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.

Tuesday, July 19, 2016

Telling My Heart To Keep Beating

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It's a strange thing how life can leave you feeling like you're been shattered in a million different pieces. And just when I glue myself back together, put imaginary band-aids on all the open wounds, something comes along again and just leaves me broken all over again.  Part of me so incredibly frustrated that I even allow others to impact and influence the direction of my days in such a powerful way.  I crave days without problems when nothing goes wrong, nothing for me to fix, nothing for me to fight for, a simpler existence. 

I have found myself in a purge mode, where I'm trying to cleanse my life from things I don't need, possessions that aren't essential that I can part with to create more room for Noah's needs.  In some ways it's a feeling of relief - like this giant epiphany that I've been searching for.  Perhaps it gives me a sense of influence over things that are often beyond my control. I sat down one afternoon and evaluated the roots of my frustration.  Certainly a large part lies in the daily fights for finding help for Noah and failing.  Empty promises a strong column on the chart - people reassuring me they'd help fundraise, or fund an item for Noah, but none ever had true intentions of following through.  Those who sent me words that they'd "pray" for us, when in reality that simply is a phrase people casually use to absolve themselves from any real involvement in your life.  If they pray then they don't need to physically be present, or send you a card, or call you, or bring you a gift certificate to the grocery store, to ask you to lunch, or to event think about you beyond the mere two minutes it takes them to type out an email message or social media comment that says "I'll pray for you."  And while I believe in the power of prayer people toss it around so casually now that it's become just words and not a real action.  I crave honesty; those who deliver in promises and are true to their word, those who don't leave me feeling stranded all the time.  And I've come to accept the only real person I can ever count on is myself.   Which means if Noah needs something, I'm going to have to find a way all on my own. 

Fighting and advocating can bring you to your knees if you aren't careful.  You can suffer significant burn-out from trying to be the world's hero.  You realize everyone has put you on the front lines, but they expect you to fight the battle all alone.  It's all I can do to fight just for Noah and even then I often lose more than I win.  I hate this perpetual feeling of a me versus you theme to my day.  I wake up prepared to fight with SSI, Medicaid, Medicaid Waivers, caseworkers, supervisors, managers, attend court appeals hearings in an attempt to reverse denial benefits for Noah. And outside problems are intensified when you are a parent with special needs - trying to find creative ways of apologizing to my neighbors who's yard was inadvertently sprayed with an organic weed killer from our yard service company that totaled their decorative plants growing in between their flag stone pathway that separates our property, dealing with contractors that lie to get a sale simply because they see you as an easy mark and they know you're desperate to replace a molded pained window that exists in your medically fragile child's bedroom, a security company who then wants to further take advantage of the situation and tells your contractor to permanently disable the window security so they can sell you on a digital more expensive system that is triple the cost, having a mortgage company conveniently losing your check in the mail and to avoid a late fee you hand out the details of your bank account over the phone and are forced to place a stop payment on a check that costs $45, only to have that company attempt to cash that cancelled check two days later. It's like a cluster of daily complicated problems I'll never escape from.   I have to keep telling my heart to keep beating - to keep going, to breathe.  Just breathe.  Just try to breathe.   It's easy for life to feel like it's suffocating you when you're dedicating all your positive energy and every ounce of yourself you pour into your child with special needs and everything that accompanies that.

Although I've really lost count I think it was Noah's fifth or sixth appeal hearing on May 20th of this year.  I was battling the denial of PPod Accessories for Noah's existing PPod that we paid out of pocket for, and an in-home personal chef to assist with the preparation and dietary needs of Noah's pureed foods.  Of course these denials I believe were very much retribution and retaliation for speaking to the news media and press about the financial circumstances surrounding Noah's denials and supporting transparency among all of Colorado's Community Centered Boards or also commonly referred to as CCB's.  I never even had the chance to formally request these benefits - the State simply anticipated I "might" ask for them based on some very lose conversations prompted by Noah's caseworker at the time.  The State certainly didn't deny that retaliation was the reason why Noah received these denials via a telephone message within a half an hour of being called for a public comment to accompany a broadcasted media story of CCB's getting their hands caught in the cookie jar stealing funds designated to go to children like Noah and being used for things like Costco memberships and private telephone bills.  CCB's fighting hard against transparency hiring lobbyists and spending hundreds of thousands of dollars to avoid having to be transparent.  But those who have nothing to hide - hide nothing at all.  While SB-38 passed, it didn't encompass everything that I wish it had - in a way it was a stripped down version.  And while it's a good start perhaps, we still need and deserve so much more.

