December Pain

Luke, as most growing children do have an innocent curiosity about them.  He thinks absolutely nothing about blurting out "tell me about Noah's first Christmas" at the dinner table - nor should he.  A question that shouldn't be a big deal for most, feels like being hit with a giant unexpected boulder out of nowhere.  Those questions - those unexpected questions that you just either aren't prepared to answer or don't want to answer, or even a mixture of both.  Chris took the lead, much to my relief.  I didn't know where to start.  The pain inside me says let's skip to the easy parts, the hard parts need not be mentioned for the sake of all involved.

"We celebrated Christmas late," Chris explained.  He went on to address Luke's puzzled expression, with a follow up that Noah was still in the hospital at Christmastime, so we celebrated in January when we got to bring him home.  Luke seemed confused on how one could celebrate Christmas in January when it should have been over.

In my mind I'm pushing down memories, terrible ones as the two of them converse.  The kind like where it all flashes before you again, the priest, the rosary, that call saying he's not going to make it through the night, the demands for a blood transfusion to try to keep his organs alive because every part of him had been so deprived of oxygen - the parade on television, being alone at the hospital without anyone, wondering if my husband and son were fighting hard at another hospital, wondering if I would even make it through any of it.  None of that could ever be explained to a sweet eight year old child at the dinner table.

I appreciated Chris skipping all of that to just explain we delayed Christmas for Noah.  Chris no more wanted to dive into the complexities of pain than I did.  Some traits are probably specific to how parents like us process continual and ongoing pain - because that's really what it is, ongoing.  And some of it could be that we've learned this way of suppressing past pain so we can get through each new day.

It bothered Chris in the same way it did me.  I could tell.  He made an off the cuff comment not even an hour later saying at least Christmas would be over in one more week. Luke asking him to build a gingerbread house and Chris saying lightly and softly with a retreating voice, "not tonight." I know... perhaps in the same way Chris knows the month of December is just hard.

It's really almost hard to even put into words sometimes, that tug of war with being so incredibly joyful about Noah and his life, and the fact that he's turning eleven in three days.  A milestone in which neither of us thought we'd ever see.  Eleven.   How beyond blessed we are for eleven amazing years with this beautiful little boy. But it's that tiny tug that creeps up when you least expect it, the tug that says it could have been different, that tug of guilt that plays "what if" with my soul.  The regret that I didn't know my own baby was in distress, that I couldn't save him from this forever fate.

December pain exists for so many families, Christmas for us is very complicated.  We are in a season that is naturally supposed to be sprinkled with joy and magic, and we're pushing through what sometimes feels like a perpetual emotional blizzard.  We are neither between Grinch or Fa La La La - but in this sense of feeling like you can't catch your breath.  Christmas cards go unopened, bills stack on the counter, gifts that need to be wrapped feel like they are screaming your name and you just want to see it through.

December can feel like onion layers at times, SSI battles, Medicaid appeals, durable medical equipment appointments, credit card disputes, therapies, private battles, and you're navigating circumstantial things with this pain.  And then there's the parts that are still overwhelming but in a good way, the boys having breakfast with Santa, seeing the excitement that exists in both of their eyes, North Metro Fire Department coming to celebrate Noah's eleventh birthday --

January is right around the corner I tell myself.  Hold on until January and some of this pain might get packed away just like the Christmas decorations for another year.  Stored and packed away in a little box that is in my heart.

Love,

 







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

Dear Special Needs Parent, I Sit Beside You At Christmastime -

I hear your stories.  You see they often echo some versions of mine.  I sit beside you in the pain, the loss, the grief, the sadness and that longing that things were different.

It's a side of the holiday season no one discusses.  In a time where we are supposed to feel magic, joy and happiness we're feeling regret, blame, misplacement, worry and fear and broken-heartedness.

I sit beside you as you tell your story about how you tried to pick out the perfect Christmas tree and how forlorn and beside yourself you were because your child had no interest in it.  How you sat with your tears crawling from the sides of your eyes trying to disguise how you wish he was not non-verbal and unable to help decorate the family tree.  How you had to watch your typical child place the star on top of the tree, knowing your other child will never be capable of that.

I sit beside you as you mourn the loss of your child that passed away four months ago.  I see you post daily in support groups about your continuous heartbreak and profound grief.  I sit beside you in the moment of the piercing sound of Christmas music in stores, as you glance at a bedroom that you can't bring yourself to change or touch, to not want to decorate or bake cookies because it feels like a betrayal to the child you so desperately miss.

I sit beside you when you're at a toy store feeling so lost because you know that nothing in that store is appropriate for a child that cannot sit, walk, talk, crawl or self-feed, and you feel like all eyes are on you with a child in a wheelchair knowing that people feel sorry for you and are secretly relieved they aren't you.  I sit beside you as you quietly shrink inside and hold back the tears that inevitably fall upon your steering wheel when you get to your car.

I sit beside you in the awkward silence that your extended family displays, as a family in-law criticizes you for the lack of progress and recovery your child has made this year.  You cringe and bite your tongue and hold fighting back because you're so wounded that family could be so cruel and imply you aren't doing enough - not trying hard enough to find recovery for your child.  Feelings of blame and fault fester as you pour egg nog into glasses with a smile trying to pretend you're okay.

I sit with you as you ache for your child to have the physical abilities to open and unwrap Christmas presents under the tree.  How you patiently hold her in your lap assisting her gently and making sure that she knows it's okay that she can't do these things because you still love her with all your heart and then some.  You feel so protective and proud that she's still here with you that her not being able to open a present feels obsolete in the bigger picture of the blessing.

I sit with you as you pour your heart out and vent your financial frustrations that you can't keep up with the demands of out of pocket therapy, medical, equipment costs stacked up against needing to provide Christmas gifts and food for your family.  I sit with you, as you swallow your pride super hard as you seek out assistance from food banks and non-profit organizations assisting families like yours at the holiday season.

I sit with you as you crumble inside because you over hear another mom bragging about how she made brownies for her child's school Christmas party, while you are getting your double shot latte.  You feel inadequate and helpless and are doing all you can to stay on your feet after an all-nighter with your child who has special needs and you think to yourself will any of this get any better?  I sit with you as you camouflage how tired you are, and how you don't want anyone to see you are less than brave, less than courageous facade.  I sit with you, as you just want someone to hold you in that uncertain and scary place of never knowing if you will have a tomorrow with your child.

