Monday, October 10, 2016

A Fall From Nowhere

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A little more than forty-eight hours ago, Chris and I went downstairs to try to troubleshoot a new storage plan for Noah's adaptive equipment.  Cumbersome and bulky there is no really easy way to just tuck in a corner until it is needed in Noah's day.  After less than a five minute conversation about it, we turned around to see this little grey spot on our blond tiled floor.  As we approached it was pretty evident what it was - a baby mouse only days old, with fur but it's eyes still closed.  I thought for sure it was deceased - it wasn't moving, still and quiet it just laid there.  Until I got closer and realized it was breathing. 

My heart sank.  What on earth was I going to do with an infant abandoned mouse?  And I knew where there is one there is usually more. A thousand things ran through my mind.  Mice can carry viruses  - and what do I do with a breathing baby mouse?  In the moment I asked Chris to get a Tupperware dish and poke holes in it.  Deep down knew I only had one real option for someone like me - I had to try to save it. 

There was absolutely no trace of any other mice in the basement.  Because Noah is so medically fragile our home is pretty spotless - or at least I break my back trying to make it that way for him.  There were no droppings - no signs of anything.  It was as if he fell from the middle of nowhere - and so he did.  Upon dragging out a ladder and evaluating the top of the wall, we found a small hole in a gas line that led to the fireplace, a likely source of entry and another deceased litter mate on the ledge.  This little mouse had fallen eight feet to the hard tiled ground and survived against all odds.  A miracle in itself - I convinced myself that was a sign that this mouse had a bigger destiny - and that without a doubt it was meant to survive.

A rodent - but one with a purpose. 

Is there such a thing?  My mind said there was.

A tremendous detour in my day I rushed to the pet store, quickly threw down $25 that we needed for weekly groceries, for a critter keeper, puppy formula and paint brushes for feeding, I came home to save the day and accepted the adoption of the orphaned mouse challenge.  I figured the first twenty-four hours were critical.  If I could make it past that, then he'd be home free.  My goal:  To nurse it to independence and set it free.   I could do this.  After all I'm an expert caregiver.  Internet research said feed it every two hours, use a paint brush dipped in formula, rub its belly with a q-tip for digestion... not too bad.  And I can't deny it - I added extra tender loving strokes so it didn't feel lonely and knew that it was in some way cared about.

Although I was slightly worried as I thought maybe it might have a bloody nose, I decided it had just scratched itself accidentally and was minor.  It was very active, healthy, thriving and strong.  A fighter.  Feeds were going really well, and I faithfully woke up in the middle of the night - even in between Noah's needs in the night, which further contributed to my level of already existing sleep deprivation - just for the mouse.   Last night the mouse seemed a little bit more lethargic - but I assumed it was tired and sleeping, still active but slightly more time to get it excited.  The morning still active I gave it breakfast and then without warning it started to gasp, and have labored breathing.  Immediately I was fearful that I had done something wrong - had it aspirated while feeding? And then it just passed away in my hands - just like that.  It was over.

And then this incredibly crushing feeling of failure.  And an immediate question of purpose.  If the mouse had survived falling eight feet, only to pass away two days later, then why did God allow him to survive the fall in the first place?  I told it's little lifeless body how sorry I was.  I ached for it to come back to life. A silly mouse - that I would never want for a pet - yet I was mourning the loss or trying to foster and care for this tiny little life - less than an inch big.  his head no bigger than a fingernail.  A small helpless, blind life.  Gone.

So what is the lesson in all this?  Besides outing me as an overly sensitive and compassionate, if the end result was that it didn't make it - then why did it survive that fall anyway? 

I'm still guarding Luke and Noah's childhood.  As they both inherited their mother's sensitive nature and the overwhelming feelings of the disclosure of death is too much for either of them to process at this age for who they are.  And if I can spare their childhood just a pinch longer from true understanding of it all, then I've bought them a little more time of not to have to worry about thinking about mortality.  That lesson comes all too fast for all of us anyway.  The mouse went to be with it's family is how I explained why it suddenly disappeared from the top of the refrigerator.  A completely acceptable thing for Luke.  He only asked once and it was fine - out of sight out of mind.   Noah looked a few times for it, and then that was fine too.  And as fast as the mouse came into the picture, he left. 

