Tuesday, October 10, 2017

Morgan's Inspiration Island Water Park: A Special Needs Utopia

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Morgan's Inspiration Island is the world's very first fully accessible water park had it's grand opening this year on June 17th.  Never in my wildest dreams did I ever think that Noah would be blessed with the opportunity to visit it, much less on opening season.  We learned of a local organization who grants children adventure trips through Noah's participation with HopeKids called Brave Young Hearts.  I sat on the idea for weeks before applying and delayed a couple weeks more, before actually submitting the required application for consideration.  I think I've grown too accustomed to bad news and the word no, and continual rejection in any form is painful.   But Papa Bear, one of the board of directors of Brave Young Hearts, was persistent and kept encouraging me to apply regardless of the all the reasons I could think of that Noah would likely be rejected.   A long shot I thought - Noah's wish to travel out of state to San Antonio, Texas to experience for the first time in his life a water park that was designed to be fully accessible for children just like him.

And to our complete surprise and extreme delight Noah was chosen for an adventure trip.  I think I had re-read the email about six or seven times before I really could believe it. Then I said don't get your hopes up because what if there are strings attached like you've got to pay airline fees, or hotel room or provide for things like our own food allowance or rental car - none of which we could do.  Yet, Brave Young Hearts set all our concerns at ease immediately taking care of every single detail of Noah's trip from big to small.   We were in just awe of this incredible and unexpected blessing to come Noah's way.

The timing was divine in it's own way.  It's been a hard year, financially, emotionally and medically as we've fought our way through a lot this year.  I would be lying if I said it didn't take it's toll on the entire family in some way.  Our reserves were low.  Nothing about our lives feels remotely normal.  And here Noah was given a chance to experience being normal - in a world designed around his needs and not the other way around.

Noah's trip was planned for the very last weekend the water park was open for the season. And we counted down the days as if we were waiting on Christmas.  Luke even more excited as Brave Young Hearts is such an incredibly loving organization that they went out of their way to include Noah's little brother Luke in this adventure trip and blessed Luke with a day at SeaWorld.  Which is huge in Luke's world.  Since around the age of three, Luke has had a rather unique obsession with ocean life - an in particular orca whales.  Brave Young Hearts coordinated lunch with Shamu and a day at the park.  A dream come true for both children - a parent's dream to see both of their children incredibly happy at the same time.

We hopped a plane (after TSA issues that are always present when we fly with Noah), said a little prayer that his wheelchair would survive the trip, and a leap of faith that all would be beyond incredible once we landed in Texas.  Our first night was a little rocky.  Noah always gags and vomits on take offs and landings, however he vomited a bit more than usual on this trip.  No one really knows why.  Noah's severe sensory processing disorder can be very unpredictable at times.  He never fully recovered from his SPD episode on the plane and wound up gagging and throwing up into the late hours in Texas, going though the only 2 sheets I packed for his special needs travel bed, three showers and 2 pajamas later.   We weren't concerned with Noah being sick - we knew this was sensory related, but nonetheless overwhelming for him and for us.  Chris and I starred at each other dazed and tired both hoping that Noah would rebound to normal to enjoy Morgan's Inspiration Island the next day.

We had a late start - sleeping in until 9:30am and missing breakfast.  But we got our engines running and Noah was full of smiles by the next morning.  He had settled into a level of comfort and was ready to explore the day and we were relieved that his SPD episode seamed to be over.   We hopped into the rental van (which was perfect for Noah's needs and felt like this travel security blanket while we were away from home), and headed out for a day of fun at Morgan's Wonderland and Morgan's Inspiration Island. 

We were drawn to the accessible ferris wheel.  I've never seen anything like it before anywhere.  Little bell shaped cabins with an accessible option to tie down Noah's wheelchair so he could enjoy the ride.  It was really windy so the cabin bells swayed quite a bit which can cause a bit of motion sickness... although Noah seemed to breeze through that more than the rest of the family did.  But he enjoys motion in a different way than the rest of us do.  It was neat to be able to do that with Noah - something that we can't do anywhere else in the world.  We rode the accessible go carts, played at a bit at the sensory village before we headed over to Inspiration Island which opened an hour later than the rest of the park.  
When you walk into Inspiration Island you are greeted with an attendant that assists you with your water park needs.  For Noah that meant he needed to be fitted with a waterproof wheelchair for the park.  Our attendant was Louisa and she was exceptional.  She looked over Noah and immediately knew his needs and what he would need for positioning and what size wheelchair he would need.  Let me tell you all that Noah's DME (Durable Medical Equipment Provider) still can't do this.  And Louisa - bless her heart - is simply amazing.  She is gifted and she cares.  She does her job so well.  Too well as I wanted to pack her up and bring her home.  The girl knows her equipment and what children like Noah need. 
Within minutes she had picked out the right sized Convaid Waterproof wheelchair for Noah, fitted him with beaded head support and the right sized harness.  She also knew that Noah would need hip positioning and had a small wedge pillow but then went even further as she didn't want him sticking to the plastic so she lined it with a piece of neoprene fabric.  She had covered every single important detail.  Louisa was pure gold. 
The changing stations are magnificent.  There are several of them with large barn doors, with enough room to accommodate an entire family with all the changing table accommodations one could ever dream and hope for.  Some rooms had ceiling lifts, some had fixed tables, some had power tables that lowered and raised.  If you had an ADA need it was all there.  They even have air powered waterproof power wheelchairs - and those are so cool.  I mean super cool.  Whoever dreamed that up deserves a high five and a fist bump.