I sit with you as the timing of another diagnosis hits you in the middle of Christmas decorating and feels like a natural disaster has taken hold of your soul.  I sit with you as you throw an entire box of glass ornaments against the wall and into the fireplace with hysterical screams of pain only angels can hear.  I sit with you knowing that things may never be okay or normal again.

I sit with you as you hold that tiny hand of a precious child you brought into this world as they lay helplessly in a hospital bed recovering from another necessary life-saving surgery.  I sit with you as you beg for prayers in all directions and ask God to spare taking your heart and will to live away.  You're stoic in the moment, and unwavering with hope and faith, but deep down your only Christmas wish is just to be home safe and sound to be able to celebrate one more Christmas together.

I sit beside you as you have to decline holiday party invitations knowing that your child's sensory processing disorder could never handle it and that you don't have any respite for a date night with your spouse.  I sit beside you as you feel lonely, isolated and feel like life is standing still for you and revolving for everyone else around you.

I sit beside you because no one else will.  I sit with you in the silence and everything in between.  I sit with you on the stormy nights of uncertainty.  I sit with you because we're all in this together in a place we never thought we'd be.  I sit with you because Christmastime is hard.  I sit with you because it's okay to say that out-loud.  I sit with you in comfort, love and light.

Love,



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

A Family of Miracles - Brystal Sonoma's Story

Today marks the one year anniversary of the brutal and vicious attack of one of our beloved Cairn Terriers, Brystal Sonoma.   She was in the comfort and safety of her backyard when a coyote jumped the fence.  Brystal is such a soft soul.  Both of our cairns have qualities specific to my personality (as most dogs do).  Hollie Edelbrock is brave, protective, loud, loyal and loving.  Brystal is tender, wants to make friends with everyone and anything, she wants to lick your wounds, and is a natural healer and most of all trusting.  That trust allowed her to fall pray to a Coyote.  Hollie's instinct was to run for safety, Brystal's was to run towards unknowing danger in the form of what she thought was a friend.

Brystal's jaw was ripped at the hinge and broken in three places, multiple puncture wounds throughout her small and fragile neck.  Her jaw bleeding profusely hanging from her head, but still had the wherewithal to run despite her severe injuries into the house and under a bed seeking safety to save her own life.  I called the nearest emergency veterinary clinics, at 7pm at night they all denied me care due to being too busy.  I told them I was coming anyways and that I would not let them turn me away.

Brystal was clearly in so much pain, shaking, in shock and suffering from tremendous trauma.  But the look in her sweet eyes said nothing but please help me and that I'm sorry.   She was sorry that she was in this position, to no fault of her own.   She paced back and forth, breathing heavily through the pain.  It felt like it took forever to get her the morphine she needed to ease her pain until we could truly assess the extent of her injuries.  The emergency clinic worked fast, xrays were done on the spot - the prognosis a bit grim.  She was stabilized overnight, but her injuries were so extensive that no local vet could assist.  The vet didn't give us many options or hope, it was rather the secretary who whispered take her to VRCC - Veterinary Referral & Critical Care.  And told us they would be able to help.  The drive was super far, and my husband and I left Noah and his brother with respite, and made the long hour drive there.

They assessed her quickly and made the determination that they thought that they could fix her - that she had the small potential to survive.  But it would come at a great cost.  It was already $2,000 to get it through the night at the emergency clinic, we were facing another $4,000 for life-saving surgery of repairing her jaw, and then another $4,000 after that for reconstructive internal mouth surgery, and bone grafting.  No one wants to hear that, especially when you are a special needs family who is already financially struggling with out of pocket medical, therapy and equipment expenses not covered by insurance.

But we believe you can't put a price on a life - not even a dog's.  Every single life should be fought for - and God willing you figure it out as you go. We consented to the surgery and the costs and less than two hours later Brystal was in reconstructive surgery.  We sat, we waited.  We stayed until she was out of surgery and it was a success.  They drilled through her jaw with an exterior x-fix, and braced the broken jaw and placed it back in place.  She looked terrible, and the device looked heavy and uncomfortable.  But, we were far from out of the woods.  The chance for infection high, we'd have to figure out how to get her to eat - and stabilize her for the next four months until she could heal and have additional surgery to remove the x-fix and then reconstruct the inside of her mouth with bone grafting and tooth removal.

Brystal is a non-complainer.  And her tolerance for pain much higher than our other cairn terrier.  Her will to live also significantly stronger than what I think our other cairn could withstand.   If any dog had a chance it was Brystal.  The world's smallest fighter.

I've seen that same fight drive in Noah.  That will to live.  That I will fight at any cost to be here - even if it's not perfect.

I was no stranger to that fight drive, and so I made the decision to fight alongside and do what I could.

It was a very hard first few months.  Brystal wouldn't eat, I was forcing syringes full of water to keep her hydrated, and ultimately had to resort to pureeing all her food and syringe feeding her that too.  Slowly she'd eat strange things like tiny amounts of canned tuna, or sliced deli turkey.  We tried every soft dog food brand on the market, I must have spent hundreds of dollars trying and trying some more.  I tried to put the costs out of my mind and just do what had to be done.  I know we were sinking ourselves financially even more by making the decision to save her life.  But she was family.  No one gets left behind.  Not even the family dog.

She'd have good days and bad days.  The bad days were super hard as I'm caring for Noah and then turn my back to see blood dripping all over the floor feverishly from her mouth.  Multiple emergency trips back one hour each way - determined that the x-fix had gone through several teeth and was now protruding into her tongue so every time she moved her tongue it would be punctured and bleed.  They could do nothing to prevent that or it would harm the stability of the x-fix.  So, I'd be mopping up trails of blood for months on end in addition to carrying for Noah's needs too.

I never once thought of any of it as an inconvenience or burden.  Not Noah - not Brystal.  Like a well-oiled caregiving machine I did what had to be done.  Three times a day forcing medication, three times a day cleaning her x-fix that was crusty from blood and fluids that leaked out of open drill sites on the exterior of her mouth, faithfully applying saline and antibiotic ointment.  It felt touch and go, and I did a lot of praying that we'd get through it.

And in April of 2019, Brystal had finally healed enough to have the x-fix removed, but we weren't out of the woods yet.  Two more surgeries were in her future.  She'd have to be sedated for the removal, and then was facing internal mouth reconstruction two weeks later.  She came through the removal well, we were still guarded. And two weeks later seen another specialist to reconstruct her mouth. She lost almost all her teeth, many from being damaged in the attack, many from being damaged as they drilled into her jaw with the x-fix to save her life.  But she came through both, and with amazingly high spirits.