Because of the circumstances I didn't have time for a proper burial - yes I did actually think about it.  I think I felt sorry for myself for most of the day in fact - that looming sense of failure - and because I really put in the effort and thought I'd be able to save it and release it.  Although in reality I worried about that too wondering how it would find shelter in time before it snowed... and perhaps I wouldn't have been able to let go of something so easily that I essentially raised... till let's say spring of next year... who am I really kidding?

I kept peeking in on it kind of hoping that death was not a final diagnosis, wishing for a resurrection - a chance for me to try again - a chance for me to do better.   Issues that I know still haunt me from Noah's birth - a redo - if only I can go back in time I tell myself - it would all be so different.  I could have saved Noah from this fate and birthed at a different hospital, insisted he not go over his due date, insist on an instant c-section not just a 13 hour, natural delivery delay, without a notarized birth plan for hospital staff to hide behind as an excuse for not meeting the standard of care - and the mouse perhaps I could have too also influenced the final outcome. 

But that's the recipe to how we carry guilt.  We carry guilt because we convince ourselves we are somehow to blame for an adverse outcome.  Even when we had nothing at all to do with the end result and it was ultimately out of our hands.

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

Monday, October 3, 2016

Speechless: More Than a One Hit Wonder

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Many of those in the special needs community (although were already rooting for Speechless) were waiting to see if the show would have ongoing and amazing content after the much anticipated first episode aired.  I must say I was as pleased with the second episode as I was the first.  Maybe even more so, as there are a variety of subjects, situations and discussions that are centered around a special needs family dynamic. 

In episode two, the viewer got a preview into what I like to call the "special needs mom push back," caregiver topics such as toileting assistance, financial strain homestead issues, and the independent thinking and personality that many assume who are non-verbal don't have, and the hardest one - trying to let go - "when he is your entire world."

The classic mom push back was hilarious to watch.  While most of us are not privileged enough to have the opportunity to lecture the school principal on how the "push back" actually works, the scene provide a sense of authenticity to the real show down that really exists and occurs quite frequently when you are advocating for your child with a disability.  The dad, whom viewers may think is along for the ride, with his head flipping backwards and arms crossed, simply signals that he knows that his wife's inner bitch has been unleashed and he just stands back to watch the show  - a show he fully supports. 

Two parts although still light-hearted in their presentation still had a way of pulling on those familiar heartstrings.  When JJ's new aide, Kenneth, is about to embark on a solo journey for the day with him, and his mother is having a hard time trusting and letting go.  (And not without undue concern as the aide temporarily drives off without him) - and knowing that you at some point have to trust another stranger and human being with the most precious and protected person - that sweet child that has indeed become your entire world.  Certainly as Noah gets older, my mind has not gone there a time or two.  For the most part I don't go there often because those feelings of ever being able to trust someone else to care for Noah with the same safety, tenderness and care that I do - feels unlikely and impossible at the moment.  But, that doesn't mean that I don't remain open for the right person to walk into his life one day who might come close to fitting my long list of caregiver requirements.

An equally touching yet complicated moment was when JJ's mother, Maya, walked in on a conversation between JJ and his aide in the bathroom.  A moment that gave her some hope - not total trust - but a glimmer of hope that perhaps she indeed had made a good decision for her son.  A patient and understanding aide, Kenneth, does a superior job of reassuring JJ that he can assist with his toileting needs and would be there to help him. Fair to say that pretty much is on every special needs parent's wishlist - someone that will be there for their child who genuinely wants to assist them and give them every possible feeling of dignity that they can with what is required in 24/7 daily living needs, personal hygiene and care.

