Thursday, March 26, 2015

Co Swim School: The Guppie and the Pilot Fish

Bookmark and Share
Maybe it was just chance.  Maybe it wasn't.  During a quest to seek out touch up paint I found myself at the closest paint store to our home.  Sherwin Williams only 2 stop lights away.    Almost 7pm at night, the lights next to the paint store lit up like a large neon blinking lights - okay they didn't blink but in my mind the sign grabbed so much pull of my attention that I felt compelled to just go in.  Explore it as an option for Luke to do swim lessons I thought.  The small space told me it must be a very small pool to be positioned into a strip mall like that.   But I was very wrong.  Triple the size of Noah's warm water pool, I was simply in awe.  The office attendant was lovely and polite.  I had neither child with me, so it was easier for to feel out questions without scaring them off with a visual of a child in a wheelchair.   It was really busy, and looked very popular with other parents in the community.   I asked first about lessons, pricing and availability for Luke, then figured I had nothing to lose by mentioning Noah.   Their pool was certainly appealing to me, as it's heated between 90-92 degrees and salt water.   And with Noah's contact allergies to the chlorine at his warm water therapy pool I thought it might just be a good option for him.   The young lady took down my information, and said she'd check with the owner and get back to me about including Noah.   I kind of expected it to be a giant no.   Noah's physical challenges are great and had the potential to scare off any chances of swim school. 

But much to my surprise, they agreed to let Noah attend, and no less placing him with a swim instructor experienced with children who had special needs.  Ironically, I'd learn much later that the owners themselves, had their own child with special needs and worked teaching with an emphasis with special needs children.   How lucky could I get? 

Because Noah needed a lot of hands on attention, we had to opt for a private class for him, which really great.  And we enrolled Luke into his first set of classes.  Everyday for the first two weeks, to get his feet wet so to speak.  Luke entered as a Guppie, who will be soon transitioning to a Clownfish, and Noah, well I gave him his own little fishy title of Pilot Fish - fitting because of his love of airplanes and because he's swimming alongside his instructor, Mr. Andrew.

Noah has been doing wonderfully, he's excited and looks forward to it each week.  The swim school even has embraced Noah's physical needs and ordered him some adaptive swim devices, and are working on building a changing table to assist him with his needs.   Mr. Andrew is just fabulous with Noah.  I knew almost instantly that he was a perfect match.  Mr. Andrew has a soft patience about him, natural caregiving presence and is really receptive to Noah's needs.  He's also very complimentary of all the little things Noah can do himself like how he kicks his legs alternating in the water.  And he's got the strength to handle Noah when he gets excited and wants to arch backwards.

Luke is almost at the end of his first two weeks - with one day left to go, before he transitions to once a week.  His first day was rocky and within his first five minutes in the pool found himself chasing after a toy that had drifted and landed at the bottom of the pool trying to chase after it requiring full rescue by a lifeguard.   Certainly made my heart stop, and flashes of every special needs child  I know with disabilities related to near-drowning come to my mind.  They got him up quickly and he didn't cough.  He looked stunned, confused and petrified.   The next day came with tears, and tremendous apprehension.   By the third day he was over his fears but then onto other group complications.   Luke likes to splash.   And by splash I mean a lot.  And often without following the instructor's command to stop.  We're working on it, and coaching him a lot at home.  We are reassured that he isn't the only child that has splashed.  But at the same time it sucks that it's my child doing the splashing at the current moment.   And I kind of feel that if I'm already the elephant in the room with a child in a wheelchair, that my typical child will gain a reputation for being defiant to the rules.   I could just strike out twice - despite my best efforts to try to blend in with all the other parents.  And you always worry people are going to think it's reflective of the job you are doing parenting.   I have no idea what the other parents in Luke's class are thinking, but part of me thinks they are counting down the days until their children don't have to endure my child's splashing.
Luke while the least skilled in his class, tries hard to float.  This is his first exposure to a group of children and the first time he's ever been even near a swimming pool.  He's only played with two other children around his age in his entire life for maybe an hour each time at best.  Socially I think Luke is doing well with others.  But I've noticed his strong desire to put his classmates first.  He points to who he thinks should be next to swim, leaving himself last.  If you didn't know Luke you'd think he was doing this because he was scared, but he's not.  He's grown comfortable with the water despite his rough first day start.  He's doing it because he wants to put the other children's needs before his own.  Just like he does at home as our entire family unit must place our needs on hold to provide and care for Noah.  At least he's being kind and age appropriate to other typical children - even if he has a compulsive splashing desire.  I really loved Luke's instructor, Mr. Kenton, but yesterday was his last day and he is truly talented and naturally great with relating to small children.  Super sad for me as Mr. Kenton was the first stranger Luke ever hugged. While I love to see people pursuing their dreams and seeking career advancement, I am secretly hoping that he comes back. 