The State was citing Social Security Act Section 6505 for the reason why they decided to suddenly deny Noah PPod accessories.  SSA Section 6505 was signed as Federal Law in 2011.  Five years later, they decide to use it against Noah.  Section 6505 prohibits the exchange of money to any out of country vendor for any Medicaid Waiver benefit.  This means that equipment that exists in places like Canada, the UK, and Northern Ireland can't be paid for with Medicaid or Waiver funding.  Leaving everything once again a completely out of pocket unassisted cost for already financially struggling families.  I think the original intent and my interpretation of SSA 6505 was to prevent Medicaid fraud; for instance someone on Medicaid traveling to Mexico for pharmaceuticals or treatment, and not necessarily to block a small child from life changing adaptive equipment that they need for their daily living needs and quality of life.  An Administrative Law Judge however found that his hands were tied as it is Federal Law, and all States are bound by it.  The Executive Team for Colorado Medicaid assures me in telephone conference calls that they will continue to explore the application of SSA 6505 but I suspect if they do it will be years from now and that there is no real hurry as SSA 6505 is beneficial for them - it allows them an outlet to prevent even more children from accessing paid category benefits, and in turn they will pocket even more.   The Administrative Law Judge felt that an in-home chef or person to assist with the preparation of Noah's meals was a covered benefit under EPSDT which isn't the case.  I likely didn't fully explain my intent of that request, because in all honesty I didn't even know the State was going to issue me a denial for a service that I was just tossing around in my mind.  EPSDT Medicaid only covers certain supplements and calorie drinks, it does not provide for a personal cook/chef, in-home dietician of sorts.  I might explore that at another time, I'm not really all that sure - it never was a front runner of things I was considering pursuing for Noah.  The State's only intent with that denial was just to provoke an angered response.

A few weeks later the State decided to decrease Noah's respite and sent me an 803 notice.  Because I am Noah's legal CNA, there is a provision that says because I am Noah's CNA that I need less respite hours than a mom that has paid private duty nursing and goes off to work each day or can come and go as she pleases because she has hired care for her child.  Backwards I know but I don't make this stuff up.  If anything the parent who dedicates their entire day to their child's 24/7 care needs more relief than the parent who has help.  In any case this means that Noah cannot exceed his category funding.  Other families can, but I'm penalized because I'm Noah's CNA. There isn't anything I can do about that regulation either.  I'd lose if I tried to appeal it - as a Judge would be bound to follow that rule. The only thing that I could dispute would be that his county takes a 3.5 percent fee out of Noah's yearly funding and pockets it on any category or benefit they approve which leaves Noah with even less than he would be afforded otherwise because these agencies are just making money off of an already bad situation. Here's all the help we'll dangle it like a carrot you'll never reach, and if you do reach it, they're going to snap 1/4 of that carrot and eat it themselves.

After a long battle that reached more than eighteen months from start to finish came to a final conclusion.  The fight for adaptive sensory clothing for Noah was finally fully won even after the State filing an Exception to Initial Decision and then taking nearly another five months for a determination.  No parental portion of responsibility which I knew was the case all along.  The State did require I obtain another PAR, which had already been done having Noah's treating physician sign off on how many articles of clothing he'd need seasonally.  While it felt redundant I jumped through the required hoops and I coordinated and picked out some clothing to get Noah into the upcoming fall season.  I wish the victory had been easier, I wish that no parent had to fight as hard as I have fought.  It feels so cruel and unnecessary in all that we experience in a day that someone would intentionally add to our stress and heavy heart.  It feels so bittersweet - a strong fight won, but I know so much more still lays ahead of me.  But as a portion of Noah's allotted clothing lays before me ready for me to hang up a feel a huge sense of relief and as a look at this small pile of clothing as if its a symbol of my unwavering efforts and promise to Noah that I will never ever give up.