This dog is really a true testament to resilience and how much a life can withstand if they really want to fight to be here.

By the end of it our bills collectively were over $7,000.  Most of it was put on credit cards, but it ultimately resulted in us having to refinance our home over the summer.  We have no regrets.

Today, Brystal is thriving.  She acts much like the energetic little bouncy puppy that runs and skips along like a baby bunny would.  She's remains a delight to have, her spirit a reminder that you can get through the worst that life can give you and still find a happy ending.   Brystal will celebrate her 14th Birthday in March 2020.  And her age was never a factor for us saving her life.

We know that not everyone could understand or even agree with the decisions that we made to save her life, and that's okay with us.  Having a child like Noah, and having to fight for his life I think left a mark on us.  And so when someone tells you there is hope - you fight for that hope.  God will see you through, it may be incredibly hard and you may not know how you're going to make it happen or get through it all.  But, you will.  You just have to have faith.

So this Thanksgiving we are incredibly blessed to still have our little Brystal with us.  She was granted more time to stay, and we are so grateful that we more days with her.  Believe in Miracles - miracles may not come easy - but they do happen.

Love,

 


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

Looking Back

Maybe it's part of the human condition that purposely tries to block out all the bad.  If we dwell too long in the hardship then we lack the ability to properly move forward.  But occasionally, as life often does - it will remind you time to time of the past.  Sometimes you have a profound appreciation for how far you've come, the obstacles you've conquered, pride in perseverance - and other times sadness that you ever had to be in that position in the first place.

I've been on this special needs parenting journey now for more than a decade.  The past and present both bumpy.  In the early days I didn't really have any clue what I was doing.  I was lost.  Completely lost without a roadmap on how to navigate anything.  Therapies, appointments, bad news, how to process even a multitude of emotions that hit you simultaneously - the financial strain, the sleepless nights, the endless worry - and the profound adaptation and acceptance that your life will never have any sense of the normalcy it once did.

I got an email today inviting Noah to receive a letter from Santa through a non-profit organization we used when Noah was days old called There With Care.  They are an organization that coordinates various types of help.  Noah was sent home on hospice of sorts - the Butterfly Program.  A team of people assigned to you that you call to assist you with arrangements when your child passes away, and alongside that came a There with Care referral.  I couldn't return to work, ultimately resulting in my resignation of my decade long legal career, I lost my transcript business because I couldn't keep up with the demands of running it while caring for a neurologically distraught baby who's disabilities became more apparent with each growing day, and voluntarily gave up assisting with a nursing call center in the middle of the night. I found myself instantly with large bills that Medicaid didn't back date for flight for life, all the while trying to figure out how to feverishly pay our mortgage and other bill obligations on one income.  I wasn't present in the moment.   My heart was blown apart, my world felt uncertain, and I kept focused on just simply doing everything within my means to keep this precious little boy here on earth with me. 

I had forgotten about There With Care - although they serviced us for the first year, they brought us groceries, they provided meals, they gave Noah baby gifts, and baby supplies that we needed. It's odd how we don't really forget, but that we put things out of our mind - to move forward with the next chapter or the next challenge. Had I of not received that email invite to have Noah receive a letter from them, I'm not sure that they would have crossed my mind.  Not even in the capacity to recommend that resource to another family.  Perhaps we block out such things for self-preservation or because we are simply so overwhelmed that we're trying to get from one point in our lives to the next.

I had filed it within myself long, long ago.  A place perhaps that was dark and irresolute. I'm not sure what I would have done without someone just navigating all of those types of things on our behalf in the early days.  It was like I was present - but not fully present at the same time.  Memories can be interesting like that on the special needs journey.  Where something can just instantly remind you of a moment in time.  And then again sometimes things come full circle, a humble reminder of all the hard places you've been and how blessed you're still standing after all of it.  Looking back is harder for me than looking forward.  And looking forward is still very scary too. 

Never did I ever imagine that the very organization that was our life-line in the beginning would wind up sending my sweet Noah a Christmas letter from Santa ten years later. Blessings never forgotten, and blessings still yet to be received.

 Love,
 

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

Raising Dion: Disability Hit and Misses

I was really excited to watch the new series Raising Dion on Netflix.  Besides personally knowing the little girl who plays a supporting role in the show, I was very pleased that the show cast a character that both has a disability in real life and in the series.  Sammi Haney, plays a little girl named Esperanza, who is a friend of the main character, Dion. 

The premise of the show is a boy that has the sudden onset of super-natural abilities, and the complexities of having those "super powers" as a child learning to navigate them, and how his widowed mother learns to cope with her child now being a very different little boy, than the one that she was familiar with.  The show introduces Sammi's character rather early in the series which I was glad to see. 

However, my disappointment grew with each additional episode.  The story line was pretty predictable and felt like almost like a copy-cat to most super natural television these days. The acting from all the children was strong and their chemistry matched well with each other. Watching Sammi act was much like knowing her in real life.  She's just naturally this charismatic sweet child, and you can't help but fall in love with her.  She's a child that exudes positive energy and happiness.  If it was dark out she'd literally light it up with her personality like a glow stick, so I'm not surprised that she was chosen for this role.

That's part of the reason I'm let down with the series.  They had this huge opportunity to showcase her more, and she became almost hidden in the background, with what felt like a guest appearance here and there.

The character of Esperanza is depicted as a child that sees herself as "invisible." Her peers primarily ignore her, in fact even Dion finds her annoying and through the majority of the series does his best not be associated in any way with her as if she's an embarrassment.  It isn't until she serves Dion in attempting to retrieve his asthma inhaler during a crisis at a birthday party that he even gives the friendship a chance. The show has this precious character in Esperanza and no one really wants to be her friend - not even Dion in the beginning. 

One of the most redeeming scenes was one with Esperanza and Dion happily sharing birthday cake in the back seat of her dad's van.  I also think they did a very poor job with the whole accessible vehicle when it came to how Esperanza was transported around.  There are scenes where an apartment neighbor whom Esperanza's father doesn't even know or is connected with is instructed to drive the family van to get her to the birthday party.  It was unrealistic that any parent would hand over an accessible vehicle to a stranger they didn't know to drive their disabled child anywhere.  Especially without any explanation as to why Esperanza's parents weren't the ones driving.   

The show had a perfect window of opportunity to show out of the gates that children with disabilities have just as strong of friendships as those without, and blew it.  Instead they made Esperanza a cast out of sorts, coming on strong wanting Dion desperately to be her BFF, despite his first rejections of that idea.

