Saturday, August 5, 2017

They Don't Make a Pill For This

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Empathy is a dying emotion that we all should possess.  Society is developing into a don't bother me realm, and one in which isn't going to be very sympathetic or share a listening ear when you try to be expressive of the challenges that come along with special needs parenting.   There is a pill for that they say.  Go see a doctor - they can fix anxiety and depression and all sorts of things...

I assure you there isn't a pill that can fix the roller coaster of emotions that come along with special needs parenting.  The assumption is that naturally if you have a child with special needs then perhaps you too either have mental illness or will develop mental health illness as a result.  You'll be plastered with self-care articles, friends who'd rather tell you find a pill for it than embrace you in a hug, sit with you and coffee while you cry, a stranger who sees your distress and offers to help you pick up the pieces and become your hero.  We're in a very distant type of age.  One where social media has over taken any real sense of simple face to face interactions and relationships.  Yet countless special needs parent sit in this empty zone.  One where they are criticized at the very slightest inclination that they aren't bearing all the hardships and challenges with anything but a smile on their face and a skip in their step.
What people fail to realize is that our children aren't the problem.  In fact, that is really where our greatest joy grows from.  We pour ourselves into our children, their happiness, and the love that they bring into our lives.  It's all the outside chaos that could be changed - that needs to be fixed, that could be so different that is the root cause of our special needs distress.  It is all the complicated emails, it is the system and all the government agencies we have to deal with, bad news that comes daily in the mail, insurance denials, forms to fill out, endless appointments coming our way, trying to digest and get our head around yet another diagnosis to add to the growing list that defines our child on paper, financial hurdles, and the out of pocket expenses without the means to pay for them.  The constant feeling that well you're continually losing on all fronts of your life because you're giving every ounce of yourself to fight for the needs of your child.

There isn't a pill you can swallow that will justify the the fact that Medicaid has overturned another Administrative Law Judge who ruled that a request was a medical necessity and Medicaid laughs in the face of any Court decision... there is no pill you can take to deal with having to report wages to SSI monthly, or fight overpayment demands, there is no pill you can take that will help you figure out where to pull money out of thin air for uninsured medical costs, or a pill that can make you forget about how full your calendar is with appointments, no pill you can swallow that will lessen the pain or stress of any of it.  

The cure lies in help that isn't there.  Legislative changes that make it easier for families like mine to actually go before a Judge and force Medicaid to comply with a favorable ruling; better employees that sit behind the Social Security desks that both speak fluent English and know how to do basic math and not be four months behind on calculating your household income; caseworkers that don't sit on your applications and requests for weeks or months before making a determination, durable medical equipment providers that care about your child's well being far beyond being a financial figure to them and their company; State governments that don't do everything in their power to try to block you from you child's medically necessary needs for a quality of life; friends and family who want to be there with you in the trenches - and I do mean the trenches.   In the thick of the bad and the good, who will cradle you in the hard times and who will want to help restore your faith that things will be brighter and better tomorrow.  The cure really lies in that we need more help that we aren't getting.  The system is failing us, society is failing us, and our friends and families are failing us... there simply isn't a pill for that. 

Love,



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

Monday, July 24, 2017

Dare to Dream Bigger

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A dreamer is an ordinary person.  What turns a dreamer into something extraordinary is their unwillingness to let go of the thought of "what could be." It's built into the human spirit.  An undeniable fire in your soul that says you can make something possible mixed with the sprinkle of the power of intention.   I had a taste of the impossible last year with taking Noah to Bandimere Speedway to watch the Chevy Show last year.  It left both Chris and I thirsty for more.  A dream fulfilled, but how much bigger could we dream? Chris and I never verbally said it out loud.  We never expressed our biggest wish.  God knew, but he's always known.  Experiencing the NHRA Mile High Nationals with Noah -  the ultimate dream.  I never thought we'd get close.  The logistics of an event that large - and finding another suite opportunity - well let's just say I thought I'd have a better chance of being struck down my lightening. 