So far it's a pretty quiet 1/2 hour for me, one mom so far has made an effort to talk here and there with small talk.   Remarkably it's the staff there that has been exceptional.  All the office managers address me and both my children by name when we arrive and when we leave, never failing to help me with the door and Noah's wheelchair.  Makes me feel like I'm not invisible.   I have a name, Noah has a name, and Luke has a name.  I'm not just that mom with a child in a in wheelchair or even that child that likes to splash.   I know that most people may not understand that - because unless you experience how really minimally you are noticed, acknowledged or given consideration out in public it's a big deal when someone pays you positive and intentional attention. 

If I could just get Luke to quit splashing things would be pretty perfect.  I am thankful I found Co Swim School - in my backyard no less.  Great group of people.

"When life gets you down do you wanna know what you gotta do?  Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming."  Finding Nemo
So keep swimming it is.


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

Sunday, March 22, 2015

Moving a Grain of Sand

Bookmark and Share
Ever sit and watch a tiny ant carry a grain of sand?  So small, and often double their size they dream big.  That one small ant's giant efforts at first seem so insignificant.  A lonely ant with a heavy load on it's back it keeps moving forward, even if it drops the grain of sand it picks it right back up.  It never gets discouraged, it never stops, it never quits.   That little ant is making a difference building a community one grain of sand at a time.  It knows that others depend upon it's action to succeed.  So it carries on.  No matter how hard, or how impossible the task at hand seems.  That one little ant with it's grain of sand.

We all can learn so much from that tiny ant's determination. 

A little over three years ago I wrote a guest blog about a new product that had been developed called Caroline's Cart.  A grocery cart designed for those with disabilities to be able to shop with their caregiver without needing to push both a wheelchair and grocery cart at the same time.

I encouraged as many people as I could find to advocate for this much needed product in stores, print out the campaign packet, ask managers and owners in person, call to follow up.  Remind them the special needs community deserved an opportunity to shop easier, and in turn gain loyal and grateful customers.  Sounded easy right?  Not so much.  It's easy to turn a deaf ear when special needs grocery carts are not in high demand.  We are often a very small population in comparison to the needs of able-bodied shoppers.  Businesses not often willing to assume the investment - even if that meant that those with special needs couldn't comfortably shop at their establishments.   Many managers willingly listened, seemed interested, acted in fact like they'd really consider it, but in the end would say they didn't have the funding to support not even one grocery cart.  

But Caroline's Cart was met with lots of demand from all over the country.   And slowly the cart was integrated into some stores gaining in popularity.   It was working.  The special needs community was being successful in their requests.   And finally after all the asking I had done, I too was able to score my first Caroline's Cart victory.  

Because Noah is so medically fragile we do our best to feed him healthy and organically to give his brain the best chances of development and recovery.  (Not a financially easy thing to do) but nothing about having a special needs child is financially easy.  I focused my efforts on where I most needed the Caroline's Cart.  Whole Foods. 

Within the first two days of putting in my request, I received a lovely message back from the manager saying that they would be honored to obtain a Caroline's Cart to assist those with special needs like Noah.    All those years of my requests being turned down by so many other businesses and finally the first yes!   Costco said no, Walmart said no... but Whole Foods was a glowing yes!
Checking out onions and potatoes
Noah picking out items he wanted in the basket
And they were so fast about ordering keeping me updated along the way so I knew when to expect it's arrival.  And it arrived right on time, a Tuesday afternoon a picture of it sent to my email notifying me of it's arrival.  Inside the doors, sitting next to an apple display - waiting for Noah.   And so we all went to Whole Foods to shop as a family and for the first time in 6 years Noah was able to shop comfortably in a shopping cart.  