The show also took a turn I didn't really love.  Instead of focusing on this great story line with a child with a disability as a supporting character, they decided to focus on racial profiling, which had nothing at all to do with the story line.  It felt forced and out of place.  As if they threw it in there to support a climate of intolerance.  I didn't love it.  And then they took it step further to imply that if you have felt that you were wrong by a racial feelings, that revenge was perfectly acceptable as another character trips the offender in a school hallway as a payback of sorts.  For a Netflix series dealing with a story line involving very young children that all just missed the mark terribly for me.  It really was an out of place "problem" for the series and didn't at all fit whatsoever with the point of the theme.  The last thing we should be promoting is a revenge-like thought pattern to a childhood school injustice.

I kept eagerly awaiting for them to touch upon Sammi's diagnosis, or a better explanation of why she was in a wheelchair.  Sammi Haney has a Osteogenesis imperfecta (OI), also known as brittle bone disease.  Never once was her diagnosis ever discussed much less mentioned and Netflix had the perfect window to spread awareness about the condition and just fell completely flat. 

There is a moment when Dion uses his powers to assist Esperanza with floating and standing as if he wishes to see her walk.  Esperanza gets very hurt by this, and it causes some minor hurt feelings.  Dion reflects on his actions with the help of his mother's feedback and decides he owes her an apology where he explains he realizes she is not broken and doesn't need to be fixed.  And while true, those with disabilities don't need to be seen as broken, in some aspects the condition of OI does cause bones to break more easily. 

I'm really hoping there is a season 2 for Raising Dion because they underutilized the character of Esperanza, and they could have really done better showcasing a character with a disability.  Raising Dion was highly predictable and the use of the music theme used in another Netflix series Stranger Things, was a dead giveaway to the hidden villain.  I wouldn't have stuck with it, had it not been for desperately wanting Sammi Haney's character to be given more screen time.  She was just sprinkled about almost as an after thought or what felt like a move to have one foot in the door with the disability community.

Dear Netflix, you can do a million times better.  Now get that Sammi Haney a leading role or at the very least show us that you can step it up with a season 2.  Don't leave Esperanza behind so much in the background.  And fix the tone you left us with that those with disabilities are friendless, invisible and annoying.  They are anything but. 

While I had hoped it would be a great family series for my children to watch, I can't say that it meets the mark of the theme I wish my children to see.  I don't like the racial profiling theme nor the depiction of revenge.  I don't want my children to think that those with disabilities naturally are friendless or have to beg for a friendship, or to be seen as annoying or an outcast of sorts.  And the super-natural part with a person in a position of trust being the villain made me very uneasy.  You have a very small child essentially engaging via texts on an IPad messaging game with someone he thought he could trust who wants access to kill him.  Netflix in my opinion shouldn't be marketing this as kid friendly, it was much too dark with tones that simply didn't have as much of a positive message as they needed to have for children. 

Here's hoping Netflix steps it up next time.  This one misses the disability mark.

Love,



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

The Nightmare called "The New Target"

I don't think many people relish change.  But in the land of special needs sometimes the word change can send shivers up and down your spine as you anticipate the shrill and shrieking of your child with special need's screams if the unfamiliar gets yanked out from underneath them. 

I kind of feel that same way with Target's new store make-over.  It seriously feels the moment you walk through the doors like someone put you inside a snow globe and shook it up while you're spinning around dizzy.  What the hell? feels like an understatement.  People are raving about how some Target stores now have a Disney section, and how home decor just now sprouted as if Target just became a wannabe furniture outlet in the middle of retail clothing and home goods.  Wasn't it enough to mix grocery and retail?  Really Target.  You are blowing my ever loving mind.

And I liked Target.... the old Target that is.  It ranked right up there with my top fav's alongside Kohl's and continuous trips to Starbucks.  And as much as I dislike the special needs poem Trip to Holland, Target feels a lot like that.  I expected a normal trip.  A familiar trip.  A vacation to potentially a mildly redesigned store, that had more clothing and shoe options and maybe even sprinkled with more organic food inventory. 

What did you do to me Target?  I can't even find the baby food section anymore.  As my child in a wheelchair stares at me like he's also landed on Mars.  Nothing makes sense.  The layout is disjointed, the isles go sideways and horizontally, and before you know it you're staring at kitchen spatulas when all you wanted to do is just find paper towel.  And it's not all that wheelchair friendly.  You can easily get stuck on an isle with a grumpy person staring you down so you know your only alternative is to throw that wheelchair in reverse and attempt to find yet another small isle to see if you can get down.

Why Target?  Just why? 

This totally took your ranking of one of my top stores down to at least 15.  I don't have the time to spend three hours touring your store for the 5 things I simply need on my list before I both have to feed my child and sprint to his therapy.  I miss the store I once knew.  I miss the feeling of it being simple and easy, and now it's complicated and hard.  And I have enough hard in my life everyday Target.  From the moment I get up it's hard.  Now you have to make my retail experience hard too. 

While I pout I will at least give you credit that you didn't eliminate Starbucks and that that my internal GPS can at least still scout that out, because right now that feels like the only benefit to even walking into your store.

Signed one, sad, forlorn and lost special needs parent shopper.

Love,



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

Thunder & Lilacs

Perhaps it's been too long since Noah was really sick and I just became too comfortable in stability. Or maybe I try to purposefully block out the scary dark corners of his fragility so that I'm not overly frightened of what I know could happen in situations like these. I knew something was wrong by the sound on the monitor. That gasping, choking, blockage of airway sound that he makes. I ran as fast as I could, leaping over a dog in the dark hoping I could get there faster. It wasn't fast enough though, whatever had caused the airway blockage whether it be secretions or acid re-flux or a vomit that never made it to the surface of his mouth, it landed in his lungs- aspiration. I sat him up, yet I could still hear him struggle to clear himself. His father, looking on at us both in the doorway of his bedroom as I cradled him on the floor. We both knew. But had no words to even say in the moment.

The following morning it was obvious that something was wrong. Noah's happy spirits were diminished. He was in and out of episodes of sadness, his motivation to furiously tear apart pages of coloring books had just vanished. And he just laid there looking at us as if the a bigger storm was brewing. Noah was giving us all the classic signs of things were taking a turn for the worse.

