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.

My House of Horrors

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,

Love,

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

The Unapologetic Tully

August always seems to be transitional.  Yearning for the last sounds of the locust before the leaves fully fall to the ground and as you for wait for the summer season to be put to sleep.  Coming off the heals of a very painful and emotional August - very much a season in my own life, I took solace in a Netflix movie; Tully, a story about a struggling mother.   

It only took minutes for me to wrap my arms and heart around the main character Marlo.  You meet her with two children and expecting a third.  From the beginning it isn't about this glorious life wrapped up in a perfect motherly bow.  You know the kind of illusion we all paint to make people think that life is blissful and unblemished with hardships.  It is obvious from the opening scene that her child Jonah has special needs, as she strokes him gently with a sensory brushing technique.  It was an instant connection for me.  I already understood where we were going from the very beginning - a journey much like my own, perhaps just on a slightly different level.

I absorbed myself into her feelings, almost as if I could have written it or lived it.  I think in a variation of it, I am still living pieces of Tully's story and perhaps I always will be.  The mistake is the belief that this is a story about postpartum depression, it's simply not. 

While Marlo did admittedly experience that with her second born Jonah, her third birth isn't really the cause of her struggle.

It's rather a story of versions of yourself and feeling lost in what once was or what no longer is.  There are "before" and "after" periods.  Sometimes there are many "before" and "after" periods of your life.  Not just one defining moment that separates the two but a collection of many.  You still look back while trying to move forward.  Trying to navigate where you came from and where you are going.  It's not easy.  Especially when the road ahead is much harder then what was behind you.  Your carefree existence, lack of worry, minimal problems and then one day you realize you traded it for sleepless nights, constant tears, challenges beyond anything you could ever imagine, a host of problems and obstacles.  And in the middle of the multitude of life's hard curve balls of your current life you still know deep down you are blessed; but even in that knowledge it does not lesson those overwhelming feelings.  You still ache for thoughts of where you came from, what could have been or should have been, or what you think you wish you could change.

The premise of Tully is well crafted.  Marlo has a wealthy brother and perfectionist Sister-In-Law that offers to hire and pay for a night nanny to assist her through the night with a new baby as a baby shower gift of sorts.  It's blatantly apparent that Marlo feels like she can't quite measure up or relate to her Brother's wife's ideals or lifestyle and is hesitant of feeling like she needs to accept that kind of night time help.  She's resistant to the idea, as most supermoms would be.  The idea that we can't be all things to everyone or do all things somehow seems like admitted defeat.  The movie script however leads us to believe that Marlo does indeed accept this generous offer and hires the night nanny, who's name is Tully.

Tully, this beautiful lifesaving friend that quickly becomes Marlo's hero diving into rescue her emotionally, physically, spiritually and soulfully.  Tully steps in to fill all the missing gaps; making perfect cupcakes because Marlo lacks the energy to be that perfect mom who makes goodies for school events, cleaning her home when she's too exhausted in the middle of the night; taking care of things that Marlo lacks the energy and time to do.  Tully rescues her from sleepless nights with a new baby, she nurtures the broken soul, feeds her understanding and compassion without judgment and truly understands that "You can't fix the parts without treating the whole." And that is exactly what Tully strives to do.  Treats all the broken parts as a whole.   Tully is carefree and free-spirited, young in her 26 years somehow she feels like a reminder of what Marlo has forgotten. 

Marlo struggles with coming to grips with the challenges of her life.  A child with a severe sensory processing order is no joke.  Her son Jonah keeps getting defined as "quirkie" without any real diagnosis, but it's clear that he has unique needs that are not being met or addressed by his school, and that Marlo is completely unsupported as a parent by those in her community as the school principle informs her that she needs to find a PARA aid for her disruptive child in order to keep him enrolled in school - one of which she is fully financially responsible for funding and providing to accompany her son at a school all day.  This leads to an eventual explosion of Marlo's feelings when the principal dismisses her child from school, with Marlo shouting at the top of her lungs that the world views her child as "retarded." 

In that moment I just cried so hard.  Because I can't tell you how often I have felt that way.  That people look at Noah as nothing more than a word.  A sad parent who drew the short stick in life with a child that is "damaged" and "disrupted." We carry these labels.  We all do.  And my label?  The struggling mom.  I am that mom.  Whether you want to look away and pretend that I'm not.  I am.  Sure I can present this picture perfect have the world by the tail and everything is under control and managed persona just like Marlo.  I can do tap dances with the best of the best.  But underneath it all, I am aching for a Tully.  That hero that will step in and fill the voids. And provide all the answers for all the really shitty parts that life has to offer.

While many claim that this is a movie about mental illness I don't see it that way.  While it is presented in a way that may imply Marlo has lost touch with reality she hasn't.  She recognizes who Tully is, she knows that.  Tully's character was merely a cinematic presentation of her "before."  Not someone that she truly believes existed in present time. But we're led to believe that is the case because the movie needs us to in order to fully understand the meaning and appreciate what Tully truly represents.  What if your younger self could be the one to rescue you?