Perhaps one of the most comical parts were when the DiMeo family approached their neighbors with a realistic picture of how they'd be voted least likely to keep up with their property.   While that part of the episode may have come across snooty, careless, or unconcerned, to the average viewer - to a special needs family it's representative of the financial constraints that really limit a family to have the resources to keep up with home repairs, remodels, and time constraints like household tasks like mowing the lawn, gardening, and snow shoveling.  And in the end the perception is from neighbors is that we are stupid, lazy, or in the words of JJ's little sister, Dylan, "idiots."

Speechless hit another second episode home run - one in which has scored the show an entire season pick-up by the network.  And special needs families everywhere are celebrating.   What disability topic would you most like Speechless to cover this season?


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

Tuesday, September 27, 2016

Burnt Pancakes Becomes the Theme

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Our alpha dog has decided that in course of the last nine weeks that she's found the need to be distraught in the night.  Thankfully, this hasn't manifested into whines, cries or barks, but she exhibits anxiety panic-like attacks that can last for hours on end with panting and excessive banging, scratching at pens or crates, or if we let her free to roam she pretends she is a race car without a finish line.  With what little Noah does sleep, she disrupts any potential quality of sleep he gets and makes him stir.  The vet says this is common in older dogs that start to lose their vision - super, I think to myself as I calmly rush to the nearest holistic vet store and buy anti-anxiety drops and CBD treats in an effort to naturally cool her jets.  And overtired me thought a quick shower before a telephone conference and Noah's speech therapy sounded grand after even less sleep that Noah has accustomed me to. And by quick, like seven minutes tops. 

Sad, that special needs parents like myself relish even a quick shower as a treat in our day.  Things were going great, I managed not to get any soap in my eyes, and had a chance to squeegee the water off the glass doors even - until Luke rounded the corner and said slyly... "see what I did."  And I'm thinking oh yeah, like you lined up all your match box cars in a row, or colored a Dory picture in your room... "I turned on the oven" he whispers.  "I did it."

I sprint to kitchen like a cheetah, dripping with nothing more than a towel and a t-shirt, a sense of relief overcomes me when I see nothing at all on the stove's surface, until I look up and realize the smoke plume from the microwave above it.  The microwave still is counting down with over fifteen minutes left making me wonder how long this child actually set it for.  I yank it open fearful of what he decided to nuke, and find six silver dollar pancakes on a severely melted green plastic plate.  The stench quickly takes over the entire house and the smoke so incredible it's like a fog storm rolled through your living room.

All the mischievous and somewhat dangerous ideas that Noah was never able to accomplish.  Things that never crossed my mind all the naughty things that a child of age five would think to do in the seven peaceful moments his sleep deprived mother used for a shower.  All I can think of is the potential plastic fume toxins that could reach Noah - medically fragile Noah who already has enough problems to contend with.  I block Noah's door like that evil monster in the movie Poltergeist so no one can enter his bedroom until the smoke cleared and the windows relieved some of the burnt evidence, all while thinking this is the perfect theme to how my weeks have been going.  Burnt pancakes is really the perfect analogy.

I think I somehow thought the older Noah got the easier it would become for me to navigate his needs better.  Truth be told it feels much harder now. When he was a baby I could put a band-aid on the equipment needs with rigged baby strollers and toys, now that he's almost eight everything is customized, and complicated and costs thousands of dollars. And everything he needs to make his life better is met with such incredible resistance from the very programs promised and designed to help children with disabilities.  And I get up each day and fight - that is literally what I'm doing.  I'm fighting with Medicaid with waivers, with vendors with DME's - I feel like I'm fighting with the world to hear me and to help Noah.

