Sunday, October 6, 2019

Raising Dion: Disability Hit and Misses

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Wednesday, October 2, 2019

The Nightmare called "The New Target"

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

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

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

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

Why Target?  Just why? 

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

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

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


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

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.