Sunday, August 21, 2016

Racing Dreams

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The moment that those doctors sat Chris and I down in a room with a couch and two chairs, I knew before they even said it.  I could tell just by the look in Noah's nurse's eyes and their intentional avoidance of me, that the news about Noah's diagnosis wasn't going to be good.  But even when you think you've prepared yourself for the worst news possible, you haven't.  You can't.  It's impossible to do. 

It's as if a giant tsunami hits you without warning from behind, and you are literally drowning, you can feel yourself choking, struggling to breathe, inhaling water and at times just wishing you could succumb to the pain.  Then you realize that all the hopes and dreams that you ever had for your life and your child's life are drifting back out to sea, forever lost.  Gone. 

With each passing year I've felt like I'm walking the shoreline trying to find where all of it went.  Did it all sink?  Is it all just rusting away at the bottom of that endless ocean? Occasionally, I'll find a piece of a shell on the shoreline - a piece of our dreams floated back waiting for me to find it, just hiding beneath the sand's surface. 

This summer I found two broken shells; we won tickets to Thunder Mountain Races from The Chelsea Hutchinson Foundation's fundraising benefit and we were able to take Luke to the race track for the first time.   And then we found our second broken shell when Luke and Noah's grandfather donated his Mile High National Tickets to us so we could take Luke again.  But the shell wasn't whole.  Noah was still missing from the races.  At home with his respite care provider he couldn't join us.  The hot temperatures, lack of shade, only porta potties and no real space to handle his incontinence care, and his ability to handle direct sunlight and regulate body temperature, sprinkled with Noah's sensory challenges,  we simply had no idea how to make that work.
Our love story before we ever had children started over the race track and racing cars.  We always thought we'd share that passion with our children and that they too would enjoy the sport just as much as we do.  But when your dreams are washed out to sea it all changes.  Everything just changes.  Neither of us have raced in a decade, and it's been 9 years since I even last stepped foot at the track even as a spectator.   But I finally found a complete sea shell on the shoreline, that dream we've been looking and hoping we would find for a very long time.  It meant our entire family unit could be together and experience that dream. 

On a whim I reached out to Bandimere Speedway to explain our difficulties with Noah to see if there was anything at all we could do to make it work to take Noah to the track with us so he could watch the races.  I honestly expected that they'd say while sympathetic towards our situation that they simply could not make accommodations for Noah's unique needs. But they found the perfect situation for Noah and extended us an invite to come up to the track.  We went up for the Chevy Show, which couldn't have been any better.  Chris used to race a Chevelle so his passion has always been rooted in Chevy cars. It was also a moderately low-key event with less traffic and people, a great combination for Noah.  We used Suite 203, which was so nice because we only had to lift Noah's wheelchair up just a handful of stairs.  And Bandimere staff was so kind to allow us to park next to the tower so Noah would not have be exposed to the heat of the day for any extended period of time.  Noah had access to air conditioning and a fantastic view from his wheelchair on the top deck of the Suite.  We arrived around 11am in the morning and weren't sure if Noah would like it or hate it.  We anticipated we'd be lucky to stay maybe a couple hours with him, but we didn't leave until after 7pm and were the last to leave the track.
We bought concession stand food and brought it back to the suite, Noah comfortably ate food pureed pouches we brought while watching cars go down the track.  It was simply amazing.  The Jet Cars were also at the Chevy Show - and they are loud and they are fast, but Noah loved feeling the light rattle in the Suite and thought it was exciting.  We all did.  It's a really rare view of watching Jet cars from behind when they literally launch and take off down the track.  You see this giant smoke cloud coming towards you engulfing the tower, and then they're just gone, like a flash of lightening.  For me it's a really close tie between Nitro and Jet Cars for a thrill.

We had the most amazing hosts, that checked in with us through the day.  John and Christy, the ticket managers, were so sweet.  I really enjoyed seeing them throughout the day.  They felt like long lost friends that you finally were reunited with, they were so attentive and loving.
John (Ticket Manager)
And we received the ultimate visit from John Bandimere and his wife.  It's been years since I had the pleasure of speaking with Mr. Bandimere.  To us he's the equivalent of a celebrity.  We were in awe, and so honored that he took the time out of his day to visit Noah and our family while we were there.  He embraced Noah in a loving kiss on his forehead, and looked at him as if he were the biggest blessing of his day.  Mr. Bandimere shared how his best friend was currently in the hospital and struggling to get well. He went in for a heart procedure months earlier that led to complications like pneumonia and now a tracheotomy.  I could feel his pain and worry for his dear friend in his voice.  Mentioning that he had gone and prayed for him and that he had a report he was having a better day.  We know the power of prayer because a gentleman by the name of Bill, came and prayed for Noah when we took him off life support.  It was the turning point for Noah and he never looked back.
John Bandimere, Jr.
I'd ask that all of you send your well wishes for Mr. Bandimere's closest friend and offer him prayers and support during this difficult time.  There is nothing worse than watching someone you care so deeply about not doing well.  My hope is by this time next year, Mr. Bandimere will be able to tell us that his friend fully recovered and that they are planning new adventures together.

After the races were over we all played on the tracks and showed the boys how sticky the tracks can be at some races.  It's a substance that kind of makes your shoes feel like human fly paper, you just really stick to it and can even walk right out of your shoes.  The van parked just past the tower close to the tracks.  It was a surreal moment.