Marlo lacks a support system, she's truly doing it solo.  And while she has a great husband he's oblivious to the extend of her needs and challenges.  He's absorbed in work and in his spare time indulgences in video games.  Leaving Marlo to feel undesired, overworked, and like maintaining the household and the kids are on her shoulders.  Her husband Drew, however isn't to be hated or disliked.  He genuinely does care about Marlo and his family, he just never fully seen or understood the level of Marlo's struggle or her needs primarily because Marlo did a good job of trying to camouflage what was going on and project that she had everything covered and needed no help. Marlo wasn't the type of woman to raise the white flag and surrender.  So she invented Tully.  A further fabrication in order to convince her husband she was getting the night support she needed to continue to be a superhero to her husband, children and community during the day.

Marlo is in this state of questioning of how she got to this moment in her life.  And from Tully's perspective she's like cool, I have this life and maybe it's hard but it's incredibly beautiful. She is enamored with what the future holds, while Marlo feels a sense of being forlorn and lost.  How the two merge into a life's understanding which is really an expression of profound understanding. Never once is Tully's position one of disappointment for how her life is destined to turn out.  She's kinda like cool... hey it's messy and complicated but I'm okay that it turns out that way.  Can you imagine if our younger self gave us such forgiveness and grace and complete non-judgment for how the ending of our lives turns out?  And never placed blame that things turned out like they did. 

I remember reading comments on some of these mommy boards on social media when this movie first came out.  Most moms oddly very critical of the movie.  They wanted a happy ending and felt it wasn't.  One commented:  "Movies are to entertain, enlighten and inspire. While we may not have ultimate healing in a particular season in our life, we need to know that it is achievable. We don’t go to movies to see complete road blocks."

Maybe that's true, maybe primarily people go to movies so they can get caught up in glamorous dramas or movies where it's all rainbows and unicorns at the end or a fantasy that will never exist. But what if we lost ourselves in something more real.  What if we allowed ourselves to empathize and relate to a character in such a profound way.  I think Tully was so impactful for me because I feel it's very rare that someone can identify with my life.  And Tully felt like we mutually could identify with each other.  Trying to come to terms with the "before" me and "after" me of any particular period or time in your life.  

I know there are lots of Marlo's out there, I see them in special needs groups all the time.  I recognize their cries for help.  I understand their pain.  I feel it. I live it.  I know it.  And the world too often turns a blind eye to all of us.  They look away if they detect anything that to them would require them to participate in someone else's life in any real meaningful way.  Which makes self-care even more critically important.  Sometimes when no one is there you have to be your own hero even if it just means that you rescued yourself in a hot shower for 20 minutes so you had the strength to keep going on the rest of the day.

The movie ends like it begins.   With Marlo working on her son's sensory challenges and working on a brushing technique with him.  Her own journey and her incredible love for her children who now are a big part of her "after." It's not that Marlo's "after" is eternally sad, we should not look down upon but rather admire her journey for she's found ways to move forward. 

I think Tully is a must watch. If you haven't seen it, take it upon yourself to add it to your Netflix fall line up.  Cuddle up in a chair with a hot cup of tea, with Kleenex in one hand and just absorb it for what it is.

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 Mom (On Mother's Day)

Dear Special Needs Mom,

Today I stood and watched you lower a ramp from your vehicle, and get down on all fours to unlatch safety belts from your child’s wheelchair. 
I noticed when one of the belts snapped your hand causing it to bleed.
You didn’t flinch, nor tend to your wound.

Without pause you continued on. You gently rocked the wheelchair into a safe position to take it down the ramp and out of the vehicle, mindful of your little one’s arms and legs. 

Raising the ramp with one hand and holding onto the wheelchair with the other.
You walked around to the other side of the car where I watched you unload the other half of your heart…your youngest child waiting patiently for you to free him from his seat.
You braced the wheelchair with your leg so it didn’t inadvertently roll into the street, while lifting your other child out of the vehicle. 
You reached for your purse, one grocery bag, and a bottle of hand sanitizer that you placed in your pocket.

Holding one hand of one child and pushing your other son’s wheelchair with the other, I caught you briefly recognizing your wound, and although I’m sure it was throbbing you carried on as if nothing had happened. 
For a moment your eyes caught mine.
My eyes holding back the tears that recognized so much of myself in you. 
For I too, am just like you.

Temporarily disguised as just a person on the street corner, my special needs life waiting for me at home. 

I wanted to approach you to say hello, but I could see your determination and focus and knew that I would only serve as a distraction from your shopping mission. 
I wondered what you were rushing into the store get; a carton of eggs, chocolate pudding for your children, and a specific brand of apple juice – the only one that your child with special needs would drink – knowing that your one small bag could only hold a handful of essential items.
I was walking to my car in awe of another strong mom, when I turned back into the store.

A flower display not far from the entrance with a handful delicate flowers -  daisy mix with pink carnations and a single rose caught my attention.
 

A bouquet card lay in the middle.  I made my purchase and quickly filled out the card:
“A Special Needs Mother’s Love is the fuel that enables a normal human being to do the impossible. 
Happy Mother’s Day,
Love a fellow Special Needs Mom”
I left the bouquet on the windshield of your car, hoping that it would bring you sunshine in a day that is often filled with a balance of difficulties and joy. 

Every now and again sometimes we just need someone to see us, to know we’re not invisible and we’re not walking the journey alone.

Love,

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