Even without a heavy dose of evening caffeine to keep me alert for Noah's needs in the night, my thoughts keep me up at night trying to out-think the situation.  Where the money will come from? How to fund a wheelchair, an activity sitter, a floor sitter, a Mygo Leckey Tour Base, a seating system for Noah's Zippie chair, what to do with Noah's Convaid models that I love but that are giving him pressure sores.  Medicaid of course "kicked back" three of Noah's requests.  A "kick-back" is one step away from a denial.  They do a "kick back" to gain additional information to determine if they should approve it or deny it - you have to answer additional questions and justify the need.  Sometimes they'll approve it, sometimes after the "kick-back" they'll deny it.  I'm always so prepared for a denial that since the "kick-back," my mind has been racing to how fast could I fundraise for these things, what could I sell in my house to make sure Noah gets them, appealing feels endless and drags out things Noah needs sometimes longer than a year when he needs something now, not a year from now, knowing that some things his waiver might fund, knowing that since that too is a Medicaid program I'd likely face a denial there too.   Noah has outgrown all equipment he currently has from his toddler years.  He is seven years old - quickly headed for eight and I worked so hard to acquire him all that he needed, and I can't just start over.  I can't just find another foundation to buy him a bigger floor sitter, or a new wheelchair seat, or a mobile base for an already existing device - I can't just find these avenues of support anymore.  The resources have dwindled.   Many of the pieces of equipment Noah currently has didn't even have a Medicaid code for funding when he was little and I was forced to put so much of it on credit cards to obtain it.  Years later there is no safety net, and nothing to fall back on.

The really tragic aspect about being so dependent on a broken government system for children with disabilities is that I'm doing my job.  I'm being this incredible parent to Noah.  I search the ends of the earth to make his quality of life and happiness the best that if can be, I am devoted and offer him every part of my being and spiritual self, I love him beyond all measure and have had to even alter my personality over the years to do combat and battle on his behalf when that's not at all who I was before he was born.  And I can't just absolve those standing in the way of the benefits that Noah is entitled to.  And when I say entitled I mean benefits that are regulated under rules, regulations and laws that are being withheld from him.  And it's not just Noah - it's all children like him, it's happening to so many of them - especially if their parents step outside of the compliant box to appeal a denial or challenge an injustice or promote change through legislative efforts.  Doing the right thing by your child and the special needs community doesn't at all make you very popular with certain agencies. 

- Investing in a child with special needs in no way a luxury, but should be considered a national necessity. - A variation of thoughts by Marian Wright Edelman


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

Wednesday, July 6, 2016

4th of July: Smile Gratefully

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Blazing summer heat intensified the smell looming from neighborhood bar-b-ques and July wild raspberries ready for picking.  Classic signs of impending Independence Day celebrations to come.  I never fully know how far to plan our Fourth of July activities since Noah's sensory challenges vary and can be unpredictable.  Yet, with summer in full swing, I can't help but want to absorb that feeling of bar-b-ques, picnics and evening fireworks.  I decorated the kitchen table with a disposable stars and stripes tablecloth and adorned with a handful of red, white and blue napkins and paper plates.  Luke and Noah in matching flag shirts, ready to celebrate the day.
Ironically Noah lost his fourth tooth the evening of July 2nd, just in time for the 4th of July.  He went to reach for a toy and his strong athetoid movements caused his arm to jerk back and he hit himself in the face knocking it out.  It had been very lose but not lose enough for us to pull.  We both were relieved that Noah didn't swallow this tooth.  The search for his 3rd and swallowed tooth was called off after seven whole days of searching.  I never imagined that I'd be mashing feces in an attempt to locate it, yet the mother in me really wanted a full collection of my child's baby teeth.  I suppose I would have made a terrible gold miner as I failed to locate that teeny speck of white.
Given the track record of special need children who frequently swallow their teeth, I have to accept that three out of four isn't bad considering the challenge of a child who cannot put their hands in their mouth to wiggle out their own teeth.  Noah left a tooth fairy note to explain the loss of his third tooth and the tooth fairy still left him money.  She must have been feeling particularly bad for him as she increased the amount for his 4th tooth to two dollars.  Noah beamed with delight over the financial increase.  Let's hope this is motivation to prevent him from swallowing any more.