We hadn't had lunch so decided to have lunch at the park.  There are actually two restaurants at Inspiration Island but only one was open since it was the closing weekend for the park.  They had a great variety to chose from, typical amusement park food, but fun for the entire family.  The benches were all accessible and in the shade.  After we had a bite to eat it was then time to get our feet wet - literally. 

Noah had never seen a water park before, and never had been splashed by water or or near fountains in his life.  So it was a completely new experience for him.  The first time he felt the water from a small fountain he laughed and instantly understood water equals fun.   Happy squeals and infectious laughter followed and my heart just swelled.  Thank goodness it was a water park because my eyes swelled with happy tears (and certainly I didn't want the rest of the world to notice).  These are the kinds of experiences everyone dreams about when you have a child like Noah.  A parent like me literally lives for our child's happiness.  Noah is forced to enjoy the world around him differently because of his physical limitations but at Inspiration Island nothing is out of reach for him.  Nothing.  He can do every single activity there with ease.

We decided to do the water ride before the remainder of the water park.  The water ride is so cool.  It is fully accessible too with a hydraulic ride that raises and lowers Noah's wheelchair so he can ride in the back with us in the front as the lazy river ride passes by fun animals, music and sound.  It was relaxing and wonderful and Noah loved it.  We only rode it once due to time, and I wish we had been able to ride it several more times.  I really loved it. 

Most of the water park is not heated.  Only one attraction of the park is heated.  But, we did all the non-heated areas first and the water was comfortable - likely due to the hot temperatures in San Antonio.  But the entire family was comfortable with the water temperature.  We splashed, we played we ran around.  Luke got attached to a very small water slide and playfully engaged with other little kids just like him.   Everything you could ever wish for is at Inspiration Island - comfortable cabanas, an abundance of lawn chairs, multiple accessible bathrooms, incredible changing rooms, waterproof wheelchairs both manual and power - loving attendants, great food - loads of smiles from all families there.  It's like special needs utopia.   There is not a single thing that they could have done any better. 
I wish so badly that we could find a way to give this experience to Noah yearly.  It is something I really think that children like Noah really need in their lives.  It is such a magical place and children like him are so deserving of this happiness.  They have to go through so much - too much.  And we all should strive for this pure joy that exists at Morgan's.  I wish a place like Morgan's existed in every state.  It's so needed.  Morgan's is a living dream.  We stayed until they closed which was 4pm.  We didn't want to leave.  We spent the last few minutes at the heated section of the park.  Oddly enough Noah couldn't get his body to go from non-heated to heated.  You would think it would be the other way around.  But since we experienced the heated park last his body actually shivered in the heated section.  We've always known that Noah can't regulate body temperature but it was curious to us that his body actually shivered in the warm water and no where else - almost as if his body was confused going from non-heated to heated.  The opposite of how the rest of us would react.  We decided it was probably best to bundle him up and dry him off although he certainly didn't want to leave and started to give us the pouty lip.  Which of course breaks your heart every time knowing that his fun has come to an end and that I can't bring him back the next day, or next week or even likely next year no matter how hard I wish for it. 
Brave Young Hearts provided Noah with such an incredible blessing and we are so grateful for the love and kindness that they gave not just to Noah but the entire family.  Out of a place of great pain with the loss of their own child, they are providing so many beautiful memories and experiences to others so that they joy they are missing can live on for others. There are sometimes not enough words to ever express a proper thank you for the magnitude of it all.

Morgan's Inspiration Island is a place you must visit.  You won't be disappointed.  It is pure perfection. 