And I have all these continual challenges that I can seem to find ways around.  Medicaid approved a new WinSlate AAC device for Noah, but since his last AAC device nearly three years ago, Medicaid has put in a mounting cap of $468.68, on the average AAC mounts cost between $1,400-$1,700 and Noah needs more than one.  Not all are universal and we are struggling wit the fact he currently has no table top mount, or manual wheelchair mount.  The only one that was approved was for his power wheelchair, and that is being repaired and altered and he can't even use it full time.  The same problem complication is really true with Noah's orthotic shoes - he needs Piedro shoes where the AFO is really built into the shoe, but because Medicaid's reimbursement rate is so low, vendors have decided they will not cover them, nor allow me to pay the difference because legally they cannot bill a family for an otherwise Medicaid covered benefit - even if Medicaid will not fund the entire purchase price.  So that leaves Noah with an appointment to be measured for shoes Thursday - but us having to fund customized shoes for him that will be around $300.  The hemorrhaging of money isn't a good time - at some point it really comes down to it simply not being possible.  So when a doctor asks me why Noah's middle toes arch or his foot bones are distorting I can kindly reply because Medicaid won't help him and we don't have the money for the hundreds it will cost out of pocket for a product that he can wear comfortably and that is not a sensory challenge for him.

The State denied Noah's VocalID - a customized voice that would be a blend of his little brother's voice and his vocalizations for Noah's AAC device, I'm appealing, but I've lost track now of how many appeals I'm on - I think it's seven, but I'm so tired to think that it could be higher.  And while my batting average for Noah is really good, the State always comes in after a favorable ruling and files an Exception to Initial Decision and wipes out the appellate process. Leaving us back to square one after all of my fighting efforts.  While I think I have a good chance at over turning the VocalID denial, I expect the State will still block me.  I had asked Noah's waiver for PPod accessories for his PPod.  Earlier this year the State simply anticipated I might ask for them and entered a denial without me even submitting a request with required paperwork, citing SSA 6505, which prohibits the purchase of any adapted equipment where payment is sent directly out of the country for the item.  The PPod at that time existed solely in the UK.  Since that time Drive Medical who bought SOS in January of 2015, decided to distribute and sell the product in the US.  A move that happened in July of this year.  However they are primarily allowing an online vendor to distribute it, and the costs are a bit more challenging ironically than they would have been with a direct UK purchase.  Knowing that the State could no longer hide behind SSA 6505, I put in a formal written request for it.  I was home free for a half an hour when I got an email saying it had been approved and was being sent to billing for Noah, until I received another email saying they had made a mistake and were sending it on to the State panel for further determination and review.   I temporarily celebrated during that half hour, but I kind of already knew the other shoe was about to drop.  As really sad as it is, I've come to expect the bad news, and rarely know what to do with myself these days if anything is easy or uncomplicated.

And in my spare time, I do silly things like take on the idea that I can change federally funded programs into recognizing that families like ours need more help with TANF, SNAP, and family Medicaid, and that new IRS guidelines should be an influencing factor in policy making, or that I somehow can get Medicaid Caps eliminated for certain funding categories or find better justice for the disabled community and all these families who feel so defeated and don't have the fight drive that I have. I don't know what it is about my personality that just can't walk away from it all - I mean clearly I have my hands full just with Noah's needs that never come easy, for me to think I can take on the world almost feels like insanity. I think it just comes from deep down where I just don't want another parent to walk in my footsteps and have to fight the same battles I have had to or have shed the same tears in the name of helping their child.  I want to spare everyone from this bottomless feeling where hope gets lost.  I don't know that I can save anyone though from this pain, I want to, it's not easy to wake up every morning and know for every email you read that it's a problem you have to sort for your child, or to have the weight of the world on your shoulders to find a way to financially fund something he needs that isn't as simple as going to Target for.

So burnt pancakes it is...


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

Friday, September 9, 2016

ABC's New Sitcom Speechless Nails It!

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I won't try to minimize my growing excitement for the new ABC Sitcom Comedy, Speechless which makes its television debut September 21st.  It is incredibly rare when a television network takes on programming that doesn't just simply throw in a token disability in the plot but showcases the disability and makes the person the primary focus in the show.  The trailers have been a fantastic tease offering a realistic but hilarious glimpse into situations that are tremendously relatable if you have a child with special needs, - especially one who is both in a wheelchair and non-verbal like Noah.  ABC has done a great job with building anticipation and a developing a fan base that I think will not only appeal to special needs families but also to typical families who may not otherwise be familiar with many of the realistic challenges that we face daily.  Some situations so absurd one might think we are exaggerating for comedic effect - but oh how true it all is. 

