Sunday, June 9, 2019

Thunder & Lilacs

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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.


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

Tuesday, May 21, 2019

You Know Your Own Child Best

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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.


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

Monday, April 29, 2019

I Communicate When I Cry

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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.


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

Tuesday, March 12, 2019

Hold My Hand

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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"


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

Tuesday, March 5, 2019

A Miracle in Heaven (A Letter to Noah)

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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 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.


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

Thursday, February 28, 2019

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

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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'.


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

Sunday, December 2, 2018

My House of Horrors

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It was the middle of August, and an ordinary day.  Our normal routine, my mom came over to assist me with respite and help with Noah and I fetched him his normal Thursday Chick-Fil-A meal.  My mom stayed for lunch with me and the boys and headed home and I carried on with a load of laundry. 

That's the really strange thing about when tragic things happen.  They come out of nowhere.  They catch you on an ordinary day, at an unexpected time when you are least prepared for it. When you are comfortable, much too comfortable.  The phone rang - my mother and I figured she was just calling me to tell me that she took a detour home and found some shopping fun and wanted to tell me about it.  But it wasn't that at all.  It was the worst kind of phone call imaginable.

She's screaming hysterically and my body froze up in defenseless mode, frightened, and helpless.  I can hear EMT workers in the background and her sobbing that the person who has lovingly filled the father role in my life for over last twenty years has had a massive heart attack and was non-responsive.  He wasn't breathing, didn't have any heartbeat and it was ten minutes and counting.  I could hear EMT in the background saying they didn't think he would survive transport, and I screamed at them not to stop - not to stop trying.  And not to give up on speaker phone.  Because the fight drive in me says you never give up - you just don't.  The little voices in my head kept saying ten minutes... ten minutes is so long... ten minutes.  Noah was thirteen minutes... look what can happen in thirteen minutes without oxygen or a heartbeat.  But I still said ten minutes I have hope.  I can do nothing for either of them as the fight for life again is seven miles from me and I can do nothing as I lay crumbled on the carpet of my bedroom floor crying into the phone with Luke watching on, terrified of what has his mother so distraught.

I just kept telling God over and over you can't do this to me right now, I have no one else.  They are all I have the two of them.  There is no other extended family.  I can't do this alone yet.  I just can't.  And God has to know that.  The nightmare was far from over, but hope came as they were able to recover a heartbeat during the ambulance ride.  Ten minutes.  That's all I could think is ten minutes.  What will ten minutes look like if we get to keep him.  Minutes rang out in my head like a ticking bomb - time never in my favor.

My mother was transported by a familiar face to the hospital.  An EMT that ironically has come to Noah's rescue when he had a crisis at home.  He was familiar to me and my family, he remembered us, like an angel God sent to yet another crisis in our lives.  I got word that he was transported to the nearest hospital for emergency surgery.  That hospital was the same hospital that Noah was born at.

My house of horrors.  And I had no choice but to go back there.  It had been almost a decade since I stepped foot in that hospital.  I swore I would never go back, never.  Never back to the place that stole my child's future from me, nearly killed us both, and in the process not only robbed him from justice in a court of law, but then came after us for more than $340,000 in legal fees and destroyed us financially for us seeking justice for our child.  They are the worst representation of evil to me.  A place full of lies.  A place of deception, a place that fabricated and relished in painting an inaccurate image for a jury to save themselves at the expense of a child that they hurt. A place that stole every physical ability from my newborn child, a place of heavy neglect and zero remorse or accountability.
I was overwhelmed with fear of not knowing what I was walking into.  Would the news be favorable?  Would he make it through surgery?  Or was I waiting for death.  The automated doors opened and I paused, the smells, the sounds, the familiar decor grabbing me by the throat in an invisible choke hold stealing the breath of my very existence from my body.  But I had to move, I had to go through those doors.  I wanted it to be another nightmare in a long serious I can't shake, but this was reality. 

I was alone, my boys home with my husband and I had to face this big monster of a place.  I made my way to the second floor to find a hospital chaplain tending to my distraught mother.  I resented them too.  I resented all of them.  Even though they were not players in Noah's tragedy everyone felt like the enemy to me.  I wanted to battle anyone and everyone I seen, overwhelmed with such hurt and pain.  I wanted no one on my side not even a hospital chaplain - not even the very person designed to offer God's word in a time of crisis.  I wanted no part of it.  But here I was regardless. 

I was instructed to go down and retrieve his belongings and possessions that they had to take from him during the ambulance ride with the front desk.  I left my mother with the chaplain and found my way back down stairs, aimlessly I wandered as if I were lost and had no map even though I knew quite well where to go.  I walked up to the desk, but before I could tell the receptionist what I was there for, she said "oh honey are you here for the mom and baby class?"  It's on the first floor to the right.  And I lost it... I just died a thousand times inside.  Out of all the things she could have said to me and you had to say "mom and baby." 

I collected myself long enough to simply say I needed clothes from an ambulance ride.  She detected my distress and left her station to explore my need.  Quickly retrieving a bag of shoes.  I grasped them with sweaty palms and resumed my mission of tending to my mother on the second floor. 

I went into automatic responsibility mode.  Calling all the family and gathering phone numbers.  I had to be the the strong one.  There was no other choice.  I had to be the roots of the tree in all this.  The roots that the wind could not touch.  Unshakable.  I just had to remain unshakable.  But instead the pit of my stomach had dropped, and hope felt like a lingering word I was trying to chase, and here I was in the place that destroyed my life and my child's life. 

