I often wish that SMA had never entered my life, that I never knew any of this pain, that I didn't have to face any of this. And as often as I so wish I could wipe my SMA slate clean, in all of this, I have met some of the most incredible people that I have ever known. People who have faced enormous loss, perhaps the most devastating anyone can ever face, and the way in which they choose to live, react, and process it all is nothing short of heroic. This type of pain can do all sorts of things to people and, while a variety of reactions are understandable, they are not always positive. Bill and I have always believed that while we can not control this situation, we do have a choice in how we deal with it, how we carry on, how we live. And that choice is truly powerful — life changing. Bill and I are continually drawn toward the people who make the choice to turn their grief into tangible change — even when it is enormously painful.
One family doing just that — and with incredible grace and honesty — is the Webster family: Kendra, Ryan, and baby Makenzie. I came across the Webster family blog when they were first diagnosed with SMA. I don't remember if I left a comment or not, but my heart broke as I read their honest devastation and shock. That initial SMA diagnosis turned out not to be entirely correct and as Makenzie's respiratory health quickly declined, she was soon diagnosed with an SMA variation — SMARD or Spinal Muscular Atrophy with Respiratory Distress. Makenzie passed away on December 13th, 5 days shy of her 5 month birthday. Makenzie should have turned one this July and Kendra had a big party in mind while she was still pregnant with their sweet little bundle — a party filled with fairies and color and laughter and life! After losing Makenzie, the Websters decided they still wanted to have that party — a party to celebrate their beautiful daughter's life…a party to honor their little girl…a party to create hope for future families impacted by this devastating disease. And so the Websters created the incredible Live, Laugh, Breathe Event with the goal of raising $10,000 for SMA research. And we are beyond honored that they want all proceeds to go to GSF.
This celebration is shaping up to be an out of this world, super cool, magnificent day of family fun and Kendra and Ryan are working extremely hard to pull it all together. The confirmed entertainment includes an obstacle course, a unicycle team performance, a magic show, a bounce house, face painting, a silent auction with awesome items, a live band, and belly dancers! There will also be food and much, much more.
- Date:Saturday, July 17, 2010
- Time:3:00pm – 8:00pm-ish
- Location:Shepard Park
- Street:760 W Shepard Lane
- City/Town:Farmington, Utah
Kendra continues to take my breathe away in the honest way she shares her grief. Her posts are heartbreaking, compelling…sometimes funny…but always admirable. She is pushing herself so much to host this event and she is doing it with so much courage, strength and bravery.
july 18 2009 was perfect.
she came to us.
she opened her eyes, she took her first breath.
my world stopped.
everything changed.
she was my reason.
before she was even born i was planning trips, play dates, outings, summer parties, winter parties, birthday parties. i was going to have the perfect outfit for her. i was going to make sure she had a blast and it was something she would remember for a lifetime.she lived 4 months 3 weeks and 4 days.during her life it was a party everyday for me.i celebrated every second of her life.
we had 1 month birthday parties, we had park days, we had spa days.it just wasn't enough for an entire lifetime.
i need more.
while our muffin is dancing in heaven
on July 17th 2010 we will be here celebrating her life.
all 4 months, 3 weeks and 4 days of it.
we are giving her a 1st birthday party.
complete with the fairy theme i imagined.
and
You are ALL invited.
If you are in the Utah area — you DO NOT want to miss Makenzie's Live, Laugh, Breathe Event!!! And if you aren't in the area, please share with others, send Kendra a note of encouragement, post this on your facebook, tweet about it, help spread the word about this very special little life and her very special celebration!
Click here to visit the MRW Live, Laugh, Breathe blog.