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

Wednesday, September 27, 2017

The Tiny Terrorist: How TSA Keeps You Protected Against Wheelchair Bound Children

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Last week traveled for Noah's adventure trip sponsored by a local organization called Brave Young Hearts.  Noah's adventure was to Morgan's Island Adventure Water Park in San Antonio, Texas.  Noah was also gifted with a day at Seaworld with his little brother Luke.  The first hurdle of course - and the one we most dread when traveling with Noah was the airport.   This time we decided to take our own vehicle and leave it in the airport parking garage.  That turned out to be an excellent decision and way more convenient than attempting to wait on an accessible taxi or get Super Shuttle to coordinate a ride.  We were waiting sometimes hours for a ride home - even after scheduling and pre-paying for ride service when we travel.  And although the price tag was $96, it still was less than half of what we normally have to pay not including tip to coordinate an accessible ride to and from the airport.

Yet, even with the convenience of parking on site, we knew it would still be a challenge with the number of bags it takes to travel with and getting through TSA.  We did certainly underestimate the hassle of TSA this time.  We measured it up against past experiences which were certainly problematic at times, but we still weren't prepared for for what was in store for us on this trip.  I call TSA Cares religiously when we travel, and give them the same speech each time; medically fragile child, traveling with medically necessary needs like liquids and pureed foods and often medications, has spastic quadriplegia cerebral palsy, cannot be transferred out of his wheelchair at TSA check points, etc.  I even get an a TSA attendant call upon arrival and departure confirming my contact with TSA Cares and their acknowledgement of our travel plans.

We have now flown with Noah a total of twelve times.  Each time we travel we always have a unique set of challenges and obstacles.  Sometimes it's the rental car agency who failed to realize we were serious when we said we really need a wheelchair ramp accessible vehicle and no a regular van doesn't work to tie down his wheelchair.  Sometimes our hotel room isn't accessible, sometimes we forgot something Noah needed at home and we're shopping immediately for it when we land, and sometimes it comes in the form of being bullied by TSA. 

Two flights ago TSA demanded Noah be removed and separated from his wheelchair.  I was threatened with arrest if I failed to comply.  They took Noah's three ounce apple juice away from him that he was drinking in order to settle and minimize his sensory gag and vomit reflex.  Once removed, Noah immediately vomited all over me and himself.  An older  gentleman behind us was also removed from his wheelchair and TSA refused to give it back to him despite desperate pleas from his family. TSA refused to check him until they were finished with Noah and the detained him for an hour.  With no real reason to do so other than they could.  I went to change a vomit soaked Noah while he was still in his wheelchair, his daddy briefly running to the restroom to wash his vomit soaked hands.  Chris comes out of the bathroom and asks where Luke is and I say holding onto the back of the wheelchair.  Except I look up and he isn't.  I scream Luke's name.  And nothing.  We're frantic not knowing where he went.  Within seconds Luke calmly marches out of the women's bathroom saying he had to go pee.  And I'm like is this really my life? As I'm trying so hard to care for one child and nearly lose the other at an airport.

I of course came home, immediately filed a complaint, video recordings of Noah's TSA check were reviewed and we were issued a written formal apology with the "well do better next time" verbiage.  Basically an acknowledgement of they did wrong but didn't care much about that fact. 

Although we've had some bad experiences with TSA I still wasn't prepared for what happened on this trip.  Per usual, Chris and I removed our shoes as required by those under the age of 18.  Noah does not travel with shoes, Luke kept his on.  All of our baggage was screened including Noah's medical bag which is clearly marked "medical."  It contains his food pouches - typically six of them to get us by until I can get to the ones that I bag check, 2 apple juice boxes, his medical cup, plastic spoons, topical medications, Motionease, diapers, wipes, and facial towels, antibacterial wipes and gels, and a vomit bag kits.  The other bag carries Noah's Ipad, the camera, my driver's license, keys, antibacterial, changes of clothes for Noah as he soils them quickly and requires multiple changes when traveling, 2 chux, and charging cables or the cell phones.  Luke had a carry on bag with nothing but his clothing.  Everything else was checked baggage. 

TSA always gets edgy as they immediately try to separate Noah from me at the scanner.  I tell them I have to go through the scanner first and then Chris will push the wheelchair through so that one parent is always with him.  They start to always get confrontational with me because I refuse to be separated from Noah even briefly.  Noah is so involved that it only takes a second for him to aspirate if you don't know how to handle the situation.  I'm ushered over to a place where they swab down and pat down every piece of Noah's wheelchair, which makes him uneasy as he can't handle strangers too close to him.  I warn them he'll throw up if they don't give him space.  They swab his hands both of which I have to lift up for them because he cannot voluntarily raise his arms.  This time Noah tests positive for explosives.  This is the fourth time he has tested positive for explosives in all the times we have flown.  All other times Noah 's pat down of his wheelchair suffices and we're let through. 