Noah spotting his favorite food pouches on the shelf... his expression was golden
I know you can't imagine what those moments in life are like if you don't have a child like Noah, but it's a lot like the feeling of being able to do things just like everyone else can - for special needs effects the entire family unit.   Noah loved the Caroline's Cart.  I did take the Snuggin Go Too (a supportive product we use in some of Noah's pediatric wheelchairs and strollers for additional trunk and head support) it really helped as the Caroline's Cart is designed for those of all ages.   I must also give Caroline's Cart a glowing review for really easy adjustable straps when you are trying to maneuver a child who cannot sit independently while putting them in the cart.  Very nicely done with the strap adjustments.  I was impressed.  

Noah understood what we were doing - we were shopping with him and placing things in the grocery cart.  Just like we do with his little brother.  He laughed and smiled at others.  He looked at produce at a level like we all would.   He was stimulated, interested and engaged in the world around him.  So much different from being confined to your wheelchair being pushed behind a large bulky cart. 

And I finally felt like the little ant in me had finally accomplished what I was supposed to do with my grain of sand.  I made a difference.  Not just for Noah, but all those like him.   And I'm far from done, because I'm going to just pick up another grain of sand and keep going.  This time I have my sights set on the campaign Space for Change.   The UK has hundreds of adequate changing spaces for those with special needs.  We have none.  It's about time we focused some energy on proper changing accommodations so we are not forced to change our children on urine soaked bathroom floors.   And it might take me three years to move my next grain of sand too, but I'll keep marching forward, with the same determination and grit knowing the dream is in sight.


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

Thursday, March 19, 2015

Painting in Blue

Bookmark and Share
Last week, I tried to muster up the courage to try something new for both Noah and Luke.  Sometimes our world feels so small and confined.  Like there isn't anything outside our front door.  We merely exist between these walls in the house, only leaving for therapy and to fetch groceries.   And as hard as it is, and let me tell you it's really hard to sometimes get out in public with Noah, and Luke at the same time, I thought maybe we'd try a free painting class hosted by Whole Foods just up across the street.   I knew I'd need an extra set of hands so I begged Chris to take off work - something he hates doing.  He's loyal to his job, and knows we cannot do without money for him taking a day off.   But he agreed knowing it was important to me to try to offer our boys a different experience. 

I knew it would go one of two ways; Noah would either love it.  Or he would hate it.

And then Luke - my wild card.  Not having a multitude of social opportunities with peers his age, I wasn't sure what he'd think of painting with other children.   Noah's grandmother had bought Noah an adaptive glove with a paintbrush for his last birthday.  We took it with us to see if Noah wanted to use it for painting.  We strapped it on, and he started his whine.  His whine that serves as a warning that he'll have a tantrum if you don't heed his warning of displeasure.  We thought maybe he'd work through it, give him a moment and let him paint some blue on his board and he'd get the hang of it and find it fun.  But the with the whine he added in his extensor tone and arched backwards in protest.   He didn't want to paint.   I was sad, but Chris loaded Noah back up in his wheelchair and just toured the store so I could allow Luke an opportunity to keep painting.  Luke was somewhat interested.  He painted his whole board blue but then fizzled in interest when he had to wait for it to dry until the next step.  When he was finally able to move forward with painting a lady bug on his blue background he decided the all the colors needed to be blended together for his interpretation of what a ladybug should look like.   I stared at Luke's cheddar crackers given to him by the store, still bummed that I tried so hard to line something up for Noah to be included and he wanted no part of it.   Luke ignoring any direction from the art director and continuing to swirl about his random design often getting up to walk around slightly and tried to escape so he too could go shopping, I picked up a brush and painted a ladybug on Noah's board for him, even painting his name on it as if he had completed it himself.  

All the kids finished their paintings and lined up for a group picture.  All except Noah who was touring the store in his wheelchair.   I tried.  And failed.   A wasted a day off for Chris for what I hoped would be this memorable and fun activity.  I wound up pacifying Luke with a cookie to coax him to sit behind Noah's wheelchair, and off we went for the comforts of home. 

I go over a million times in my head how to make things like this work.   Noah's unpredictable, which thereby makes it hard for Luke to do something if Noah doesn't want to be there.   My encouraging mother telling me it was just my first public try at something with them together and that I shouldn't give up that they are both just new to engaging with the world.  And then that awful feeling of failure runs through your veins that you are not doing enough to make things work out well for your children.