We offered him a walk to give him fresh air around the block. Afternoon storms almost like clock work now, were moving in all around us. Dark heavy clouds, that were wispy and full of rain danced above me as if to remind me of my perpetual life's storms. We turned the corner on a path that leads to open space for as long as you can see. It's like looking at the ocean's horizon except it's all field for as long as you can see. And along the path every ten feet there are massive lilac bushes. The bushes so well established they are enormous in size and in full bloom. Their scent was overwhelming. Although pleasant under most circumstances, I found their alluring perfume to be invasive on my mood. The smell of something delicate and beautiful while I was under moving rain clouds above me, seemed off-putting. Almost as if nature was mocking me and laughing at my inner distress.

Noah's cough presented itself loudly, almost as loud as the thunder in the background. I watched his little brother ride ahead of us on his bike focused on his little legs pedaling. Keep pedaling I told myself. We passed a new dog behind a residential fence on the path. Must be new neighbors. The dogs prior were obnoxious and loud and very ill mannered. They would startle Noah every time we walked by with their barking and antics. This dog, a pretty Irish Setter, stood stoic in one place right at the fence almost as if he was paying respects to Noah as he walked past him. I wondered what his name was, or even how much I appreciated his calm demeanor as we passed by.

Noah coughed again, and my mind shifted from the dog to what my mind just wanted to forget. Noah was sick.

Heavy guilt exists, like if I could have gotten to him more quickly, if perhaps if I hadn't fed him ice cream at the zoo too close before bedtime with a spoon he wasn't familiar with, if I had done this or that - then maybe the outcome would be different. An all too familiar feeling that I carry like a gorilla resting on my chest for years. If only I had birthed at a different hospital... if only I had looked at the ultrasound monitor myself... if only...

The "if only's" can be so paralyzing. The mind's desperate attempt to go back in time and fix all the wrongs. But the "if only's" do nothing to help us in the moment. They merely haunt us because we are powerless to go back in time. And in the now, I have to deal with what is before me - Noah is sick.

I dreamed of heavy rains falling down on the lilacs. They still smelled fragrant, and the moisture from the rain made them only intensify in deep purple color. Lightening hit a nearby tree, and I was awakened to the sound of Noah needing me in the night. A low-grade fever. I reached for the liquid suspension Advil only to find it had been expired since February of 2018. Over a year expired. I googled quickly the safety of an expired medication, and felt comfortable enough to give it to him in a pinch. He fell back to sleep rather quickly as I sat up in bed just thinking of those lilac bushes in the rain.

It's odd where our mind wanders in times of great stress and fear. We fixate on things in the moment -- a bird... a lilac bush in the rain.

Love,



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

You Know Your Own Child Best

Mommy Groups.  I think sometimes they can be the root of all evil.  Social media has developed into a very ugly thing.  It's of course sprinkled with hints of positivity, sometimes camoflaughed good intentions, and even sometimes idiots in disguise.  A forum where everyone thinks they know it all, and are quick to cast stones.  I used to be a bigger participant than I am now in support groups, mommy groups or special needs groups.  Now I am merely mostly a fly on the wall watching the mud slinging back and forth.

Sometimes I roll my eyes behind a computer screen at what people find critical in their day; a mom complaining about how sexualized yoga pants are for a sixteen year old and wanting the community to ban them from schools so her son doesn't get a hard-on during math class; the parking line up at school and who should get top priority of drop offs; neighbor complaints - that's always a big one.  Every one and anyone seems to get on the world's nerves.  Man you could walk to your mailbox in flip flops after a snow storm and someone is going to post about it and how much your freedom to do that ruined their day.

I ran across one post today though, which was like one of those what place it is of yours posts.   The kind where you're like butt out it's none of your business.  Even though everyone seems to think they need to make someone else's business their business.

It was a mom, under the pretense of being an amazing friend.  You know the kind so amazing, that she doesn't want to hurt the tender and delicate feelings of her close friend but feels obligated... no correction - compelled to tell her friend that she feels that her child has special needs because he's not developing or succeeding as fast as her child is at the same age.

Enter big eye roll. 

First, that's not true friendship.  That's a competition of who's kid is better, brighter, smarter and excelling quicker.   Moms news flash:  it's not a race.  If a child happens not to talk clearly as a toddler it doesn't automatically mean they need a speech therapist.  Trust me I know this.

Luke didn't speak a word until he was three.  Three years old.  I didn't sweat it.  I wasn't saying oh God, I must have two special needs children.  One severely disabled like Noah, and one that won't talk to me and must also be non-verbal.  I had countless people cross lines with me when it came to Luke as a baby and toddler.  Many of which were some of Noah's former therapists.  They picked Luke apart with the assumption that if Noah had a disability that therefore his little brother was destined to as well. They see the correlation that you have one child with a "problem" so they assume your other children will have problems too. There was genuinely nothing more irritating than someone trying to step in and tell me my other child also had problems.

Luke was focused on for being left-handed, for speaking later than most kids his age, and for his need to be extra clingy and co-sleeping with us until the age of five.  I knew as a mother, there wasn't anything wrong with Luke other than he was choosing not to talk.  His receptive communication with us was just fine, he was using gestures to get what he wanted, and I knew what I was up against was that he had nothing to model communication from when Noah was showing you could have your needs met by not saying a word.  As a mom I just knew there was no real problem.  I sensed it.  I knew.  You just know as a mom if you have a child with a problem or not.  You just do.  All of us have that sense about our children.  And the day Luke decided to talk, it wasn't just one word like momma, dadddy or ball.  It was a full out mind blowing here's your first sentence that I've been holding in for three years.

To this day, Luke is a naturally quieter child.  He will only speak if spoken to, and only if he feels like he wants to or it's worth his time.  But if he does watch out because he will talk your ear off - especially if you mention anything about the ocean and sea life. But there isn't a single thing developmentally wrong with him. He's still left handed, but I don't see that as a disability, (or something that needs to be corrected by tying your hand behind your back as a therapist "kindly" suggested I do), and I happen to love that he's clingy because I know someday he's going to grow out of wanting to hug and love on me and blow me kisses before bedtime.

I can tell you a parent automatically knows if there is a problem or something off with their child.  They just will.  It's evident to them whether it be a sudden onset or something they have seen coming on all along.  And if they don't notice a problem with their child.  Chances are there isn't one.  So you stepping in on a mommy board looking for advice on the best way to approach your friend to tell her that you feel her child needs a speech therapist, just because he's not keeping up with your kid - signals to me that you aren't such a good friend.   How about you mind your own garden and tend to your own flowers.  If a mom thinks there is something wrong with her child she'll speak up and inquire and ask and seek help.  Stay on your side of the curb and don't play the superior game my child is doing A, B and C before yours so that must mean something is wrong if your child isn't keeping up with mine.