However, this time a supervisor determines that because Noah tested positive for explosives that it is mandatory that I undergo a full body search since I was the last parent to touch his wheelchair.  Only Noah's hand tested positive not the wheelchair.  I'm given no other alternative.  I am asked if I'd like a private room for what they are re going to do and I decline as they tell me it would require me being separated from Noah and the rest of my family.  I'm ordered to spread my legs and hold out my arms.  I'm instructed to lift my shirt and allow the TSA agent to go underneath and between both breasts twice.  Two hands run the length of the insides of both legs, while an open hand rested on my inside of my crotch and wasn't at all brief.  Part of me is in disbelief this is happening all because I have a child in a wheelchair, I feel numb, helpless and slightly embarrassed that I'm being required and subjected to this invasive search. The TSA agent is unsatisfied and asks me to unbutton my pants and pull them down hip level exposing the top portion of my panties and then combs through my hair, then my neck and down my back, I feel two thumbs down the center of my bottom spreading both sides apart, with hands moving down the front of my underwear while the TSA agent checks  me once more from head to toe as I'm ordered to spread my legs wider and keep my palms facing upwards.  It wasn't so much the modesty part that was difficult, but the awkwardness and uncomfortability of having to consent to having a stranger touch you in this vulnerable way.  We are forced to give up our basic freedoms and being forced to subject to this process.  I can tell you that what happened to me was far beyond a basic search that I was intentionally touched in a way that I shouldn't have been all disguised in the name of "security."

My full body search isn't enough to satisfy TSA, however.  They then indicate that Noah testing positive for explosives would then further require a separate swab of everything in our bags.  Everything was dumped out in trays.  The camera was removed from it's case, Noah's sterilized medical cups and spoons each dumped out voiding them from being sanitary, clean and ready for use, Noah's baby food pouches were opened and tested making them unusable. IPads separated and given to different TSA agents.  All of our belongings spread out to no less than seven agents while we stand there stunned.  Noah's car seat was tested for explosives not once but twice even though the first set of swabs did not come up positive.  Luke looking on for reassurance that everything was going to be okay as he sensed our distress.  Noah's gagging growing stronger indicating he couldn't hold off his vomiting much longer.   We're finally released and cleared 48 minutes later.  Other passengers looking on at us throughout the ordeal as they went through their own TSA checks I'm sure wondering what all the fuss was about and why so many agents were devoting so much effort to this tiny terrorist in a wheelchair and harassing his family. 

TSA still unsatisfied requires an escort attendant to our gate, as if we are still guilty of an offense.  We make it to pre-boarding ontime.  I am still stunned and struggling to absorb what I just endured.  I just want the TSA agent to go away.  He asks if I had any feedback for their services.  I think my response was "are you kidding me?"  I lacked the words, they were there hot and heavy under my tongue but my voice squished out of me like a child who had been punished and sent to sit in a corner in silence.  I didn't think I could have a conversation without breaking down in frustrated tears.   The TSA agent was extremely young and sensed the anger and sadness in my body language and retreated. 

I called my mom, the only person on this earth that knows me well enough to feel my troubles in my voice.  It's comforting to talk to her about it before I quickly board the plane and she understands that I'd do anything for Noah - even subject myself to a full body search in public.

I tried to put it out of my mind the entire flight, but my mind just kept dwelling on it - as if I could somehow have changed it or influenced that outcome what occurred.  I was heated because I felt the process of TSA to be so incredibly unfair.  A real terrorist has a better chance of getting past TSA than a child in a wheelchair does.  Only certain individuals have to remove shoes.  One can even pay $85 per person for a five year "pass" or what is referred to as a TSA PreCheck, to get around having to take your shoes off, remove your laptop or be subjected to a liquids check.  That seems like a small price to pay for a real terrorist to get around any invasive TSA check - heck there is no swabbing even necessary of your hands for an able bodied person.  But Noah who can't even hold an object in his hands, who can't sit, walk, talk, crawl or self feed could be a danger to those flying and TSA thinks that you need to be protected against families like ours.
I put it out of my mind the best I could for the remainder of the trip, I didn't want it to overshadow the incredible fun and joy that we all were gifted with experiencing.  I had to build memories with my children because at the end of it, that's all we'll have left and can take with us in this life.   I thought perhaps we had been through the worst of it.  But that wasn't the case.