Certainly spending the entire day at the race track made us feel like us again.  A huge part of what we loved was restored.  I know that Chris is still itching to one day race again.  Yet, when I told him we could race Noah's van he laughed and thought I must have been serious and exclaimed "No, we can't.  What if we blow the engine?  It's all we have for Noah."  There used to be a day we'd race anything we were offered, but now we're very protective of Noah's ride.  I do hope that one day the boys will get to see their daddy race again. One never knows if I found this sea shell on the shoreline nearly eight years later, then one never knows what all other dreams we might recover someday.
I hope we can make it out to the track again with Noah.  He enjoyed it - really how could he not?   It's in his DNA.  It was such an incredible event in our lives and something we'll treasure always.  A big thank you to Bandimere Speedway and everyone who helped coordinate this special day for us.


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

Monday, August 8, 2016

Once Upon a Time

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Once Upon a Time... there existed an incredibly supportive adaptive chair called the Comfee Seat that existed in the USA for sale.  It had a big price tag;  For a size 1, the retail was set at approximately $10,800, size 2 at $11,900 and size 3 at $12,600, with a shipping cost of $650.  A price tag that left Noah's parents super sad because they knew they could never fund it out of pocket.  One amazing and lucky day, Noah and his parents had a chance to see the Comfee Seat in person - and even the factory it was made in.  His parents dreamed of the day that steadfast and caring builders would someday be making Noah his very own Comfee Seat.  However, Noah's parents had only one chance - which was to get his Medicaid insurance to recognize that this chair was a medical necessity for Noah and agree to fund it on his behalf for his daily living needs. 

His parents asked his local durable medical equipment provider, NuMotion, if they would put in a request to Noah's Medicaid for funding for the Comfee Seat but assumed the company had failed to do so.  A while later Noah's personal customer service representative at NuMotion replied that Ottobock, the USA distributor for the Comfee Seat, was no longer distributing that piece of equipment for Leckey.  Noah's parent's were extremely disappointed and sad as they could not find a comparable product.   Noah's parents were led to believe that since the chair was no longer being distributed for sale in the USA, that NuMotion never had pursued the insurance request as they were asked. But little did they know...

Eighteen months later, Noah's parents needed to ask Medicaid for a whole bunch of equipment to replace the equipment he had outgrown in his toddler years.  One of those pieces of equipment was a special tomato floor sitter with rolling base and table.  Something that years ago his parents were forced to pay out of pocket for because at that time there was not an insurance code for the special tomato products.  Medicaid raised a red flag with several pending requests and kicked-back the orders before them demanding additional information as to why the adaptive equipment before them was being requested. 

During that time, Noah's customer service representative with NuMotion informed his parents that there was an approval for the Comfee Seat (or what is referred to as a PAR) in the Medicaid system just "sitting there" unfulfilled.  All this time that his insurance had approved funding for the Comfee seat worth thousands of dollars.  A seat that would have been a dream come true for Noah.  Something that would allow him to participate in family life, something that he could use for homeschooling, something he could recline in when he was sick and needed to be upright, something he could eat in, have access to his AAC device in and most importantly that would offer him the postural support that he needs due to his unpredictable tone and lack of trunk and head support, while protecting his hips from further dislocation and above all else making him comfortable. 

NuMotion proposed using the Comfee Seat PAR that his family never knew had been approved all this time, for a Special Tomato floor sitter with rolling base and table worth approximately $1,500 as it shares the same category of insurance funding and coding.  Nearly a $10,000 difference from what was approved.  Noah's family has been sick to their stomach since learning this news.  They know if they consent to allowing the Special Tomato floor sitter to be ordered under the current approved PAR for the Comfee Seat that it blocks Noah from another adapted seating device for about 3-5 years.  And the Special Tomato floor sitter pales in comparison to the level of postural support and comfort that the Comfee Seat would have provided Noah.

Noah's family still saddened and heavy, reached out to Leckey, the manufacturer of the Comfee Seat, with the hopes that perhaps they had changed their minds and would redistribute the Comfee Seat in the USA for purchase.  But the reply came back with the news that they had no plans of ever doing so.

Now Noah's parents are faced with a really difficult decision.  They wonder if they should try to fundraise for the special tomato floor sitter and table so that it doesn't block them from a more supportive adapted seating down the line that Noah really needs way more than the special tomato seat long-term.  Or if they should say yes use that PAR, and then know that if the Comfee Seat or another comparable seating device is found he won't be entitled to an approval for many more years down the line.

It's unfair that Noah's parents were never told they had an approval for the Comfee Seat when it was still being distributed by the manufacturer for USA sale. If only they had known, all this time Noah wouldn't have had to lay on the floor for additional hours because he doesn't have the seating he needs, deserves, and that offers him the postural support he needs, even more unfair that they feel their only option because of financial circumstances it to consent to the Special Tomato in lieu of of the Comfee Seat.

His mom is really heartbroken and it hasn't left her mind for five days since she learned of this news.  She keeps trying to decide on what to do.  She feels boxed in by a system designed for failure, for support that isn't there, endless poor customer service,  and products she needs for her son but can't get, and when she gets close, the rug is always yanked out from under her.  She has less than twenty-four hours to make a decision before Medicaid reconsiders the PAR trade and Noah's customer service representative gets back from vacation and requests a decision.

This won't be the happily ever after ending Noah's family wished for.


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

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.