It certainly is different looking at Noah with a new smile.  His smile always particularly precious, now has a new character about it.  And it feels like a piece of his childhood is fleeing and I miss the days of yesterday.  Common feelings of motherhood for all mothers.   Yet, we can't remain frozen in time and while Noah doesn't blossom in milestones, he certainly grows and thrives in a variety of other ways that tells my heart he's growing up.

Noah's grandparents smoked brisket and ribs, and I attempted my own smoking of salmon for the first time.  I'm trying to branch out and try new things.  I often get so comfortable in this comfort zone I create for myself that I never leave the boundaries of what I've familiarized myself with.  The salmon was a good first effort, but perhaps I added too much salt for the brine and I certainly will consider that more brown sugar the next go round is essential.  Noah found his blend of smoked bar-b-que and potato salad delicious and was only moderately found of his pureed fruit salad.  Of course he loved his cheesecake finale.  The child with a perpetual sweet tooth. 

Noah doesn't do well in regulating body temperature.  Extreme heat and cold is problematic and always has been.  Upon the recommendation of other special needs parents we purchased Noah a Water Mat from Walmart for $19.  Was probably the best $19 I've spent all summer.  It's like having an 8x5 play waterbed type area for Noah to roll around in and offers the a cool soothing comfort from the cold hose water.  And the really great part is both children like being together which gives them an opportunity and way to play together.  It's really a super cool product that I wish I would have found years ago for Noah.  Now I have to hope it doesn't spring a leak as he's grown quite attached to it.
Noah also geared up in the Upsee to help his daddy water the flowers that were destined to suffer a demise due to heat stroke without a much needed drink.  I had hoped to walk Noah in the Upsee, however once we were suited up together it was apparent that Noah has simply grown too tall in comparison to my short height.  I think we will have to pass the Upsee activity on to him and his daddy.  I wish there was another product similar to the Upsee for older, growing children.  The entire family will be sad when we have to retire the Upsee due to growth.
We walked to the city's Fourth of July celebration which they hold in front of our house at the park each year.  We always walk down and then walk back.  They have small activities like inflatable bounce houses, live music, and free cupcakes.  We never really participate in anything, our family dynamic is so different that even in a crowd we still stand out.  It's really a quick walk there and a quick walk back - really simply to say we checked it out.  We didn't realize when we moved into this house that the city's fireworks were nearly overhead our house.   Not the best for a child with a severe sensory processing disorder.  Noah is always a gamble on how he'll react.

Surprisingly, there was no big meltdown or hysterical crying this year.  He was very jumpy with each pounding loud boom, and I am not sure he loved that feeling.  He did however tolerate the situation to get through it, and seemed to use his grandmother and her assistance with an umbrella to prevent any rain sprinkles from touching his legs a security blanket, but I assume he was likely very relieved when the firework show had concluded.  Despite neighborhood lingering fireworks he fell asleep relatively quickly. 

