-passenger who couldn't understand why an 18 month old might cry, to keeping everyone busy and fed... we've seen and done it all on these trips.

This year, the trip is a little different.  The trek through the airport, from the counter, through security to the gate and to our connecting flight is a lot of walking.  Suzette and I talked about it ahead of time and decided that we would go ahead and get a wheelchair for Maya.  We didn't really discuss why, but things have progressed to the point where walking long distances is so very difficult for her.  She had recently used a wheelchair at Disneyland, which was a very difficult milestone for all involved, but it was the right decision and it worked out.

So, as Maya and I were making our way to the car this morning, I asked her if she and mommy had talked about using a wheelchair at the airport.  It is hard to describe, but Maya stopped in her tracks, looked me dead in the eye and with every ounce of her soul, she calmly but unequivocally said, "I want to walk".

And there it was... the Fight that is Maya.  The Fight that reminds us that although Maya's physical body is not doing well, her spirit is strong, and her will is unbroken.



--
Earlier this week, I received a call from one of the largest companies in town and they had heard about #FightingForMaya. I was told that their new CEO had selected Maya's story and the #FightingForMaya campaign as a story he wanted to share during his first company wide meeting.  He wanted to share a story with his employees about the impact their work was having on the lives of so many dealing with rare diseases and how hard families and communities are fighting for the lives of their loved ones.  I was truly humbled.

During the 24hrs after the initial call with the company, we scrambled to provide them with #FightingForMaya t-shirts and we discussed logistics.  At some point, I received an email from the company with the subject line "[Company X] is #FightingForMaya" and it hit me like a ton of bricks.
Yes, we have done so much in a short amount of time, and no, this wasn't the first company to come forward and join the fight, but now... at this point in time, it is so clear that this project is going to make a difference. That Maya's fight, and your support are going to make the difference... not just for Maya, but for so many impacted by this and too many other rare diseases.

So this Friday, as you pull on your #FightingForMaya t-shirts, please know that Maya is still fighting, know that our message is reaching the right ears and know that we are making a difference.

www.fightingformaya.com


Updated with a picture of the Illumina executive team.





11 comments:

  1. Hi! Very moving. You are all in my thoughts. Would you mind posting the link to tshirts again please? Thank you!

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  2. Thank you. We appreciate it. Here is the link for shirts and to the website in general. https://www.booster.com/fighting4maya

    www.fightingformaya.com

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  3. Beau, Aurora has been wearing her tshirt every Friday and sharing the stories about Maya; I have been more adult and so more shy about the whole thing though believe me our hearts are all with you. I am commenting because we shall be in Glover today; Aurora is at a summer camp at the Old Stone House and Jim is working with Thurmond Knight, luthier, by Shadow Lake- anyway if you happen to see a pair of black tshirts know we are there and prayers are always with Maya and your family. -Rachel, Martin's granddaughter.

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    1. Rachel, thank you. Please thank Aurora and I totally understand about being more adult and shy. I will say there is nothing like seeing someone uou don't know wearing the shirt. It's a great boost. I hope we see them and thank you and your family for supporting #FightingForMaya.

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  4. Andrea CarpentierJuly 30, 2016 at 4:57 PM

    Beau, you have many gifts. Your beautiful writing has invited us a along for your journey. I'm so happy I got to see you and your family today. I'll continue to follow Maya's progress and send strength to you all.

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    1. Andrea, yes it was great to see you today. As always, thank you for supporting us and Maya along this journey.

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    2. Andrea, yes it was great to see you today. As always, thank you for supporting us and Maya along this journey.

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  5. What a journey Beau and what a display of incredible spirit, determination and love from you all - with Maya lighting the way. Just recently heard of this news and with an almost 16 yr old daughter myself my heart ached deeply for what you are all going through. I will do my part in at least spreading the word and praying .... Thinking if you all - God bless #fightingformaya

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