HopeKids is a non-profit organization that opened up a fourth chapter
in Colorado in February of this year. HopeKids offers ongoing event
opportunities, that are free of charge, for families like ours with a
child that is facing a life-threatening medical condition.
Their main mission is hope. To give us hope that things will be easier
or better tomorrow. Hope that we won't forget the true heart of our
family and get lost in days of endless therapies and appointments, to
give us hope that we're cared about, loved and
thought of. Hope that reminds us that when we're fueled with kindness
and happy times we are all stronger on the special needs journey.
Although Noah has been a HopeKid for several months, we weren't able to
accept an event invite until the end of July.
I thought it was fitting that it was a Christian Concert event to
Hillsong United with Lauren Daigle. The invite hit my inbox early on a
Monday morning, typically I'd assume it was an impossibility for us to
coordinate anything on short notice... Noah needing
to have dinner at a certain time and getting his dad to be on time home
from work. And then there are always the big things in the back of my
mind. Can Noah handle it sensory wise? Will it overwhelm him? Will he
have difficulties? Will he hate it? Will
we have to leave early?
But there was something nudging me as if I had an angel
whispering in my ear. Accept the invitation. Make it possible. Go -
you need to go.
Chris felt confident he'd be off work in time and I coordinated an
easy dinner that still would allow us to get there in time. Neither
Noah or Luke had ever been to a concert before. I wasn't sure what
either of them would think of it, but knowing that
Noah has had a love for Christian music since he was born and still to
this day insists that the radio be on K-Love when he's in the vehicle, I
thought our chances might be pretty good that he'd at least enjoy
himself a little once he figured out what it was.
We picked up our tickets that were waiting for us at will-call for
club accessible seating. The view was spectacular. The music loud but
with a powerful message that felt as if it sent a gentle boom through
your bloodstream. Music mixed with worship and
prayer. Certainly things that were said that hit a soft spot in my
heart as if God was trying to speak directly to me and using this
concert to do so. There are simply days when I feel abandoned by the
world. Each and every single person. Putting on a brave
face and going it alone with a severely disabled child and his sibling
in tow. No parachute, no net to catch me if I fall, no helping hand to
lift me up. Just me. Each and every day. Yet, here is this person
standing in a middle of bright concert lighting
reminding me God was there in the beginning, he will be there in the
end, but you need to remember he is also with you now in the middle.
And all the while it may feel like humanity has turned its back on our
family unit because we have a child that is
so different and so severely neurologically impaired - God will not.
He will be faithful even when we feel He is absent. He is silently
there.
That's the really beautiful mission that HopeKids has is to give
families hope, love, support and encouragement. They include the entire
family unit, even siblings and often extended family members to attend
supporting events, movie premiers, community
invitations, concerts and so much more. It also gives us a way to be
with other families like ours, to embrace each other, and to celebrate
joys that we otherwise wouldn't get to experience. I love that they are
based in God's faith in their mission. And
that they "cling to the promise that “Hope does not disappoint.”
(Romans 5:5)"
I sat and watched Noah so excited and eager to express how he was
feeling that his head came forward in an attempt to be engaged and try
as hard as he could to activate his body to work in his favor
.
His arms and legs waiving simultaneously with his laughter. He was
having the very best time, his little brother equally excited and in
awe of the lights and music and majesty of the visual effects. We
watched this beautiful horse running in a black
and white print during a song. An image that felt serene, peaceful,
and whole. Grace in it's rawest form. Almost as if it were a visual
meditation and reflection designed to bring you back to the center of
what really matters.
It served as a reminder that all the noise around us is a
distraction from what we should truly be focused on, the blessings that
we have in each and everyday. That God grants us the gift - the biggest
gift of all of waking up another day with Noah
here with us.
When you have a child like Noah you understand
that tomorrow is never promised. And it doesn't matter if SSI or
Medicaid or his CES Waiver or his DME vendor is doing their best to
cause me distress. Those are all distractions from
the real beauty of this journey with Noah. Noah himself. God wants me
to put those things on the back burner so I don't burn out my flame,
renew our family's emotional resources and grow stronger so we can go
the distance together. HopeKids is helping us
do just that. Serving to be the fuel we need to help us get through
the next storm while giving us the rainbow to look forward to at the
end.
I'm really excited about future events and hope that some will be an
excellent match for Noah. He can be a bit tricky with outdoor events
since he can't regulate body temperature, and has such bad sensory
processing disorder that accompanies his primary
diagnosis. While Noah did great at the concert he did try to gag and
vomit repeatedly when he realized we had to stand in line to gain entry
to the event center. We left a touch early to beat the massive crowds
all exiting at the same time that we knew that
Noah couldn't handle. We're hoping perhaps we'll be able to make it
to a movie premiere (as Noah has never yet been to the movies yet
either), or even a Rockies game as Luke is itching to see a baseball
game, if we can find something that is not in the heat
of the day or in direct sun. It's always exciting to receive a
HopeKids email in my inbox, it's like opening up a good surprise. And
the executive director and program director are so genuine and warm,
their love and kindness makes you feel as if they have
been in your life since the beginning of your journey. They are
authentic in their mission, and are bringing hope, love and faith into
the lives of so many families with their efforts.
You can find out more about HopeKids
here
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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