"When all your attention is focused on fireworks you forget there is an empty sky in which the fireworks appear." Michael Jeffreys


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

Tuesday, June 21, 2016

Say a Prayer, Send a Smile, Make a Difference

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The C.O.L.E.'S Foundation has been an important part of our journey with Noah for many years.  I'd tell you that finding C.O.L.E.'s all those years ago was just chance, but nothing is just chance.  It was as if something much bigger led me to find them.  Through the years, C.O.L.E's Foundation has been faithful in posting encouraging and loving words on Caringbridge blog posts (Noah's companion blog that I maintain for his original followers), and has never ever abandoned us when we needed prayers or a virtual hug.  Many foundations have come and gone in Noah's life, very few wanting to be involved continuously.
There have been days when I've felt so down and out, flat on my back with the weight of the world on my shoulders and I sure enough someone from C.O.L.E.'s faithfully leaving me a loving message of hope, faith and courage to lift me up in some of my saddest hours.  It's rare when people don't move on and onto other things in their lives, leaving you behind when you have a child with special needs.  My trust in strangers and people who care have diminished to almost nothing now, I question everyone's intentions who walk into my life knowing it won't be long until I never hear from them again.   I've grown into a pattern of someone introducing themselves by name, and me not making an effort to even retain the name in my memory because I know that the likelihood of me seeing them again is slim to none. 

C.O.L.E's has been the exception to this and for countless years they've never gone away, they have always been there, waiting for me to speak up about a hard day, quick to catch me with kind and loving words to support me in my time of need.  Very few people in this world will do that.  I have very little supports in my life that care enough to even give consideration to how I'm doing or how we're all doing as a family or more importantly how Noah is doing. People check in time from time almost as if they are outsiders casually taking a certain pleasure in the the train wreck called your life, few genuinely have an interest in helping you put the pieces of the wreckage into perspective and reminding you that although you are bruised and hurt and mangled often beyond recognition that you're still living, and how important that fact is.  Because tomorrow holds the hope of a new and better day.

If Noah isn't doing well, C.O.L.E.'s is one of the first places I go to ask for prayers.  They are so responsive when I just need someone to hear me, pray for Noah and send him well wishes.

This month C.O.L.E.'s Foundation featured Noah and our family as their family for the month.  For the entire month C.O.L.E's supporters from around the world send Noah cards with notes about themselves, prayers, wishes, love and tenderness.  These cards have been particularly special to me this month, as I've had weeks recently where I just feel like the world has turned its back on us.  I've been hurt by treating providers that haven't been truthful with me, repair contractors that disappear and never show up again once they lay eyes on the little boy on the floor, emails that are curt and less than caring when it comes to services your child needs, inquiries about even taking Noah to Bandimere to be in the tower so he could watch races with his dad and being told unless an organization requests it on his behalf it's a no..., I have been distressed to say the least about so many things that I have no control over.  That's the hardest thing - to feel helpless over situations that I wish I could change and I can't.  And those helpless feelings of feeling like I'm falling short for Noah sting like the longest sword is being driven through my heart.  And in my spare time I convince myself that I don't want anyone else's heart to bleed like mine does so I attempt heroic efforts to help other special needs families navigate various problems in their own lives.
Inevitably this all takes it toll on my energy, my hope, my faith, and trust in my fellow man.  Each letter, which have come daily from the C.O.L.E's foundation has felt like a reminder at the end of the day that while things seem hard (and they are), that at the end of the day - somewhere out there - (just like the theme song from the movie An American Tale with little Fievel the Mouse.... someone is thinking of you.  And some days before you go to bed you really just need to know that. 

Thank you C.O.L.E's foundation for sending us a team of prayer warriors, people dedicating precious time from their busy day to stop and hand write a note, put it an envelope and mail it to us with such love and kindness.  Faith and prayers unwavering.  Hope being sent like beams of sunshine.  I have felt every powerful written word this month, and I hope to bottle up this feeling of being loved so that it carries me through all the days ahead.
For those of you wishing to make a meaningful difference in the life of a special needs family like ours, you can always sign up to support their Say a Prayer, Send a Smile, Make a Difference Program.  I can tell you from personal experience that it's such an important program to remind a family that they aren't in this alone and that they are cared about.