It was so wonderful that Whole Foods was willing to include us, I spoke to them several times about Noah in advance and they were so welcoming so I was extra disappointed when he wasn't a bit interested in painting.  It makes me feel hesitant about trying to line up something like this again, knowing that it didn't go well.  And that I need extra hands in the event that Noah wants to leave and Luke wants to stay - or if Luke wants to go and Noah wants to stay... and it's not like we can ride out Noah's tantrum in a store... he'd scream so loud you could hear him in the next state.  What is a mom like me to do... except paint it blue?


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

Friday, March 13, 2015

I'm Hatching

Bookmark and Share
I remember when I was guest speaking last in Dallas, and being at the Sixth Floor Museum, and reading John F. Kennedy's famous quote:

"One person can make a difference, and everyone should try."   

There are days when you think you lack the power to make a difference in your life, let alone the lives of others.   But there is so much truth in those words.  We do have the potential to make a difference.  It may be small, or it may be big.  But an impactful difference nonetheless.  

I've been working on a few ideas lately - well maybe more than a few.  They seem to endlessly flow now when I have a challenge with the special needs journey and think to myself if only something existed to make my life easier and my child's life easier.   And am so excited to tell you all about h-a-t-c-h.

Yes, I'm hatching new ideas.

H-a-t-c-h is a new website where little ideas can make a big difference to kids with special needs.   A platform was built so everyone can solve problems together.  The makers of Leckey and Firefly have made a place where you can submit all these ideas, watch the community support and have a voice on them, ultimately leading to the potential of a fully distributed product that will be life changing for me and for you!

It's pretty simple:  First an idea is born, you craft it into a sketch, submit your ideas through an easy step by step registration process.  And then you've joined a community of inventors that are people just like you and me.  Attempting to build new things to help our children with special needs.   You have options on how you'd like your idea distributed, either publicly or privately and can chose to maintain royalties, share with co-developers, or allow for proceeds to be funded to charity in the event that your idea is picked up and developed. 

I've been playing with it for a few days and just love it.   It's wonderful to dream that I might have the opportunity to come with an life-changing idea for special needs children and families,  but even if I'm not that lucky it's serving as a great creative outlet.  You just never know until you try. 

So head over to H-a-t-c-h and start hatching!  Your ideas could make the world of difference.  And don't forget to check out my sketches and vote for the ones you'd like to see!


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

Tuesday, March 10, 2015

The Question You Mustn’t Ever Ask

Bookmark and Share

ClichĂ© as it sounds don’t we always tend to ask ourselves how much more we can take when life throws us overwhelming unexpected curveballs?   We all do it in our lowest of moments.  Ask God just how much more he thinks we can handle.   However, I’m convinced that is our fatal flaw. We’re merely teasing God – tempting him rather to offer up more than he already has for us to overcome.  I’m certain of it. 

Instead what we should be saying is thank you for the massive challenge you just laid before me, I’m going to conquer it and move forward and never dream of questioning how much more I can handle. 

Not quite yet a week ago I lay in a hotel bed asking God that question – that very question of how much more do you think I can take?… A non-working furnace that had to be replaced in the middle of a snow storm forcing my entire family to retreat to a hotel for warmth since we have a medically fragile child who can’t self-regulate temperature. 

Over the weekend we began to experience our lights dimming and flickering, something we thought was likely directly related to our new furnace potentially drawing too much power.  (Or so we rather hoped).  But to our dismay when our electrical box was opened it was evident what we were dealing with was more severe, scary and of course let’s not forget going to be very expensive.

Melting of components had started to occur, signs that electrical arcing was occurring.  Faulty panel, and had nothing to do with the furnace installation whatsoever.  A problem that had been brewing for sometime given the cobwebs around the damaged parts – essentially a ticking time bomb for our home.  Best case scenerio you lose all power, worse case you’re going to have a massive catastrophic home fire.

There it was - how much more can you take - hand, sealed and delivered.  You need a new electrical box.  I can’t say for a brief moment I didn’t want to be just pissed off at the world.   That meant no power – again.  For hours.  Meaning Noah needed another place to stay… again for hours.  And the price tag, impossible when you’re trying to pay for multiple therapies, out of pocket equipment and medical costs.    I wanted to throw a tantrum bigger than Rumpelstiltskin ever had.   Pound my feet deep into the ground and shout “what for?”  (And at this moment I still kind of want to do that… maybe just a little bit).