Upon getting ready to come home Noah's hands were once again swabbed.  He did not test positive this time for explosives.  His wheelchair was also swabbed and patted down twice, it also came up negative for explosives.  Chris gets pulled aside and told that Noah's pureed baby food is flagged and that if we want to be able to take it the plane with us even though it is medically required that I have to be subjected to another full body search.  Chris sees the tears well up in my eyes and gruffly says no to the attendant and says if there is a full body check required then they'll have to do it to him.  I feel a sense of relief, but just as sad for Chris as I was for myself.   I tell the TSA agent that we've never had to do full body searches because of Noah's food before or because he's tested positive for explosives in the past, and her response was short and curt and said these have always been the rules even though I know that isn't the case. And my suspicions were correct as I came home to read an article about TSA's new invasive full body searches.

Chris's crotch was simply grazed and a full open and resting hand wasn't required as it was for me.  They are quicker and less through with him.  They seem uninterested and slightly less interested in him since he volunteered and demanded to take my place.  Chris stoically handles the situation and makes eye contact with me to reassure me that we'll get through all of this together - Noah's team.  You can't break us no matter what you put us through.

I think the worst of it is over.  I'm relieved and anxious to get as far away from TSA that I can.  The plane was running ten minutes late and still unboarding previous passengers from another flight when we got to the gate.  A heavy-set lady in a wheelchair waits as if she's stalking the gate for first signs of boarding.  The Southwest gate attendants look to us as they recognize our needs deserve first priority and attention.  We're allowed to board first as we always are, so that we can install Noah's special needs car seat and then transfer him from the wheelchair onto the plane.  While we try to do it quickly it does take us a few minutes.  The plane isn't full.  40 seats exactly remained unassigned and empty on the flight.  Noah has to sit against the window per regulations with his car seat, his dad next to him.  The medical bag next to Chris.  Luke and I are a row across leaving the end seat isle open on both sides of us. 

The lady in the wheelchair follows behind us and is visibly angry.  She blurts loudly out of her mouth "well I guess I'm screwed with not getting a front row seat."  She then briefly pauses and looks over at Noah and proceeds to say ""oh it's because we have a retard on the plane." Do to her size she requires two seats and there is only one on each side of us.

I wish I could tell you that each time someone says something like this that I could be rock solid like stone.  But, I'm not.  I wound easily even though I hide it.  Her words feel like a dozen swords hitting my chest.  I well up with tears out of a combination of all the feelings I'm experiencing.  While the anger rises to a place where I want to tell her just how incredible that miracle child is that just boarded the plane, I can tell by her demeanor and loud and obnoxious behavior that me uttering even one word to her would have caused a massive argument and fight that would have likely gotten one or both of us kicked off that plane.  I sit down in silence.  Stewing in pain and holding it all in.  I focus on how pretty the night flight is and all the lights below us as we fly.  I kept thinking and wishing and quietly asking God for just an ounce of comfort to get me through it.  I contemplated in my head giving this lady a piece of my mind when we landed.  I may have even followed through except we were rushed rather quickly off the plane since the Southwest plane before us had a brace for impact landing crisis and emergency vehicles were everywhere around us.  I just wanted to get Noah off the plane and my focus quickly shifted from that verbally uttered sentence of cruelty onto Noah's well-being and cleaning him from the vomit that always happens upon landing.

We were on the ground and home and we had endured and overcome the hard parts.  That's really what we have to focus on is that we don't let the hard times overshadow all the good, incredible and beautiful moments.

For all of you special needs families that have been faced with similar TSA experiences or sadly will have to undergo something like this in the future all because you have a child in a wheelchair who is medically fragile, my heart goes out to you.  I understand.  And I know how unfair this all is.  I wish I could change it for me and for you.  I dream of things being easier for us, I wish that having a child with special needs didn't always feel like there were consequences attached to it.   I only see TSA's practices getting worse, and all the parents who reached out to me when I shared my most recent experience - I'm just so sorry.  This is so wrong and my heart aches for all of us.


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

Monday, September 11, 2017

You Couldn't Have Known

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You couldn't have known the multitude of challenges I faced in that single day; entire family Medicaid renewal forms, SSI disability verification forms, a letter saying that something negative was reported on our credit report and endless emails regarding my son's affairs.

You couldn't have known that I was running on less than three hours sleep while tending to Noah's various difficulties in the night and how exhausted I was regardless of the numerous cups of coffee that I had.

You couldn't have known that I received a phone call from Noah's attorney that day confirming that he received my first legal payment in order to sue Medicaid for continuing to deny my son his medical needs regardless of an Administrative Law Judge ordering them to reverse their denials, and the State continuing not to yield to those orders but instead file Exceptions to initial Decisions to void any favorable ruling on Noah's behalf.

You couldn't have known that our account had been compromised for the fourth time in six months, which left us temporarily without a positive balance in our bank account and without debit cards until new ones could be ordered.  And that we're still trying to rebuild our credit after bankruptcy, leaving us dependent on our bank account.