Not all typically developing children get to the finish line at the same time.  Same is true for children with special needs too.  They are all different.  It's a mixed bag when it comes to who accomplishes what and when.  Everyone is on their own time line.  It doesn't automatically mean a child has special needs because they aren't keeping up with yours.  And it's really not your place to even suggest such nonsense.  And while you're at it, quit playing the passive aggressive I'm the nice mommy just trying to help out my good friend.  No you're not.  You're the mean mommy that wants to play I'm superior and so is my kid or you wouldn't be posting on social media how best to approach your friend with the suggestion that her child has special needs and needs a speech therapist.

There is no more single best expert in your child's life than you.  And people tend to either be so bored that they just can't mind their own business or they purposefully find ways to be a problem for other people.  Don't let a "-foe-friend" in competition clothing bother you.  Just keep rocking your own mommy inner compass about your own child.

Love,

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

I Communicate When I Cry

When Noah was a baby he cried for 18 hours out of 24.  He was so distraught as a baby.  I'd bounce with him on an exercise ball to offer him vestibular input, listen to the radio in a desperate attempt to soothe, walk with him, hold him, rock him in my arms, lay him in a bouncy.  I'd do anything and everything and yet he still cried.  The first year was hard.  Until one day he discovered the world of Elmo and Sesame Street and just like that a light bulb went off for him and we found something that offered him comfort.  The TV.  I thought I was going to lose my mind.  You could so much as smile at me that first year and I would have broken down into hysterical tears.  I was overtired, feeling like I was failing, trying to navigate a world of therapies that I was unfamiliar with, a new mom to a child with special needs and dealing with the most distraught baby that you could ever imagine.

Noah is ten.  He still cries.  Not the same kind of cry as a baby.  But still cries and frequently.  As a non-verbal child, it's often his only way of communicating distress, pain, disagreement, agitation, or when he's ready to leave somewhere, or even when he's ready to go and I'm not moving fast enough for him.  There are lots of reason he cries.  Most of which I know, and some that I'm still learning.  I've never been a cry it out method mom.  Even for my typical child, Luke.  To me when a child cries, that means that they need you in some way.  And comfort has always been what my instinct has told me I need to do.   It's still like that if either of my children cries.

There's been a lot of talk in the special needs community recently - especially when it comes to a non-verbal child and do you let them cry it out?  Do you impose punishment?  Or do you console?

Noah is cognitively very aware.  He understands everything although he's trapped in a body that is physically limited and challenging in every single way possible.  Yet, he still is learning to navigate an AAC device, but even with a device - he's always going to have to rely on communicating with us through facial expressions, through vocalization tone and sounds, and through moods and emotions (example, being happy, sad or angry).  Non-verbal children just communicate very differently. 

Noah will frequently have meltdowns or get angry and cry if something is wrong - like his movie ended and I need to restart it, or if he's out of coloring book pages to shred, or if his brother took a toy away from him, if he needs to be changed, or if he's pissed off that his therapist was scheduled to be here and she is sick or can't come for whatever reason, or he doesn't get Chick-Fil-A on Thursdays.

And by meltdown it's the most heartbreaking cry you can imagine.  The kind that penetrates your soul where you just ache to make it all better.  Crying it out or punishing Noah for trying to be self-expressive to me has always felt like a cruel approach.  Not to mention that if I don't find a way to soothe Noah or make whatever it is that is troubling him better, he could frenzy himself so bad into vomiting, chocking and aspirating because he gets so worked up.  Being upset to Noah poses a safety risk to himself. 

You also can't negotiate with a child like Noah like I can with his little brother Luke.  I can't make deals, or bribe with treats or toys - it's an entirely different ball game.  A lot of parents take the approach disabled or not that kids are kids and both deserve to have the same set of punishments or rewards.  But raising two very differently-abled children I can tell you that rewards and punishments are not even close to being the same between a disabled child and a typical child.  Noah is by definition severely disabled.  He can't walk, talk, crawl, sit or self-feed.  I can't say to him you deserve to sit in a corner, or be banished to your room until you chill out, calm down or quit crying.  Likewise, there isn't anything Noah has done wrong other than try to communicate to me that something is wrong and he's trying to tell me what it is.  That's not a crime, never will be.  Nor do I view it as any form of manipulation on his part.  He relies on all of us - the entire family unit to assist him with his needs, his wants, and to help him be comfortable, healthy and happy.

To punish Noah for trying to vocalize a problem he is having would be a tremendous disservice to encouraging him to find ways to communicate with us - even if it's in the form of crying or screaming he needs to find ways to get our attention.  As Noah grew older, and the crying continued way past that of a normal age of a baby and toddler, I would stop and think about how I'd feel if it were me.  And I were trapped in this body, fully aware and completely unable to tell someone that I needed something or that I was upset.  And I would look at him with such admiration for not screaming every single second of the day because damn it's got to be hard to be him.  And he's really a joyful kid for the majority of the day.  He has learned the art of using the crying and screaming when he needs to use it.  It's not his state of perpetual unhappiness. 

And sometimes Noah is like the rest of us - where he just needs to be held, reassured and loved on and consoled through a rough emotional moment.  I never want to find ways to discourage him from using any form of communication he needs - even if that is crying and screaming.  I don't see Noah as being spoiled, I don't see myself as encouraging bad behavior from him, and I don't see myself as a parent who is failing him because I'm teaching him that he can't always get his way.   Sometimes a child like Noah simply does need to get their way.  And that's okay.  There's nothing at all wrong with that.  He's always going to be fully dependent on someone his entire life.  Promoting all forms of communication in our house has always been our goal.  And when Noah cries, it's our job to figure out why (because there is always a reason behind it), and help him through the moment. 

It might look to an outsider like we're not disciplining our child, or that we are promoting them acting out.  Know that crying and screaming for many non-verbal children is just another way of communicating. Trust that we know what we're doing a special needs parents.

Love,

  

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

Hold My Hand

When you experience a traumatic birth it never goes away.  It's the yucky gift that keeps on giving.  The one you wish you could either return or say you never wanted, yet it's just there.  Lingering, like this permeating scent that infiltrates your soul.  There are things that just bring you back to that moment.  It can be a hospital setting, it can be a familiar smell, it can be a memory of a stuffed animal, a picture, an old blog.  It can be thousands of things or just one single thing all at the same time.   While I'm waiting for Noah to wind down which takes hours - and by hours I mean I can sometimes be up all night, I often fill my moments with reading and television programming to keep me alert while I tend to his needs at night.  I latch on to a variety of shows, Netflix documentaries, and movies to keep my mind engaged so I don't fall asleep until he's done needing me.  