But, with time comes perspective and what is important at this very moment is that my family is alive.  We are safe.  We dodged two very potentially dangerous situations in one week.  How lucky can you get that we warned of these brewing problems before something tragic happened?  Blessings?  Yes.  Hidden, but blessings.

Things could have gone tragically wrong, we could have been a family you heard on the news that didn’t escape a fire or suffered the consequences of carbon monoxide poisoning with a severely disabled child.  So even though it feels like I can’t handle much more, the reality is what has been set before me pales in comparison to all that could have happened and didn’t.   I may not like it, but it’s okay.  I must remember the blessings – remember the good, and remain eternally thankful.


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

Back in the Saddle

Bookmark and Share
Noah Riding Lightning
It's been almost a year since Noah rode a horse in hippotherapy.  We were forced into a break when his last therapist resigned and left us without a Saturday spot after years of being on a horse.   It would have been a difficult drive to follow his therapist to her home and there was no covered shelter for Noah which would have proved to be hard with the unpredictable hot and cold weather we often have here.   We were hoping that we'd find another Saturday spot with a new therapist eventually, but all remaining therapists remained Monday through Friday spots only.  And I wasn't sure I could book up Noah's week anymore than I have.  But the little mother voice said it's time for Noah to get back to hippotherapy.  I knew he missed it, as it became something he genuinely loved to do, and it brought about so much more head, neck and trunk control.  So doubling up on therapies during each day is the decision we made to be able to incorporate it back into Noah's routine.

Although I was familiar with the center from previous years of therapy, some things had changed; new carpet and a redecorated lobby with more tables, chairs and even a playhouse barn.  The same - yet different.   A new therapist I had never met.  You have feelings like will she like my child?  Will they believe in him?  Will they love him?  Insecurities that aren't supposed to cross your mind, but somehow always do when you know you have a child as severely disabled and challenged as Noah is.  There was even a new program coordinator since we last did therapy, so everyone was new and unfamiliar.  All we had was Lightning - the horse that Noah had grown a bond with.   The horse I still think sleepwalks - but Noah loves him.  An old friendship those two. 

Noah did his 1/2 hour of therapy.  They were rather in the distance due to another class in the arena.  I couldn't hear Noah over the cries of another child to know if he was doing okay.  Part of me was relieved another child was actually having difficulties.  Although clearly stressful for the mother, she had no idea that her child's discomfort made me feel like I wasn't the only one who has been there.  I did my best to watch Noah from afar, he looked content in the distance.

When the therapist carried Noah back to me and placed him in my arms I braced myself for the worst.  It's so terrible that I've grown to expect the bad news before any good.  I wish I wasn't that way, I think it's become my coping mechanism so that I don't set myself up for heartache and disappointment.  So I was so shocked when the first words she said were "He is such a joy."  Wow.  Good news she loved my little Noah.  Phew.   Nothing bad like boy he can't stop moving or he's so floppy he looks like a disaster on a horse.... all the things you know someone could say to you and didn't. 

Relief in my core and in my heart.  It went well.

We were almost out the door when the new program coordinator followed us out to meet us.  That was really so nice and made me feel like not only were we welcomed again with open arms but that we were genuinely missed.  I loved that feeling.  Like you were somehow going back to a great place of love.   So Noah is in the saddle again, and I hope he has many more wonderful and healing adventures with Lightning to come.


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

Monday, March 9, 2015

Can You Spot What is Special?

Bookmark and Share
My mother and I were casually out shopping together.  The first time we've been able to get together in weeks due to illness.  We splurged on a Starbucks coffee and toured Barnes and Noble - for nothing in particular, just because we could.   We naturally gravitate towards children related sections at just about any place we go.  An internal drive to search out toys and activities for Noah since he's so physically limited and we remain so eager to find things he can play and be entertained with.   It's so easy now to find things for Luke - it's even growing increasingly more fun since Luke is now past the baby stage of toys and moving into early childhood toys - something that to this day proves to be challenging for Noah because most toys geared towards his capabilities are designed sadly for babies. 