I had the opportunity to view the first episode today, via an Amazon invitation.  Wasn't about to pass that up on a Friday.  Nope this special needs mom spent nearly 22 minutes (commercial free) laughing and relating to a day in a life that resembles my own.  And then I spent another nearly twenty-two minutes watching it again with Noah, his grandmother and Luke.  They all were glued to it just as much as I was - Noah uniquely so.  He has never in his life seen a family dynamic that resembles our own.  He laughed and was engrossed in the show.

*** Spoil Alert ***
Speechless opens as the family moves in order to provide more resources for their disabled oldest son, JJ DiMeo, played by Micah Fowler, who also in real life has cerebral palsy.  The house is less than ideal.  It's doors are falling off the frames, the deck is missing, they have a cell tower camouflaged as a tree in the backyard, and their home backs up to a very busy street and train tracks.  Yet in the name in the spirit of giving their special needs child all the opportunities that he deserves the entire family bites the bullet and pulls together to do the best they can with these sets of homestead circumstances.

Minnie Driver plays Maya DiMeo.  She is extraordinary in her role.  It is as if she literally shadowed a special needs mother for months on end, or had her own special needs child herself.  Her firm and unique understanding of her character is quite amazing.  She accurately depicts the fierce advocate drive that you find in most special needs mothers, mixed with a dash of humor, and sense of authenticity that makes her feel as if she is you.  Minnie was an excellent choice, and I'm going to look forward to watching her speed from place to place during each episode rooting her on as she continues to avoid countless and likely well deserving speeding tickets all in the name of awareness, disability rights, and unconditional love for her entire family.

Minnie's character without so much batting an eye cares very little about her reputation of being "that aggressive and difficult mom," but instead embraces it and wears the title proudly on her sleeve.  I enjoyed how she depicted our drive for change out there on the lawn of the school with her paper petition scouting for signatures all the while showing no remorse for stepping on the schools freshly planted flowers after realizing that her son's only way of entering the school building was by way of a trash ramp that the school district found was "acceptable alternative access."  Minnie's "schooling" of the staff became a comical scene that not only does a great job of demonstrating many of the illogical and unfair challenges we face as parents of children with disabilities, but does a great job of giving all viewers regardless of their family dynamic something to really think about and digest.  And that is the biggest thing the disability community could ever hope for with a sitcom like this.  It is a teaching tool for people.  I hope that it gives all viewers a half hour of entertainment mixed with food for thought so the next time they walk into someone like us they know what walking in our shoes really is all about.

John Ross Bowie, who plays Jimmy DiMeo - JJ's Dad does a great job of being Minnie's parental sidekick.  You can tell his character is quite familiar with what will push his wife's buttons like the use of the word "cripple."  You can see him roll his eyes and his body language says you just dug your own grave because my wife is about to have a field day with you.   A strong family man who stands proudly behind his wife's efforts and knows that no matter her choices that at the heart of it all she's doing the best she can.

In the first episode we get to see the classic nut case therapist.  We've all been there.  I've been there way too many times I'm not even sure how I have survived some of them or Noah either... It is good to see that the show is incorporating all real elements to things that we face daily - including a batty, overexcited therapist that would love nothing more than to be fired because she just isn't in to her job - your kid - or your family. 

The show also pokes fun at the classic "you are an inspiration," and "pretending to be inclusive" themes.  On JJ's first day of school the family is greeted by the school principal who thinks that comparing the school's change of mascot is the equivalent to representing inclusion.  The mascot has been changed from a Viking with its connotations of male aggression to a sea slug which has both male and female genitalia.  The awkwardness in Minnie's expression and her quick change of topic classic of how a special needs parent would react to the strange insinuation that inclusion was in any way related to a sea slug that possessed both genders.