It's Tuesday.  Tuesdays are This is Us.  I kind of had this gut feeling, or inclination when Kate, one of the main characters got pregnant that it wouldn't be a smooth sailing birth or even one that leaves her child with disabilities.  The show is really about continuous life hardships without that glossy happy ending that so many people crave.  I know what it's like not to have a happy ending, so I often gravitate towards things that feel real, authentic and far from sugar coated.   Tonight was the night I anticipated - the birth of Kate's baby and one that wasn't going to be the great happy ending.

 
Chris came into the bedroom to help me fold towels that I left in a basket half way through the episode.  He sensed that I was tired and worn and took it upon himself to fold while I laid curled in a heap of pillows hiding tears welling up in my eyes.  He glanced at me and utter those words "what's wrong" before he looked up and realized that I was watching something difficult to absorb and digest.  He walked around the other side of the bed to me, bent down to hug me, wiped mascara that had smeared through a handful of tears that had escaped, and stood back up and just stayed by my side holding my hand for the entire last half hour of the show.

And I could feel the emotion through his hand.  It bothered him too.  We were both there.  And it's unique to both of us having fought through a very scary birth, emergency c-section, and one that literally left Noah and I in critical condition, and ultimately severely disabled for the rest of his life.  So when you see a story line that eerily mimics what we experienced it takes us both back to that moment that we so desperately wish we could change.

And sometimes a show can get it super close to what it's all really like; the family dynamic, the waiting room agitation, the lack of information about what is happening to your loved ones, waiting for news that isn't timely, right down to having your own memory association with familiar places and things that take you back to your own personal tragedies.  The stunned husband trying to deliver the news, both a mixture of relief that both survived, but conveying the news that things are problematic.

Chris is always so stoic, he's just this beautiful rock and has been our entire marriage.  The greatest man I've ever known.  He's strong, and comforting, and understanding that we're going to live with these feeling for a lifetime, and he offers such grace about that fact.  We will to some degree always be 'walking wounded parents'.  And we're okay with that.  We don't ever try to hide or disguise that these feelings will creep up on you from time to time.  And I'm comforted in knowing we're both feeling the same things.  It's ours alone, and something we carry together.  And through the underlying sadness of what happened to Noah has solidified us in the most indescribable of ways.

I'm grateful that he holds my hands through the sad parts, whenever they may hit.  Sometimes, these feelings can happen to you out of the blue, sometimes you can kind of anticipate them.  But we're together in it - whenever it does.  Story lines that you could have written yourself sometimes prove to be a bit hard to swallow sometimes.  I think perhaps in an odd sort of way it's cathartic or therapeutic.  It feels a touch like purging a bit of stored up feelings each time.  A sense of relating, empathizing, and knowing the journey.  It's not an easy one for anyone that has been through it.  We're in this permanent club that no one ever wants to be in.

Our love is so strong because we've been through the worst of the worst and have faced so many challenges throughout the years with Noah, and we both are in it together.  Holding each other's hand as each of us remembers from time to time.

"What cannot be said will be wept"

Love, 



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

A Miracle in Heaven (A Letter to Noah)

Dear Noah,

We learned today that your the man that came to your bedside when you were removed from life support as a baby and the one who played a huge role in your miracle went to heaven on February 16th.  Your father and I are still trying to absorb this news. There are a lot of feelings for us, because in our hearts and soul we know that you likely wouldn't be here had it not been for Bill.  All of us in that room witnessed a miracle.  You went from imminent death instantly to breathing on your own and your oxygen saturation coming up within seconds of him placing his hands on your tiny foot and praying.  There was no scientific or medical explanation for your why you didn't go to heaven.  It was also impossible for a stranger to get into the NICU without being on any approved list.  Yet, here he was this man named Bill who said he was sent to pray for you.  No one even knew we were taking you off life support.  We told no one, not even our families of the time we'd were going to do it.  Only God knew.  And he sent you the most beautiful miracle in the form of this stranger, named Bill.  He held your foot and you looked up at him and held his wooden cross.  Even though to this day you cannot hold anything in your hands, you were always able to hold onto that wooden cross around his neck. 

Bill was one of those very special beautiful souls.  He just was so authentic in his faith, and radiated with goodness.  And he believed in you so much right from the very start that he gifted us with the prayer of healing. I know there are people who can never understand the gravity of what we witnessed happen. You would have had to have been there to see it.  But your dad and I know without question that you wouldn't be here today without him. 

We've decided not to tell you about Bill's passing.  Not because we want to keep things from you, but because we know that the heartbreaking pout we'd see in your face, and the said deep sorrowful wail that only you know how to deliver in moments of your own sadness.  And for me, I suppose in some way, I worry that the knowledge of his passing may have some effect on your drive to continue thriving, as odd as that may sound because the two of you were uniquely connected.

It's been several years since we last seen Bill, he fell ill with cancer, and our lives were filled with days of therapies, appointments and challenges.  Although I knew that Bill had fallen ill, I was in denial that he wasn't ever going to fully recover or get better.  After all how would it ever be possible that God would call an earthly angel home?  I kept reassuring myself that Bill had more work to do here, and that he'd surely make it to 100.  Bill died, just days before his 80th birthday.  I feel deep regret that I didn't work harder to get you to see him one last time while he was sick.  And I'm sorry for that Noah.  He loved you so much.  He'd make your picture a screen saver on his computer, he created a prayer line in your name, where thousands of people all over the world would write in to noahprayerline1@comcast.net and hundreds of people poured into prayer all on behalf your namesake and the miracle of life you had been given.  He was always there for our family, he offered spiritual words of encouragement, enlightenment on the hard days,  and always the power of prayer.

Bill was so devoted that he was also there the day that your little brother was born he stayed countless hours while I was in labor.  I think deep down he wanted so badly to protect your little brother in the same way that he did you and to see both of you into this world to live and be well.  Luke's birth had it's own set of complications and I just remember him saying that things would be fine.  And I felt this divine reassurance that we'd all be okay.  And although Luke never had the same connection you did to Bill, I know that he cared for you both very much.  It just feels so surreal.  I know that Bill has to be up there checking in on you.  How could he not be? So we're going to just keep operating on that, as if Bill is still around.  Because I can't bear the thought of you knowing of his passing.  Someday when the time is right your blog will belong to you and you'll know.  I'm sure he's not far away from you.  You were always a pretty big deal to him and I know even beyond this earth still remain so. 

In Loving Memory of Bill Gilbert - The man who forever touched your life with a miracle.