I was hoping to at least in some way maybe get Noah back to the track one more time, for any race.  It didn't much matter the event.  Just to touch our feet again at the track was an itch we just couldn't stop scratching.  We tried, oh how we tried.  But we'd keep coming back to "I wish."  Bandimere put us in touch with a handful of suite owners to inquire with.  I hesitated for weeks reaching out to any of them. It isn't as easy as might think to try to open a conversation with... "Hi, I have a severely disabled son, can you help me?"  You have to prepare yourself to lock your pride behind a heavy door, squeeze all your emotions inside, and just try...

I tried to draft this simple email.  But it's never really simple or easy when you're trying to explain our challenges or our special needs family dynamic to strangers.    It isn't so much a fear or rejection as it is a worry on how you'll be received or perceived.  Can someone possibly understand through a few sentences that my fingers can write?  Can they feel my words?  Can they know what my heart aches for?  Can they sense my pain and will that scare them away?

I hit the send button and had that feeling like you wanted to bury your head under a pillow and just peak out occasionally to see if there was a response waiting in your inbox.  I prepared myself for the crush of zero responses from anyone.  When you are a special need parent you tend to always prepare yourself in some way for the bad news in some way, it really becomes a self-preservation tactic.  A gentleman by the name of Mike responded quickly.  But he wanted me to call him.   In my mind I weighed that out thinking he didn't have the heart to let me down gently in an email, and preferred to tell me he sympathized with our unique circumstances but had no season availability to assist gently over the phone.  You can be okay with that I coached myself and dialed his number. 

Mike answered with the warmest and friendliest voice.  A voice that offered comfort and kindness from the moment he picked up the phone.  We had a lovely chat about Noah, he shared with me his own life's storm with his dear wife Amy fighting a battle with cancer and invited us to the Jet Car Nationals and wanted to warn me that she'd be wearing a mask not because she was ill but because she was medically fragile herself right now with chemo treatments.  He shared with me a bible verse, words I needed to hear.  He reminded me that God collected my tears and for the first time in months I didn't feel so alone.  I was so excited.  I happen to like jet cars just as much as I do nitro fueled.  And I was thrilled to have found an opportunity to get Noah back to Bandimere. 

The weekend prior to the Jet Nationals we took Noah and Luke to the movie theater to see Cars 3.  And Luke caught a germ and by Monday morning he was so sick.  Two days later Noah also was sick.  I knew there was no way I could take either child near Mike's wife, although it's always been my policy never to expose my children to others when they are sick, as I wish people would offer us that same courtesy.  A simple cold can be life threatening for Noah or those who have a medically fragile condition.  I sent Mike an email declining his beautiful offer to attend Jet Car Nationals with him.  And I thought it was over.  I had lost our one and only chance to get back to Bandimere. 

Mike's reply was incredible and left me stunned.  Not only was he tremendously understanding but he asked us to keep in touch that he might have availability for the Mile High Nationals.  I never ever thought that would ever be an option for us.   I got the boys well, and I rather confined them to the house for two weeks just to give everyone a fighting chance should Mike still have availability.  I hesitated until kind of the last moment.  It's so hard, I don't even know how to describe it other than the most humbling experience you could ever imagine when you reach out to someone you don't know and ask for their help.

Mike as warm and tender as he was the first time said he had been waiting to hear from me and offered us tickets so that we all could go and I could bring Noah's grandma and grandpa for an extra helping hand. However, Mike explained he would be missing the Mile High Nationals for the first time in twenty years due to his wife's illness.  It broke my heart as I know what that feeling is like.  I know what it is like to put your dream and love on hold because the storm of your life has rolled in.  It's not an easy pill to swallow, it crushes your spirit and almost feels like someone is stealing the breath out of your lungs.  During his family's own medical hardship, Mike still offered so much love and understanding.

In the middle of Mike's incredible offer of access to his suite for the event, HopeKids extended an opportunity to Noah to attend the races by way of invitation from Racer's For Christ - Win Light Kids.   It was kind of a pinch me moment.  They said we'd get to take a tour and meet the racers.  We were super excited.  It was like God said okay this a dream you have?  Well let me just put the icing on the cake for you.   We now had the ability to shelter Noah since he can't regulate body temperature and assist him with his sensory challenges and bonus he'd get to meet some of the driver's and hang out with them. Everything lined up just as if it were meant to be.