You couldn't have known that I spent a large portion of the day evaluating my parenting performance to two differently able bodied yet equally beautiful children. 

You couldn't have known that Noah's nutritional order came incomplete with a note that stated his supplies were on backorder for an undetermined about of time.

You couldn't have known that I was kicking myself for not buying groceries early in the week before our account was breached leaving us without adequate dinner options.

You couldn't have known that I was heavy-hearted about having to use the cash that I received as a result of selling things around the house to help Noah with his out of pocket medical and equipment costs and needs for dinner that night.
You couldn't have known that I was frustrated that the only four disabled parking spots were full and two of the cars didn't have handicapped plates or a placard and were parked illegally, leaving me to having to take up two regular parking spaces in order to get Noah out of the van. 

You couldn't have known that awkward feeling when we entered the restaurant and the wait staff struggled to find a place to seat us for dinner as we watched several other parties be seated before us while we patiently waited for an option.

You couldn't have known how we frequently feel invisible and how we are merely an inconvenience to everyone.

You couldn't have known how terrible I felt when the only table option there was required your entire large party to rearrange yourselves and fold down the leaflet of your table so that Noah wouldn't swing and hit his arms at dinner while he was sandwiched between our two tables.

You couldn't have known how I was dwelling on the fact that our seating arrangement impacted you in some way and how sad I felt because nothing about our existence feels normal.

You couldn't have known that I took notice of one of the children at your table - a little girl so tiny and sweet who watched so lovingly as Noah's daddy fed him.  And I thought to myself that her loving and tender expressions meant that she was destined to do incredible things in her lifetime with the kindness she was born with. 

You couldn't have known that my hamburger was the first meal I had eaten that day and that I was so incredibly hungry that we decided to splurge on a $7 appetizer even though we thought twice about it.

You couldn't have known how happy Noah was with his seating position and being able to have a large big screen TV in front of him so that he could watch a football game at dinner. 

You couldn't have known that I admired your large dinner party and convinced myself that all of you were this incredibly close family that would always be there for each other and how I wished we had that. 

You couldn't have known how important it was for me to thank you for being accommodating and kind and not overly upset that you had to arrange your table and move it to make room for Noah when you got up to leave.  And how you put my soul at ease when you told me no thanks was necessary and that you thought we were great parents.

You couldn't have known that I cried when the waitress came over to our table after you all left to tell us that you had paid for our dinner and didn't want us to know until you had left. 

You couldn't have known that you were the only person who has ever done that for us and how incredibly touched we were that someone cared about us in this beautiful way. 

You couldn't have known that you made us feel loved and cared about even though we were strangers, and that in so many ways you were an answer to our prayers after a long and hard day.

You couldn't have known the difference that you made. 


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

Sunday, August 20, 2017

When God is Quiet

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I was alone most of the day yesterday.  While that might sound like a dream come true when you lead a rather exhausting life that comes along with being a special needs parent, I assure you it's not.  Being alone with your thoughts isn't always wonderful.  It gives me extra time to think about the things far beyond my control, it gives me more minutes to marinate in sad and difficult feelings, and it seems to solidify the knowledge that I'm truly alone in all this.  God has been exceptionally quiet in all this for sometime now.  As I continue to pray for answers on how to provide the very best life possible for the miracle he entrusted me with.  Yet, He continues to ask of me that I show up each day regardless of the hurdles, road blocks and difficulties that continually lay ahead.  And I do because I have faith, hope and understanding that everything is in His time, not mine.  Yet, none of that changes the struggles that are before me in order to help Noah.

As I was driving to my first errand of the day to purchase more frozen cheesecake for Noah, which has become his evening staple after every dinner, I seen people alongside the road holding various signs.  Some over the recent racial tensions over the Confederate Flag, some over our various political issues, and some condemning terrorist attacks.  All of course receiving more response from passerbys and honks from cars than the man on the street with his sign and pleas for help in order to feed his family.  The world is so distracted that it fails to notice the smallest of struggles.  We can't see what is directly in front of us.

It's much like that for the special needs community too.  Our challenges and struggles are easy to forget, our voices get lost in all the outside noise.  We're out of sight out of mind.

I get to the parking lot of Sam's Club to buy Noah's cheesecake as I watch people fight over parking spaces.  All the while my soul wishes to scream to both parties that they should be so thankful that they were gifted with the blessing of the ability to walk no matter if it were two parking spaces distances longer to the door.  A physical ability my Noah will never be able to do.  Another woman in a hurry pushed me and my cart aside in her hustle, never looking back to see if I was okay or to say sorry that she bumped into me so aggressively.   I stayed quiet nursing my leg that was bruised in the incident, although my feelings were likely bruised more because I had hoped for that "so sorry, I didn't mean to,"  which would have made all the difference.  But instead it rather added to the theme of the day that I was feeling rather run over by the world - I now simply have a bruise to prove it, I suppose.