Love,



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

Make No Mistake the Inner Bitch is Sometimes Dormant, but Never Dead

It's been a long time since my last public blog.  Even though I blog a lot in my head, or on paper, and notes that swirl around in my mind.  My subtle public quietness isn't because there hasn't been anything worthy of discussing or throwing out there into the world, but more rather methodical thinking.

While lots is new, some things aren't.  The same old fighting for your child with special needs always ongoing.   That's never new.  In fact, it often feels so ridiculously old it's like playing the same sad damn song over and over and over again until you have the words so sickly memorized in your mind.  It's exhausting.  Lately, I have found myself requesting less, pursuing less, asking for less because of the pure hassle of the battle the ensues when I do.  It's comes with such predictability - one that is never just easy, smooth, or even anything that makes much sense anymore.  Sometimes however, I don't even have to ask for the fight.  Sometimes the fight just lands on my doorstep. 

For example, Noah had been receiving diaper wipes on a Medicaid Waiver program called CES (Child Extensive Waiver).  It really provides for many of the things that traditional (EPSDT) Medicaid doesn't cover. Kind of like a catch all for additional needs, like respite, enhanced homemaking, adaptive recretational, dance, music, and movement therapies, medical supplies etc.   Noah has been receiving diaper wipes since around 2014 - so a long while.   His CCB (Community Centered Board who manages his CES Waiver), had been providing them through Amazon purchases that were just sent directly to the house.  About a year or so ago, they found a vendor to supply them, as a means to reduce costs.  It's always about how much money they can save (and or pocket depending how you look at the transparency of things).  In that short time Noah's particular brand was being supplied through the vendor, however without warning the vendor cut off that brand and went to generic or limited brand supply.  The CCB was unsuccessful in finding any other vendor to supply wipes because they just don't do it.  Rather than go back to ordering through Amazon like they were previously doing, they stopped his deliveries with the excuse that (ESPDT) traditional Medicaid should now fund them.  Now we all know, in special needs parent land that Medicaid doesn't supply diaper wipes.  Bummer but they just don't.  They supply diapers but not until after the age of 4, with the reasoning that we should naturally be diapering our children until of natural potty training age (even if our children have zero hope of ever potty training).  But that's the stupid rational they use for the age requirement.

True to my style, when you piss me off - I will shout it from the roof tops and I will pretty much involve and include everyone in the circumstances so that everyone can see the blatantly stupidity of the situation.  It's really been my policy if you don't want the world to know what you're doing to Noah then you're better off just providing it or I will make a big scene even if that includes the media, or doing news interviews.  I don't play games, and will broadcast the injustices that happen to Noah.  I have nothing to lose, as the State has already identified me as a "problem advocate parent" years ago so I already have that reputation of being a fighter parent.

So in this argument of who should continue providing Noah diaper wipes as he went without an order for months, Directors and Specialists at Colorado HCPF, passed and exchanged emails back and forth, deferring to each other for guidance.  This was their determination:

"Department DME and EPSDT policy staff have confirmed that while wipes are not a covered benefit under the DME, state plan benefit, they should be submitted with an EPSDT exception request for all members under age 21.  If the wipes are denied with the EPSDT exception request, they may be covered under the Specialized Medical Equipment and Supplies (SMES) beneift available through the member's waiver.  Wipes mayt also be funded under the SMES benefit if the member has a documented provider access issue by noting which DME suppliers were contacted and their responses.  Either the denial or the access documentation should be noted in the BUS and kept on the file at the agency in case of an audit, and it must be updated yearly with the new service plan.  This will help conserve the waiver funds for other services."

That's all fine and dandy, however there are no vendors that supply wipes, and I never ever heard of a family getting an exception granted for diaper wipes through Medicaid.  They just don't supply them and no one at EQ Health is going to stamp an approval on that.  Those fools won't even approve a new wheelchair for Noah due to growth - as a medical necessity.  Instead their rational is carry him through Target - because that's so possible to carry a 10 year old child through Target. 

To add insult to injury, the program administrator for EPSDT in Colorado for Children, replies that "EPSDT is that best kept secret kinda thing," implying that the help is there, we all are just sort of kept in the dark about it.  No fault of their own of course.
 

So really the question comes down to, is Noah being singled out?  Perhaps.  I haven't heard of any other families having to go to war all of a sudden over diaper wipes.  Certainly he's not the only child receiving them.  Lots are under waivers.  Hundreds in fact.  How do I know this?  Well I actually manage my own social  networking special needs groups where I advocate and guide other families and there are no reports of any other families experiencing these same problems at the moment.  In the end, after I included lots of people I know and work advocating with into these corresponding emails, his CCB has temporarily yielded and is ordering his wipes once again through Amazon, by way of his CES Waiver, not traditional Medicaid.

So all you parents out there that don't have your child on a waiver - go ask for your exception.  It's in writing.  I have it, I've read it, I quoted it.  Do it.  They say that they'll grant exceptions so let's hold their feet to the fire.  Supposedly, the program administrator states they have even made exceptions to the 4 and under rule for diapers too.  So if you have a 2 or 3 year old and need diapers go ask for that exception.  I want to see them grant it.  And if they don't let me know.  Would love to know why since they say an exception will be granted if you can demonstrate medical necessity.  Let's just work this "best kept secret" to our children's benefit.  

Once upon a time (pre-Noah) I wasn't like this.  I was quiet, sweet, non-combative.  I hated conflict or fighting.  I'd never sass you back.  I'd never raise my voice.  But... after Noah totally different ball game.  I have had to learn to embrace that inner Bitch we're all born with.  It's in there.  And every mother has it.  You never ever want to mess with an angry mom especially when it comes to something about providing and helping her child.  And even when I decide to take a break for my own mental health and well being and pick and chose how hard I want to fight for something, it doesn't mean I'm just going to take it laying down.  I can wake up that inner bitch at any time if I have to fight for Noah and what he is entitled to.   And all you moms out there who may come across this blog at some point in time.  Don't feel guilty for having to be that way.  Your child is depending on it.  I have tried the gather more bees with honey approach.  They don't listen to you that way.  These are feral bees.  Honey doesn't mean anything to them.  You can't sweeten them up.  The nice friendly approach isn't going to work.  You're still going to get a denial and they'll still be laughing behind a desk at your child's expense.   Trust me, I don't relish or enjoy having to go at people in this way.  But, when it comes to your child, you just can't be meek about them shafting your child.  Wake up that dormant inner bitch - and go get em'.

Love,

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