Walking through the track gates with Noah was a surreal moment.  Chris and I looked at each other in disbelief that we are at the Mile High Nationals... with Noah.   I was 18 weeks pregnant with Noah the last time he technically was there.   Everyone at Bandimere was certain I was having a boy even though I was convinced I'd was having a girl.  They predicted it correctly - just as they predicted he'd be our little racing buddy.   Noah received such an honor when our story about taking him to the Chevy races was published in Bandimere's 2017 Fan Guide.   We hadn't been walking more than a few feet when people started stopping us asking if this was the Noah they read about in the fan guide.  Noah beamed with proudly, he needed no verbal words to display how happy he was that people recognized him and wanted to talk to him and meet him.  He soaked up all the attention in the most adorable way.




John Bandimere Jr. And Tami Bandimere-Shrader also paid Noah a special visit in the suite, they had heard about his arrival.  Noah of course super excited as he remembered John from the previous year.  John offered him tender kisses and Noah looked at him I know wanting to thank him.  Everyone in the suite were so wonderful to Noah.  Mike owns a business called HIS Construction LLC, and his employees are really great people.  They welcomed us as if they had known us for years.  Sharing stories about how they all went to Kindergarten together and how Mike was the best boss - and they really meant it.   I was even able to spot Christy Emilyon and John Miller who are staff at Bandimere and really who we owe much of our thanks to as for without them there would have been no connections made to offer Noah any of these opportunities.
And we got to meet new friends this time.  Racer's for Christ (RFC) coordinated a meet and greet with some of the driver's in their pits.  Many of them inviting us back for a behind the scenes even into their trailers.  And for race fans like us... that kind of thing puts you on cloud nine.  The drivers and pit crew were all super awesome to Noah and to Luke.  All signing autographs for the boys, t-shirts, and even some rods and piston parts that were autographed.  True treasures. 
 Noah did remarkably well with his sensory challenges in the pits and even tolerated headphones on his head for part of the day.  He still had a few hiccups though in the suite.  The sunlight hit him wrong which caused a gag and vomit, and I a few people passing him quickly to exit triggered it once.  Although very minor I always worry what other people think who aren't familiar with Noah's sensory display.  I'm sure they wonder if he is ill and they likely don't understand he does this frequently as a defense mechanism, either when he's overly excited or something bothered him.   He can handle listening to flight for life land less than twenty feet from him, and enjoys loud music, but can't handle the sound of a barking dog.  I'll never really understand why he can tolerate some things but not all things. 






Racer's for Christ was so sweet, Noah's grandma was having some hip difficulties with lots of walking and so they rode her around in a golf-cart from pit to pit so she could be with us and enjoy the experience too.  They fully understand God's blessings and the miracle of Noah's life and they felt like we had always known them.  I'm so thankful to have connected with new friends at RFC as Noah can use all the prayer warriors he can get.  Prayers move mountains.  I will never forget any of them, and the special work that they do.  Their presence at the track was really wonderful, and it was like having God's hands of reassurance hold us through all of it.








Luke is a lot like me and picks his driver's based on car sponsors and car designs.  He has fallen in love with the Make a Wish car, and likewise the driver Tommy Johnson Jr.  and Jerry Savoie because he races alligators, and Noah has a soft spot for Lisanne Hewel (he loves the ladies), and he took a particular liking to Terry McMillian who was so thorough about describing the intricacies of his car in such detail.  Although, all the driver's we had an opportunity to visit were just beyond lovely to the boys.  I've always loved how all the driver's have such a great comradery with each other, and although they banter with each other they care about each other win or lose.




There is nothing better than watching the flames and the speed of nitro cars going down the track, it's such a thrill.  The jet cars were the finale for Saturday's race.  Jet engines literally shake that tower so fiercely it almost feels like it could crumble.  The shear power of it all is beyond cool.  The smoke engulfs the window view for just a moment and then this loud thunder, as fireworks go off behind them.  The entire suite cheered with amazement, awe and delight.  Noah celebrated too.  The finale.   We did it together just as we dreamed it to be. 