I got Noah his three cheesecakes and two packages of paper towel since Noah's sensory issues have been on overload and I'm going through paper towel these days like water trying to mop up his gagging and vomit episodes at home.  I can't even change his diaper these days without him gagging over the smell no matter how fast I do it, he always throws up on me.  If he even feels or hears the plastic ruffling of a chux that will even cause it.  I paid and left, I sat in my car briefly just watching people.  Everyone in a such hurry.  Like little ants on a mission but do they even know what that mission is?

I stopped by Natural Grocers on the way home.  I have made a habit now taking only one reusable bag into the store and filling it instead of a grocery cart.  I've convinced myself that whatever I can fit into one bag I can afford, no matter how heavy that bag gets or how much I try to stuff in it, that seems to be my goal.  I picked up odds and ends. I was rather directionless and without a clear mental note of the things I would need to get through the week.  Yet I filled that bag with things I anticipated we would need; Greek Yogurt to make Sunday morning pancakes fluffy, bread so I could make grilled cheese, bacon, eggs, and cheese.

I couldn't resist the urge to go next door to Two Rivers coffee shop. While the idea of coffee sounded good, what I really wanted was to see the heart that they do on top out of the creamer so that I could remember I was in some way loved.  Even if, just by a cup of coffee.  I stared at that perfectly decorated and heart adorned coffee for a few minutes before I was willing to put a lid on it and drink it.   I just kind of looked at it in awe.  It was heavenly and my only regret is I didn't get two because well, you can neither have enough love or enough coffee.

My last stop was to Kohl's to find my mother a birthday gift with the Kohl's cash I had been staving.  I'm not even sure how I got there other than the car was on auto pilot.  My mind heavy with the things I still need to accomplish; filling out SSI forms, dealing with denials, calling for a quote on something needs, reaching out to equipment vendors, trying not to be disappointed that Noah's fundraiser is going nowhere, the laundry, fixing dinner, washing Noah's food soaked chair, bathing two kids, cleaning up the kitchen, wiping down Noah's mats....

There is no shut off button for my mind.  It races as if it's trying to constantly troubleshoot.  And in the middle of it all I of course stop to pause and say where are you God?  You're still so quiet.  Why are you being so quiet?

I was really lucky and found something right away that I think my mother will adore.  I'd tell you what it is but she'll likely read this blog (as she faithfully does), and that would give away the surprise.  I felt like I found a really great gift.  I was walking to the car feeling really like a non-event - insignificant, dull and without any real importance except to my children.  And then I looked up and seen this note attached to Noah's magnet on the side of the car.  And it read:
"You're Right!  Amen.  May God be with you always!" 

I just cried right there in the parking lot, without really caring about what people thought.  Finally God said something.  The note had no name or identifying information to it.  And I'll likely never know the person who left it.  But if you're out there and maybe reading this someday - I want to tell you thank you.  Thank you for having the courage to think of us in such a beautiful way. Thank you for lifting my spirits although there was no way you could have known the emotional load I've been carrying.  You ended my day with such grace and love, and something so small really means so much.  I will save that note in Noah's hope chest, and will remember it always


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

Don't Rock the Boat

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The couple of years have been particularly challenging.  I suppose it's like the plot twist in special needs parenting.  Over two years ago I started to ruffle feathers with my knowledge of unfair practices and mishandling of tax payer dollars designed to assist those with special needs, abuses of discretion and non-profit organizations and third party agencies who are managing Medicaid dollars.   My parent advocacy role and efforts led me to information that is concerning.  Noah's accounting records didn't add up, his Community Centered Board was reporting he was using much more than he ever had the chance of receiving, they refused to change their accounting records despite my requests to accurately reflect Noah's true expenditures. (Now I never see financial reports for Noah).  I challenged practices like CCB's (who manage Medicaid Funded Waivers) that taking a 3.5 percent out of our children's funding for any service or item they approved seemed to be a shady practice (although legal until legislation forces it to be otherwise), and putting it in their pockets.  It's the "cost of doing business they say."  So your child never has the potential of ever using a full CES Cap out of the waiver since they pocket a portion for themselves.  I walked into this meeting with a State representative and the Executive Director from a well known local advocacy group and a multi-page agenda - aimed to make things better for Noah and for other families.  Instead what I wound up doing was identifying myself as a "problem parent,"  who knew way too much about what was happening under the rug.