The first episode also explores secondary challenges to special needs parenting.  I always say when you have a child with a disability the entire family has a disability and it will undoubtedly effect each family member differently.  Sibling feelings and emotions are explored, bonds are shown to be powerful within the family unit, and an overall showing of support makes the family strong. 

So how real is Speechless in representing the special needs community?  I'd say it nailed it - at least for me.
  • The DiMeo's move because they are trying to offer their child with special needs better resources and opportunities - we moved to for the same reasons.
  • They move into maybe a less than ideal house - needs work, off a busy street and has a camoflaughed cell tower - well isn't that a coincidence - we bought a house that needed a little bit of work, we live off a busy street and my City Council gifted us with a cell tower camoflaughed as a church bell tower just a short few weeks ago (note the sarcasm in my cell tower joy) and I'm not at all as excited about how many bars may now be on my cell phone like Mr. DiMeo is.
  • The Dimeyo's have a marriage dynamic similar to ours - I'm the mommy pit bull the daddy backs up the mommy at all times and can see the volcano about to erupt when you use words like cripple or retard... or deny our child basic rights to access.  We also bounce things off each other and provide a united front because we know our child's quality of life is dependent upon it.
  • We have a sibling dynamic which sometimes is challenging when you must devote so much time and energy to the child that needs you the most that your other child(ren) equally deserving of extra attention can feel short changed.
  • While I do certainly have a need for speed I've only been pulled over once (and ticketed) coming home from Noah's hippotherapy.  *Note to self * The next time a police offer asks if you if you can financially afford the ticket he's about to give you - say NO, not yes!"  * In all honesty I'm usually aware of the speed limit - but have bumped up my clock in my car to be 15 minutes ahead to keep me "on time."
  • I've been known to start a petition or two, or three, or four.  Or go on public television... or give interviews to papers... or well whatever needs to be done in the name of advocating for my child.  Although I don't think I've crushed any flowers in the process, but I likely wouldn't feel guilty about it either if I had.  (Way to go Minnie!)
  • I'm not perfect and I'm still balancing parenting two children with very two differently physical abilities and needs.  I don't always get it right, but I'm trying hard and so is JJ's mother on Speechless.
  • Noah is cognitively aware and just because he uses an AAC device for his communication does not mean he doesn't have a voice.  Noah recently got a new speech therapist Ben, who we both really like.  Ben is really cool - even when I couldn't understand one day what Luke was saying and I asked Ben if he happened to make sense of what Noah's little brother was trying to say.  And he sweetly replied with a smile on his face.  "He is saying God Damn."  Rather than pointing fingers at the parent Ben seemed understanding - I've since found the source of that phrase in a children's show Luke has on DVD titled Aussie and Ted's Great Australian Adventure.   But Ben had little hesitation in interpreting for me, so if Noah decided he wanted to say the word "shit," I doubt Ben would purposefully sensor him as JJ's therapist chose to on the first day of class.
  • Just because Noah is in a wheelchair doesn't' mean you have to treat him like he's a superstar.  He's not a celebrity and like JJ you don't have to vote for him as president.  (Although JJ does certainly get creative with that suggestion in order to rescue his little brother from a problematic situation on an amusement ride).
  • We go lots of places that don't have accessible ramps or rides or anything that is disability friendly... and like Minnie's character I'm always quick to point out the shortcomings of any establishment that fails to meet those needs.
The show will be a big win with special needs families and something like this is so overdue in television programming.  I hope to see this sitcom have a long run on the network.  Don't forget to tune in September 21st, and for those of you who can't wait.. you can watch it at this link. You won't be disappointed.