We owe so much thanks to Mike at HIS Construction LLC, and his incredibly big heart, HopeKids for extending the invitation to us and knowing how much this event would mean to our family, to RFC and Win Light Kids who give families like our unique opportunities at the track that we otherwise couldn't experience without their help, all the driver's; Jerry Savoie, Hector Arana Jr., Karen Stoffer, Tim Wilkerson, Terry McMillen, Tommy Johnson Jr., Scott Palmer's crew chief, Ashley, Alexis Deioria, Doug Kalitta and Clay Millican, Lisanne Hewel and of the countless pit crew who gave generously of their time and attention to us while they were in the middle preparing to race and to the Bandimere family and staff who always makes us feel like we're so loved.  It took a racing village.  But we dared to dream bigger - and we did it!

Love,



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

Friday, July 21, 2017

Dreamnight at the Denver Zoo

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Although it was a few hours before sunset I could hear the night's insects as we waited to check in for our invitation that was extended to Noah to participate in Dreamlights at the Denver Zoo.   Two zookeepers carefully approached children with special needs, their siblings, and families to offer them the opportunity if they desired to feel and experience a texture of an animal.  Well trained they sensed Noah wasn't interested, nor could he handle the sudden approach of an animal he wasn't familiar with or even a person he lacked to trust holding it.   He displayed a half of gag, his own independent animal warning that says back away slowly before I vomit on you.  The Zookeepers sensing Noah's apprehension made no further advancements and just allowed Noah the space he needed to admire from a distance.  Luke sensing his brother's apprehension followed Noah's lead and declined to pet "things" he hadn't seen before.  The Zookeepers remained in complete understanding and unoffended by either of my children's lack of interest to engage in the petting opportunity.

We didn't have to wait long before our names were checked in on the list for our attendance.  I was asked to pick a piece of paper out of a bucket on Noah's behalf that would tell us where his private zoo encounter would be.  We drew the Gates Wildlife Conservation Education Center.   It's not a typical stopping point for us when we visit the zoo with Noah so I wasn't sure if it would hold his interest or not as it's a place in the zoo that doesn't hold a visual animals on display but serves are more of a learning/educational/teaching environment.   We checked in at our selected designated time.  It was right outside the entrance gates. 
The zoo felt eerily abandoned.  The roars from the lions just across the walk way were intense and powerful.  It was almost as if they could echo throughout the entire zoo.  A noise that is easily drowned out by thousands of people that frequent the zoo during public attendance hours, leaving you only with muffled sounds of children laughing, crying, and running about to see their favorite animals that make lions sound like a small roaring toy.  The roars so fierce I could literally feel them shake my heartbeat - not out of fear, but more so with with intense power and strength.  They caught Noah's attention too as he startled then looked around as if he expected one to be walking alongside him.    The night was so still and calm.  I wondered where everyone else was.  It was empty, quiet and peaceful.


We waited for a handful of minutes inside the conservatory for our private tour to begin.  Noah was instantly mesmerized by the origami-like birds that hung from the ceiling.  He refused to take his eyes off them.  His body language indicative of his hopes they'd take flight in movement.  But they just stood still and he grew frustrated that he could not grab the hanging paper birds' attention with his laughter or high tone arching.  As we walked into the tour room, he still tried to look over his shoulder in hopes that just one of those paper birds would move. 

We entered a back room that had a host of little critters that were used primarily for classroom travel purposes.  Some that weren't quite able to join the rest of their kind for public viewing, perhaps due to a medical condition or mild deformity.  Noah wasn't a fan of being in closed quarters with most of them.   He again was invited to touch or explore some outside of their caged habitats and wanted nothing to do with it close up.   His classic gag and I'll vomit on you reflex aimed, primed and exhibited several times.  I reassured the zookeepers that this was classic sensory overload signals.  She understood and kept her distance still of course offering Luke the opportunity.   Yet, Luke still headed Noah's warning like the older brother who could not talk had already spoken words of caution by the use of his gag reflex.   Luke remained by Noah's side, as if he were seeking Noah's protection and guidance.




