Wednesday, September 16, 2015

Birdies & Butterflies 2015

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I always feel so honored when people that have become a big part of Noah's life invite us to events.  And I am so grateful for the opportunity to give those who gave so much love to him and our family a hug in real life.  I was especially excited to meet the Sterner family at their sponsored charity event this year called Birdies and Butterflies.  The Butterfly Fund is not only a foundation that has welcomed Noah with loving and open arms, but their mission is one that is close to my heart as they embrace so many children to help in the special needs community .  It takes a very special person to see a child with a really scary diagnosis, with severe disabilities, and many children that are critically ill and fighting the biggest fight of their lives each day and say I'm going to go the distance for that sweet child and make a big impact in their life.  And that's exactly what The Butterfly Fund does.   But these foundations can't do it alone, it takes a collection of loving hearts and gifts of kindness to financially fuel the lives that The Butterfly Fund can touch and reach. 

Birdies and Butterflies is a yearly golf tournament with a dinner party, awards, silent auction, prizes, putting competition hosted by Madison & Company Properties at the Blackstone Country Club.  Although a tad bit of a drive from home, it was worth every single mile to get there.  You come to the Country Club really at the end of E-470, it sits on a hill overlooking waves of land and newly built homes in the distance.  It's certainly a majestic Club House with lots of fine touches and features.   Noah found a sense of calm as we all sat together enjoying each other's company out on the massive patio deck.  The weather was perfect, a light breeze with a comfortable warmth.  It was the perfect weather for soothing one's soul.  Peaceful and to be in the presence of others - parents and children on the special needs journey and the special family who brought all of us together.  

You always feel this instant amazing connection with other families who know what this feels like to worry about a child that is as medically fragile as a Butterfly.  You can see it in their eyes, you feel it in their smile, and the way they hug to embrace you in an unspoken blanket of comfort and understanding.  It doesn't even matter that our children have a differing diagnosis because we share that universal understanding of just how hard and beautiful this all is. 

The Sterner family - they are remarkable - all of them - right down to little Mia their granddaughter.  She is pure heaven and magic.  A child that is so incredibly tender and loving, I just wanted to bring her home with me.  A family that has devoted so much of their time, talents, love and kindness to move mountains for children and families whom they've never even had a chance to meet.  They are so rare that when you find someone like that on the special needs journey they are like this bright shiny diamond that glitters in all things golden.  Their hearts and intentions are so pure and true.  They are remarkable people.  I could only hope one day to be able to touch lives in the way that they do.  

Noah had the very best time, especially during the auction when he really wanted to participate and raise his hands increasing the bid.  Silly boy - had they honestly counted his waves we would have needed to take out out a second mortgage to bring home all that he was bidding on!  It was truly a funny moment.  Noah clearly has an agenda.  The only thing he declined to bid on was a Manning Bronco's Jersey, which was surprising given he typically loves football.  He must have overheard his dad's big desires at the silent auction items as he drooled past every Avalanche item that was there, as that seemed to be what most interested Noah in the bidding wars. 

A very special surprise and gift however came at the end of the dinner party when Noah's daddy was gifted in the auction with a hockey stick signed by Adam Foote from the Avalanche and a signed hockey puck from
Gabriel Landeskog with opening day tickets.   I haven't seen Noah's daddy be that happy in a very long time.   It was such a beautiful moment, and something so incredibly special and unexpected.  Christmas came early for Noah's daddy.  I don't think he'll ever ask Santa for anything ever again!  

The most rewarding moment of the evening though was spending time with other families and children.  Even though my life is better because Noah is in it, I still feel this huge blessing each time I get to meet another little child with special needs.   The Butterfly Fund does an amazing job of bringing awareness to a disease called Epidermolysis Bullosa - also known
as EB.  I first learned of EB some years ago when my life was touched by the story of a little boy with EB named Tripp.  He was the one who led me to find the work The Butterfly Fund was doing for children with special needs.   Before learning of Tripp's story I had very little knowledge of EB.  It is a lot like Cerebral Palsy in that it comes in different forms and degrees of severity.  However, all of it scary and has the potential to be life-threatening with infections and often secondary conditions that accompany EB's primary diagnosis. 

But it's the spirit in these little bodies.  Have you ever met someone that your soul feels so drawn to?  Someone that you can feel radiates this beautiful energy just by sharing a room with them? I had the pleasure of meeting William who has a very aggressive form of EB.  The event was held in his honor and he is such a precious little boy.  He's very smart and wise beyond his young years.  Having a conversation with him felt like I was opening a gift of wisdom.  He was teaching me, as I'm sure he teaches so many that are blessed enough to have the pleasure to meet him.  A child that has every right to complain about his pain and bodily challenges yet smiles brightly.  And out there on the green you could see him putting and golfing with delight.  He also has the most amazing family.  In fact I adored them.  A tight knit family sticking together and there for each other doing all they can for this little boy.  I wish Noah had that kind of extended family support and care.  It's a really necessary thing when you have a child that is so medically fragile to have as many loving hands and hearts on deck at all times.   William lives in San Antonio, so I'm really hoping that someday that if we can make it back there to visit Morgan's Wonderland which is our big goal and dream that I'll be able to see William and his family again.  You can watch a video about William by clicking here

William painted a very special painting of a "Special Needs Elephant" to be auctioned off.  It made it to a $2,000 bid, but in my mind it was really a priceless piece.  I loved William's explanation of what made his Elephant Special.  You see it was a painting of an African Elephant typically known to be very aggressive in nature, but this Elephant had a demeanor much like that of a kind Asian Elephant which was easy going.  So that is what made it special.   

Please if you have a moment to spare, I wish that you'd pray for a cure for EB, and if you have a chance please show The Butterfly Fund your support.  They are working to help from a great place of love and donations assist them in helping so many children.  To learn more about the The Butterfly Fund and to donate click here.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.