While I was assured the discussion at the meeting would have no repercussion for Noah - it most certainly did and within less than a week he was given his first denial in the form of an email with a "gotcha last" tone in the mail from the very person we conducted that meeting with.   Multiple meetings later with various representatives of the State's Executive Team that manages Medicaid,  Noah then found himself with a three person panel unique just to him and no other child in the State to review all of his requests.  The team unanimously enters denials now on Noah's behalf.

A year later I grew even less popular, finding myself just by chance as front page news of the local paper, and on a news television station discussing the mishandling of funds and supporting a legislative bill called SB-38.  A transparency bill as we called it that would force the State and CCB agencies to undergo public audits to document where all the money actually goes that doesn't come to our kids... one CCB got their hand openly caught in the cookie jar for personal spending.  Although I suspect all twenty CCB's across the State also have their own undiscovered cookie jars.  Of course within less than twenty minutes after the news stations started calling Noah's CCB for comment, I received a phone message that I still have saved to this day stating that anything and everything - even "anticipated" items that Noah might need would be denied.  While SB-38 was since finalized and passed and now even includes a confidentiality clause for parents like me coming forward so they aren't identified and targeted like I have been, it is now a wait and see if any CCB will willingly comply with it.  One must raise an eyebrow as to why the State was adamant about parent identification.

I counted the other day the number of appeals I've filed for all of Noah's denials.  Eight of them in the last two years, receiving a 9th denial in the mail Monday.  This doesn't include the things that were denied that I simply didn't have the fight drive to file an appeal on, or denials that had a very grey area - like the denial to fund Noah's orthotic shoes.  EPSDT's code only reimburses them at $43.  They cost nearly $400, his CCB refused to pick up the tab saying EPSDT should fund them.  A war on funding categories too low to help families like mine both agencies just point fingers back and forth at each other until ultimately it becomes an out of pocket cost.  I knew an Administrative Judge could do no more for me should I had filed an appeal because his or her hands would have been tied in that case.  A Judge could have done nothing about the low reimbursement category rate for othotic shoes, no more than he or she could force Noah's CCB to pick up the difference.  I knew I had no real legal leg to stand on - even though it sucked all the same and that it was a medical necessity.

But for all the cases I believed a Judge could hold their feet to the fire and see that these requests were really medically necessary and within the scope of their power to reverse an unfair denial, I filed an appeal.  The cases drag out sometimes for a year or more - especially if the State files motions for continuance with the excuse they can't get their evidence packet against you done in a timely manner.  I prevail in all of them.  And various Administrative Law Judges continue to rule in Noah's favor.  Yet, the State has the power to overturn any Judge's ruling and they continue to do just that.  They habitually file something called an Exception to Initial Decision and when they do that it goes back to the very agency that denied it in the first place.  It doesn't matter what your reply is - they've already put you in check mate.  And they'll sit on it weeks to months before mailing you their Final Decision which always reverses the appellate Judge's decision.  Crazy that they can do that right?  Renders the appellate process moot.

No one yet though seems to have it on their radar that they need to take this power away from the State.  Once a matter enters in a Court setting it should remain there.  And a Judge's ruling should stand to be significant. 

For years I've shown and documented what has been happening to Noah.  What I believe is direct retaliation and retribution for speaking out.  Something the State and Noah's CCB do not dispute nor disagree with on any Court transcript.  They are using me as an example to show others what happens if you come forward, and to punish me at the same time for doing so.  I finally got the attention of Colorado Disability Law Attorneys, who agreed to take one of Noah's appeal reversals and hopefully a second one as well.  Disability attorneys are no obligated to take all cases, and certainly I grew nervous when I heard over the phone "we feel you're fully capable of handling things."  And yes, while I'm a strong parent and am not the norm because I did work in District Court for so many years before Noah's birth, even the strongest still need help.   Disability law attorney services come at no cost I still have to pay a filing fee of approximately $224 each time a case is filed.  I've signed promissory notes that I now owe in legal fees.  But I'm so desperate for the help I had no other choice.   This forces the matter back to District Court - in a Court setting where it should have always remained.  But legal cases are slow and we could be at this for another year or so before final resolution, all the meanwhile Noah continues to go without the medically necessary things he needs for his quality of life.

Now I find myself researching the options of filing a Civil Rights Violation and Medicaid Fraud Complaints because I don't know how to get this cycle to stop.  The State is showing no signs of easing up on me or assisting Noah who has a high level of needs due to the severity of his disability.  No matter who I've talked to with it be political representatives, advocacy groups, the State itself - nothing changes.  Legislators say their "hands are tied," State officials say "they'll look into it.," Advocacy agencies - while yes they care haven't been able to find away around this either for me.

It shouldn't have to be this hard.  Parents like me shouldn't have to fight like this. 


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

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. 


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!


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