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

Thursday, September 8, 2016

Miracles from Heaven (Can Look Differently)

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I gave great pause to the Netflix movie that recently arrived in my mailbox; Miracles from Heaven.  It's not so much I was intentionally avoiding it, as finding the right moment in time to put myself in the proper frame of mind to watch it.  I was already was privy to reactions from other parents in the special needs community to it, perhaps I wasn't sure how I would feel myself after watching in it comparison to their feelings.  Without question if you have a child that is facing a life-threatening illness or condition, or a severe life long disability that also poses it's own set of life-threatening risks naturally as parents we pray and hope for a complete cure.  Not a temporary band-aid, not a little bit improved - but that total and complete healing miracle.
Book by Marji Jackson
The difficulty really becomes when you start comparing your miracles to the miracles of others and then you start asking yourself really detrimental questions:  "Why was their child spared and healed and not mine?"  "Why did that treatment work for another child but not mine?"  "Why did God allow that baby to go without oxygen 45 minutes and mine was only without 13, and he's profoundly disabled and the baby that 45 minutes without life and oxygen is living a normal life?"  (That last one really a true thing for me).  Early on a really wonderful lady that I've lost touch with over the years reached out to me.  A news reporter for channel 9 had given her our story when Noah was just days old in the NICU and she contacted me via email.  Her daughter, twenty years older than Noah, had survived after birth with no heart beat of breathing for the first 45 minutes of life - a miracle indeed that not only did her daughter survive, but went on to lead a normal life, talks - walks... holds down a job - even got married. Sure she had some stumbling blocks and had a portion of her brain removed to control seizure activity, but otherwise is a living miracle.  I should emphasize I expected the same would hold true for Noah.  He was born a fighter his mom equally a fighter in her own right, the odds were in his favor.  Sure they were.  How could they not be?  Months went by and even when milestones weren't being met I still convinced myself things would happen at 10 months, 18 months, 24 months, even five years later.  Because after all the possibility of a miracle can happen everyday.  In fact, sometimes I'll wake up in the morning after an incredible dream where Noah is typical in every way, talking to me and running and playing.  And for a moment I forget it's just a dream because it feels so real.

The thing is though God gave me my miracle in the days and weeks after Noah's birth.  Against all odds, with the belief that Noah didn't even have a functioning brain stem as a result of his severe anoxic brain injury, he survived when we removed him from life support.  I prayed so hard that God would spare him, and I even told God I'd take him any way that I could have him.  In my heart I accepted that I'd be okay with anything that came along with Noah if I could just please have his life - no matter how that looked.  My simple prayer was answered. Not all prayers are and I'm really blessed, so blessed that my cries for my son were heard.

Through the years I've come to accept that miracles are going to look differently for everyone.  People don't really acknowledge a miracle unless it represents full healing or a cure.  In fact many times in the past people have called me out on even titling Noah's blog Noah's Miracle since he is severely disabled and never found healing that left him fully restored and a typical child.  It is hard for others to understand and accept that Noah's Miracle came from the fact that he survived -when no one believed he had a chance.  He's still here. 

A mom still battling her own grief, challenged what about the child she lost?  Why are some granted a miracle of surviving just like Noah?  When she did not pray any less than I did, didn't beg God any less than I did.  There is no secret recipe to receiving a Miracle.  I wish there was, can you imagine how much pain it would spare all of us? Her child no less precious, no less deserving of a beautiful and full life, and cancer won.  Whether we are gifted with three minutes of life, ten years, or fifty decades, I want to believe each individual story and impact we have while we are here means something, and perhaps sometimes we've accomplished what God intended us to do with the amount of time we're given and maybe that's the real miracle.

So, I was able to watch Miracles From Heaven, without a heavy heart.  Without resentment that a family received full healing when my child did not.  I am able to find peace with the fact that miracles come in different forms.  And my miracle and your miracle aren't always going to look identical to each other.  And each day I surround myself gifts Noah has been given that serve as gentle reminders Noah's Miracle; a book re-purposed and folded to say Miracles made by a sweet friend Marji Jackson, Noah's Miracle badge that he received from a loving heart in Australia and her business called Heavenly Trimmings.  God never fails to send me reminders so that I never ever forget the incredible miracle that I have been given.
Noah's Heavenly Trimmings Miracle Badge

Many blessings and love,

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

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.