My mother remained focused on the Melissa and Doug toys, they have so many neat puzzles and toys that incorporate fine motor skills.  And she stumbled on a new toy that I hadn't seen before called the Melissa and Doug Wooden Vehicles and Traffic Signs.  See if you can spot what I found super cool...

See it?

It's the handicapped parking sign.   Something that most toy manufacturers don't include.  You certainly aren't going to see a superhero in a wheelchair next to Spiderman and Batman.  It's rare, that anything having to do with anything special needs shows up amongst typical toys.  But sure enough there it was handicapped accessible parking sign.  Way to go Melissa and Doug!  Something so small, yet something so BIG!

Do you know how many little boys and girls are going to ask mom and dad what that little sign with the wheelchair means for their vehicles?  It's going to open up conversations and start much needed dialogs with little developing minds and hearts.  (Providing of course that mom and dad provide educated and loving responses to these questions). 

And of course Noah's grandmother bought it for the boys - because inclusion in our house is super important.  And after all we are a family that utilizes handicapped parking spaces.  That is our normal.  So toys that incorporate how our life is for us is very normal and healthy for both our children.   The elephant in the room shouldn't ever be Noah's wheelchair or the needs that go with his diagnosis. 

I would love to see more of these types of toys that don't fail to forget this important part of play and inclusion.  So for now, we're celebrating our tiny handicapped parking sign toy.


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

Thursday, March 5, 2015

You Have Been Touched By Cerebral Palsy

Bookmark and Share
It's March.  The month of Cerebral Palsy Awareness.  You would think that various conditions don't need awareness, but we are so far off as a collective society from tolerance of understanding of not just cerebral palsy but those living with and who love those who have special needs.

I shouldn't have to be in a check out lane in a store and have a cashier ask me "What's wrong with him?" and when I answered with Noah's diagnosis was scolded in front of a line of other people because she believed they made a vaccine for what Noah has and I was an irresponsible parent that caused his illness.

Yes, awareness is certainly needed.

If you've come to read this blog you may not even realize it but your life has been touched by a little boy who has a severe form of Cerebral Palsy.   Noah's life and his story have inevitably had an impact on you.

Whether that means you hold your children tighter because you are thankful that they were spared a life altering affliction, or made you more aware of medical negligence while you are someone you knew was expecting a baby.
Some of you may have learned from Noah's story some of our pain so you knew how to interact with children like ours so you didn't view them as not offering the world any significant value or being too broken to love.

Maybe you found Noah's story because you were looking for comfort and advice and something inspirational because you are a family just like ours and you know the bittersweet journey and wanted to connect with us.

Or you feel led - almost as if divine intervention showed  you the way to Noah's blog because you knew a little boy named Noah needed your prayers and your well wishes, and his family continues to struggle and needs all the support they can find or because you know Miracles do exist and you love following the story of a little boy that has defied all odds and is still here with us today.

It doesn't matter how you found us, or why you are here because your life has been touched by Noah.  A little boy with Cerebral Palsy.

His life matters.  And he has so much to teach the world about being gentle, kind, loving and most of all understanding of things that are simply beyond our control.   His diagnosis isn't contagious, but his laughter and beautiful spirit is.  It takes him less than a handful of seconds to melt your heart with his crystal blue eyes.  He offers you a silent lesson in unconditional love.   He is not to be feared, his wheelchair isn't as scary as it looks, and he yearns to be included just as much as his family caring for him.

We are a voice of Cerebral Palsy.  A condition that effects over 17 million people worldwide.  A number I believe that can be significantly decreased with awareness and more adequate medical professional training to reduce what is happening to so many children - a completely avoidable birth injury for  so many.   I would like to believe there is a reason that our lives were effected by this life-altering tragic set of events causing Noah to have Cerebral Palsy, that somehow God, or whatever you believe in - the powers that be - knew I would be that strong voice to try to make positive changes to ensure that others didn't have to follow in our footsteps.

Without Awareness Nothing Can Change


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

Wednesday, March 4, 2015

When You Think It's Too Cold for Angels To Fly

Bookmark and Share
11am - I notice Noah curling up into a little ball and not moving much. 
I feel his hands - ice.
I feel his feet - ice.