 We were able to see some really beautiful and amazing animals that we had not otherwise been able to see before.  We got to see a tiny foxes, a month old owl that still hadn't gained it's feather's, a turtle with a shell deformity, a snake with a spine injury, ant eaters that were eating pellets to mimic ants,frogs, spiders, armadillos, a prairie dog who was blissfully unaware of us as it dinned on sunflower seeds,  exotic birds, that were  amazing birds that were so loud and obnoxious and that liked to fling their poop at you even from significant distance.  Things you wanted to cuddle with, but that clearly would never cuddle with you.  It was educational and fun, and Noah was relieved when he had some distance between the smell of the ant eaters cages since they smell much worse than an angry skunk.   Our tour was so detailed, and our zookeeper guide so understanding and sweet.  It truly was a very special experience.


After our private tour we were allowed to walk around the rest of the zoo for two hours.  Occasionally we'd pass another family, but it was rare.  You felt as if the zoo had been given just to you.  Noah soaked it in.  He rarely gets to see as much as he'd like in a wheelchair among busy crowds.  He is much too low to the ground and people don't realize that he cannot see around them or through them or can find an empty spot in a crowd to get a peak at an exhibit.  He goes without seeing as much as I know he'd wish he could.  He laughed and squealed with excitement - he was overjoyed at being able to see everything as he should - easily. 

Mountain goats frolicked, the hippo took a leisurely bath, monkeys lovingly grooming each other before bedtime, cheetah's playing in the cool of the day.  The animals looked just as relaxed as we felt.  As if this was their downtime, their time to enjoy the lack of being on display without countless eyes starring at them.  They engaged with Noah through the glass of exhibits like they had been waiting on him all this time to be able to get alone time with him.  He made delightful sounds back at them, and they'd paw or follow him with interest.   Luke likewise in awe of being able to take the zoo slower.  We're so often rushed through something because there are too many people or Noah can't take the time to see something so we move on to the next exhibit.  He was also enjoying the incredible luxury of the experience.


We rode the train while being the only ones on it.  Three times in a row.  We just sat and stared at the crocodile that kept moving her eyes back and forth as if it were overly curious and it sat still up against the glass as to offer Noah a full length perspective of its greatness.  The seals slept on rocks as we passed by, unaffected at all by our presence.   We'd pass another family here and there, but everything felt so peaceful, so still and calm.


For a moment it was as if my mind went silent.  But in a really much needed way.  I'm always thinking and praying and thinking and praying and trying to figure out how to help Noah or what to do next.  Imagine your mind constantly on overload without an off button.  It's hard because you're always trying to out think the current problem or challenge before you for the sake and well-being of your child.  I rarely if ever get an opportunity to remember what breathing and living feels like, because I'm just so busy trying to survive it all.
I watched all the giraffe's being inquisitive as their long necks reached down as if they wanted to kiss Noah on the forehead.  They looked at me as if they were seeking my permission.  They were full of grace and unspoken understanding for what they were witnessing.  Animals so full of comprehension for a situation that most humans ignore - whether that be intentional or not.   I appreciated their grace, their love, attention and affection for my family.   It's quite amazing as when you have a child that is non-verbal you find lots of other ways to communicate.  Throughout the years I've grown especially fond of reading eyes and body language.  And the eyes of all living creatures speak volumes.
It's so rare when we can peacefully enjoy something like this as a family.  This experience was tremendously helpful for Noah to fully enjoy himself without being sensory challenges being decreased for him.  It was tailored beautifully to the needs of families like ours.  I'm not sure if we'll have a chance to ever be invited again but I pray that we are.  We really needed this.  In fact, I we need it so much more.  Dreamnights is an event that only happens once a year every June.  It's such a magical experience that I wish they'd do it even once a month all year long - something I'd even find a way to pay for if I had to.  It was really that special.  The zoo doesn't even feel the same now after we've done Dreamnights... we keep aching for that deep lion roar and the heartfelt concern from the giraffes...



Love,




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