News arrived fairly quickly within the hour, that a stint had been successfully placed, with a very guarded prognosis due to the missing minutes of time without a heartbeat and breathing - the only saving grace in our favor was CPR was administered immediately - and again I chased hope.  We sat for hours without word, the hospital staff kept politely putting us off when we asked for updates.  Never a good sign.  Finally admitting three hours later they were trying to get an uncontrollable bleeding under control from his nose and mouth that had no explanation.  Like a domino effect, one problem turns into several in a matter of time.   I sat there in a waiting room full of stunned expressions, motionless bodies, and a presence of uncertainty for all of us.

You can never really prepare yourself the visual of someone fighting for their lives.  Ventilators and all the machines administering countless drugs to stabilize.  Nurses in and out.    No one can tell you what the future will look like.  Will he recover?  Will he know who I am ever again?  Will he ever be like he was prior? Thousands of little questions run through your mind as you are trying to get your footing around what is happening.  And you can't even breathe because hospital staff immediately sends caseworkers to work on last wishes and final directives, questioning you as if death is imminent.  They invade your space like parasites waiting to just feed on tragedy.  Hounding you multiple times if you refuse to answer their questions.  Their timing always less than favorable.  Like they haven't been taught proper etiquette on how to let someone digest what is before them before being in their face about last wishes and demanding who has the rights to make end of life decisions.

I could feel the hostility within me festering.  I kept reciting to myself, God give me strength for they know not what they do.  But wait - they do know what they do.  Yet they continue edging you.  My main goal was to provide for my mother, to feed her, to take care of her, to make sure she could get through this.  I brought breakfast, made sure I was there before shift changes, texted family updates, and would go home and then take care of my own family in between. Each time I had to walk in that hospital my legs felt weak.  The sound of the elevator chime as if someone was smacking me across the face.  Nurses started to detect that I wasn't keen on a lot of things, and now here I was ten years later with my own medical degree just to care for Noah - knowing more than I ever wish I did.  Enough to even know that they were purposefully sedating him unnecessarily because they didn't have the staff to accommodate trying to ween him from a ventilator on a weekend.  I verbally cornered a nurse on her actions, to her credit she she didn't dispute it, but there was nothing that could be done.  The following day she offered me yellow socks as a peace offering.  I accepted the gesture.  As God would have wished me to.  They were cooling his entire body, just like they did for Noah's brain cooling to try to minimize brain damage.  The cooling process alone eerily familiar.  The same kind of spine tingle you get when hearing a door that creeks when you open and close it or nails running down a chalkboard.

After five days, the ventilator was removed.  The moment of only where time will tell.  His first words, "this sucks."  Followed by lots of swear words... encouraging.  Except he couldn't remember what year it was, or days and couldn't tell time.  Cognitively they hand you this paper - explaining brain injuries.  Like I was unfamiliar to it.  I know what happens to the brain, I see it in Noah every single day.  I didn't know what to think - how bad will this be?  Things weren't right, that was obvious.  But was it drugs?  Or was this the "new" altered person.  Seven days and we were set free - guarded of course, on oxygen and a lot of lifetime medications. Only time would tell.  A relief to have put the actual house of horrors behind me.  But again in a place where I had to watch the dynamic of a very frightened mother, and play the wait and see game.  Of course with anything there are things that are never the same - but I would say for the most part God blessed us with nearly complete restoration. The best I could have hoped for given where we started.

Three months later I of course found myself back in the house of horrors - this time visiting an older brother fighting a complications from surgery and a ruptured appendix.  The same feelings just flooded back.  That hospital that I cannot escape.  I don't think people likely can understand how paralyzing that place is for me.  And what it really does to my entire soul.  I could only bring myself to visit once, relying solely on updates from my mother.  Not because I didn't care, but because I just couldn't force myself to do it continually, as terrible as that might sound.  It was more about any attempt I could muster at self-preservation because it was taking it's toll and I could feel it taking over my heart, mind and spirit.

I waited a long time to blog - months.  In fact I wasn't even sure if I could share any of this, not because I fear standing in judgment, but because I wasn't really sure I could ever talk about it.  But I think it needs to be talked about on some level because I am not alone with having a haunted house.  There are millions of mothers just like me that have to walk into a place or go back to a place that changed the course of their entire lives even more devastating when you have to face that they harmed the dearest most closet thing to your heart in the process.  I am not unique.  We pack away these feelings thinking we won't ever have to go there again.  But when you least expect it - you are often forced to go back.  And none of us are alone in having to periodically face our horror.  And that horror will always exist.  It will never ever go away.

I think the hardest part is now trying to adjust to the unleashed "fear" so to speak - the reminder of how temporary and how fragile we all are.  Every breathing sound for Noah puts me on edge - likewise I see the same on guard feelings in my mother's eyes now too.  We are both on fragile ground.  Walking uncertainty.    Instinctively this hospital felt like I was walking towards something that my soul said I should run from.  That place that puts you on caution and high alert. And you wait for the monster who inevitably is chasing you.  The place where you're afraid to relax because you know the other shoe could drop.

“There are many ways to be haunted, not all of them supernatural. From photo album to love letters, the memory of bad choices, broken promises, lost loves, and scattered dreams can often longer far longer than the glow if satisfaction from our greatest accomplishments. Indeed, the most frightening ways to be haunted may be in the many ways we haunt ourselves.”Tonya Hurley,


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