We've always known that Noah has difficulties regulating temperatures in times of cold or heat.   I suspected I had a problem but wasn't quite sure what.  It was a much bigger problem that I originally suspected.  Noah's body was the first clue, because he is so much more sensitive than the rest of the family that we had a heating problem.  I thought it'd be a simple fix just turn up the thermostat higher, and he'd be as good as new in ten minutes.   But the furnace wouldn't click over, it'd light over and over when I demanded it turn on, but the flame would go out each time without blowing any hot air through the house.  

I waited a few hours in denial thinking it was working and I wasn't paying attention.  Trying to layer Noah more until I could achieve the goal of making the house warmer.   It wasn't until I walked into the laundry room and smelled a heat odor - something slightly electrical with a hint of something  burnt.   My gut said find someone to call immediately.  Something is very wrong. 

Found the first HVAC company I could find listed in my city - Cooper's Heating and Cooling, the internet gave them good reviews.   Right before the end of work hours they were kind enough to send someone to my home on an emergency call.  I was relieved.  Even if I was imagining a problem they'd at least confirm for me what was really happening.  They wanted to help, and didn't turn me away at the end of the day.  A diagnostic revealed we had a big problem, fan motor out, heavy rust on heat exchanger with evidence of heat stress on a 20 year old furnace... and the verdict that no homeowner really wants to hear - especially while you're experiencing a snow storm with freezing temperatures...

You need a new furnace

I won't fluff the truth.  I think my heart stopped for at least a second.  I could feel it.  That frog in your throat that prevents you from saying this can't be happening.  Massive dollar signs flashed before my eyes... how can I even possibly stay afloat when all this keeps coming at me?  I did my best to hide my overwhelming feelings from the technician who was very nice and showed me all the problems with a mirrored scope.  I knew this was a big deal.

I also knew that this meant I needed to find some place warm for Noah almost immediately.  He had been cold already for several hours, my mother the only place we could go and she's very sick so we couldn't risk taking Noah there.  So hotel it was.  We picked whatever was the closest to home.  

A sales specialist went over our options with us, there were some neat features like a new quiet electric filter, an advanced Oxidation System with Guardian Air to eliminate several strains of bacteria from the air.  Features we would have loved to been able to incorporate for Noah's health but we knew we just needed heat.  Our life doesn't come with the opportunity to make luxury decisions.  Although RGF Oxidation technology is amazing and I had no idea that something like that even existed, but we knew we just needed the basics - a working furnace above all else.

We signed loan contracts, and flew out the door to get him warm. 

Poor Noah bundled up as the roads were so terrible I couldn't even figure out what lane I was in.  We managed to get there, race him inside and warm him up with a hot shower and a snuggle with dad.  Chris had to take work off today, to stay with the boys in the warm hotel room while I came home to a very cold house and waited on the installation of a new furnace.

Noah wasn't super happy with his accommodations this time.  I think he found the room incredibly small and uneventful.  I believe he was rather spoiled from previous blessings while traveling - he remembers everything.  He likely even remembered that he wasn't on a plane this time - and I'm sure that disappointed him highly.   We could only lay him on the bed which frustrated him he growled and whined in protest - usually the first signal before a big scream and meltdown.

I was so unprepared for this, that I failed to pack things we needed just for an overnight stay.  I was flustered, overwhelmed and trying to push forward to just do what needed to be done.  I lay in bed most of the night listening to cars struggling on the snow covered pavement, listening to Noah stir and evaluate his breathing, Chris was snoring, Luke's feet tucked under my knees for warmth.  And I just prayed, kept telling God that he had finally sent me more than I could handle.  That I just couldn't keep up with his demands anymore.  I prayed he'd send me an Angel - only for comfort because I felt so alone to handle everything.  The blowing heat from a nearby vent dried my slow flowing tears as soon as they fell from the corners of my eyes.  I kept thinking to myself for hours as if I could find a solution on how to fix all of this.  Don't be silly I told myself:

It's too cold for Angels to fly.  

Cooper's Heating arrived promptly as promised today.  They were fast, efficient and more than anything incredibly kind.  I needed that.  I felt so fragile and beat up from life's challenges - and I was very cold. 