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

Monday, June 20, 2016

Feel the Burn: The Cheyenne Zoo

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We woke up geared for our last moments at our Broadmoor Cottage, we ordered conservatively - a tiny room service breakfast to save on our funds... although I wanted that fancy french toast, I used my will power to order a small peach yogurt his grandmother a strawberry, I splurged for Luke who insisted on an omelette and his daddy had cereal.  A small but still lovely breakfast before we headed out to the Cheyenne Zoo and then making the drive home.

Luke I think detected that we were leaving.   Not tickled he was a bit of a handful to convince putting his luggage into the car.  I can't blame him, I'm fully grown and I wasn't really loving the idea of packing up and leaving this wonderful weekend behind either.  But as they say, all good things must come to an end.  Lots of guests were checking out the same time we were, many having personal driver's and their names labeled on vehicles who were patiently waiting on them curbside.  The hotel allowed us to keep our vehicle with us on property with remote entry, which was so nice especially given never knowing when we would need to come and go quickly with Noah.  I was so appreciative of their thoughtfulness to what would make us comfortable.

Once we had packed up and loaded the vehicle we sad our goodbyes to the staff who had coordinated such a peaceful and lovely time for us.   Feeling as if I've known them years and not just a few days.  People that I hope that I'll be able to remain in touch with throughout our journey as a special needs family.  Their care and tenderness certainly extended beyond just doing their jobs.  And I appreciated their genuine love and sincerity.
The drive to Cheyenne Mountain Zoo was short.  It's very close to the Broadmoor.  I had been once before in my life as a child, but it either wasn't that impressive to me at the time, or I was too young to remember it.  Perhaps a combination of the two.  Noah adores the zoo, so I fully expected him to love the Cheyenne Zoo, but upon arrival he started to pout and cry growing more agitated with a zoo gift shop worker who wouldn't stop talking to him and delaying him from seeing animals.  His crying grew louder until his daddy had to carry him around the zoo for a while, hard to do in hot temperatures with such high elevations on the mountainside.  Noah finally calmed down enough for us to put him back in his wheelchair but not before realizing he needed to be changed.  Personal details I know, but it continues to frustrate me that there are no good spaces to change children like Noah in any bathrooms.  We have to either lay him on the floor, try to hold him while one person changes him upright or slouch him down in his wheelchair and pray he doesn't fall out of it while we try to maneuver changing him.  I'd like to believe that someday the law will require changing tables big enough for all disabled adults that must rely on caregiver assistance for incontinence care.
Noah never really fully regained his happiness.  He tolerated the giraffes who were overly curious about him.  He seemed to find their tongue exploration obnoxious.  The smells from the zoo were overwhelming, which was hard on Noah's sensory gag reflex.  And everything is uphill, and uphill and uphill.  In fact just when you think you're done... yep you guessed it, another hill.  When pushing a wheelchair you can certainly feel the burn in your legs.  Who needs to go the gym when you can find a really elevated zoo and push a wheelchair?  Nope not us.
Luke was rather board, it's hard to see many of the animals without stairs or an elevator.  It wasn't the most accessible friendly zoo, certainly it felt more crowded than our local zoo, it was smaller.  It does have incredible views on a walkway that makes it feel like you are floating on top of the entire city below you.  People whipping out those selfie-sticks to make it look like they are sitting on a cliff with the foothills and houses in the distance.
We decided there wasn't a real good option to eat at the zoo and made the decision to stop off and eat somewhere on the way home instead.  I don't think Noah was overly impressed with the Cheyenne Zoo.  Perhaps he was sad we left the Broadmoor (and let's be honest who wouldn't be?) and I know he probably was let down that it wasn't Santa's Workshop again... because well, Christmas rules.
We had a quick bite to eat, where Noah also had a meltdown because I couldn't order him a Frosty fast enough from Wendy's... and we headed home carrying with us sweet memories of our time together.


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