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