Saturday, August 6, 2016

HopeKids: First Event of Blessings & Faith

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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 favorHis 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


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