And then God reminded me in his own little way that I underestimated his Angels - they do fly in the cold.  In fact they fly so strong, and with so much warmth cloaked in love to assist us with our hotel stay and food for the boys and a way to feel like we'd find a way through this crisis of needing a new furnace.   Blessings much richer than the best cup of hot chocolate when you are down on your luck.

Tonight we are home, we are warm and we are loved.


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

Tuesday, March 3, 2015

Don't Make Me Feel Guilty

Bookmark and Share
I think I've having that kind of life that if something can go wrong then inevitably it's bound to happen to me.  I try to be this shinning ray of positivity... I can make it through this, I'll succeed.  Can't keep us down, have hope, faith... blah blah blah...

Truth be told.  I'm tired.  I'm tired of the endless stares from mothers with typical children who so much won't even look up to say hello to me while they sit at swim class knitting and socializing only with each other.   I'm tired of the countless emails that I have to write each day to Noah's county services, his durable medical equipment provider.  I'm tired of the phone calls I have to make to deal with SSI and Medicaid problems.   I'm tired of trying to fundraise my guts out to help my child which falls flat on any attempts I try, either because I'm not networking well enough or there isn't enough help to go around or another child's tragic story trumps Noah's.   I'm tired of entering Noah in contests to win adaptive equipment knowing he'll lose, but like a moth to a flame I can't help myself because I feel like I'm failing him if I don't at least give him a chance.   I'm tired of the bills I can barely keep up on because I don't know how else to pay for things he needs when insurance says no.  

So, yes sometimes I crave just a bit of kindness that I rarely experience.

Yesterday I got our first cell phone charges since switching to another company.  Should have been no big deal, our contract was bought out so that we could obtain IPhones - for Noah no less for a communication app he needs.  (Every single decision in our lives is for Noah).  But instead of getting one bill, I received two for nearly $250 each.   When I called to inquire as to why, I was told that there was a mistake in setting up our account and that our lines were not merged into one account.  I was asked to stay on hold while they attempted to fix the problem.  I was on hold an hour and seventeen minutes, a customer service representative would occasionally get on the line to say "Stacy, continue holding" and then immediately back on hold without any chance to respond.  Finally, the customer service representative gets on the phone to tell me she can finally transfer me to someone who can help me (when all this time I thought she was and wasn't.)  She transfers me to a customer specialist who says they cannot assist me, that not only will I have two lines but I won't receive any discounts for transferring as promised because of their mistake and they cannot combine them.  I ask to speak to a supervisor who confirms the same, yes a terrible error was made but now I would have to pay the price - a big mistake, one with two large monthly bills for the next two years.  The supervisor telling me there was only one person *maybe* in their ENTIRE company could fix it and that would be the person who set it up originally, even though they had no information of who that individual was.  I told him there had to be more than one person who worked for them that could fix it.  He said no and advised me that I should personally go into an outlet store to see if they could help.  When I explained that was nearly impossible as I had a severely disabled child on the floor, and the only other person who knows how to care for him outside my husband and I was his grandmother and she's ill, and I couldn't just easily get to a store, he snapped at me and said "Don't Make Me Feel Guilty."

In the end, I did have to go to a store, and no it's still not fixed to my knowledge as I was told someone would be in touch to no avail I'm still waiting on a phone call not holding my breath. Screwed over by another set of circumstances and mistakes that were not of my making.

But here's the thing.  When I tell you how difficult my life is, I'm not doing it to make you feel guilty.  I'm doing it because I genuinely want you to understand, to say you know I'm going go out of my way to be kind to you because damn you have it rough and why on earth would I want to further contribute to your massive pain?  Everyone is so far removed from caring anymore about anyone else.   My pain my problem I get it.  I have the memo plastered to my head.   But that doesn't mean that I don't wish that just sometimes someone would want to go out of their way to be kind or nice or gosh even helpful maybe.

And I'm starting to get really mad about it all, I have no one to help me.  There isn't a soul who would dream of helping me shovel my snow, or ask me to coffee or call me and say how are you today?  Because everyone is going about their perfect lives.  While I sit here saying how did this all happen to me?  I'm nearly treading special needs water, and no one cares that I'm drowning, no one even wants to throw me a life jacket.

And PS:  My son lost his second tooth last night and thankfully didn't choke or aspirate on it, but I wasn't here to witness it because I was trying to correct a cell phone bill.... but please don't feel guilty.


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