Thursday, March 5, 2015

You Have Been Touched By Cerebral Palsy

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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

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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

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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.

Sunday, February 22, 2015

The TabletTable

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Noah recently had an opportunity to trial a new product that is still in development called the TabletTable.  It is a platform that sits securely on a flat surface that allows someone who has special needs use their IPad better.   Many children like Noah have difficulties using their IPad even with secure stands because they tend to knock it over or move it while attempting to use the device.  Something that is very frustrating and often times upsetting for the child when they are working so hard to use a device.

When it first arrived I was a bit skeptical of it.  I didn't particularly find it super special on first glance.  It is a simple product.  A platform and a black mat to hold the IPad in place.   I was a tad disappointed that I had to remove Noah's IPad case to insert it.  Noah has a Griffin Survivor Case, which is tricky to remove frequently, but a necessary case because of Noah's high tone and tendency to be rough on it. I also wasn't too sure of the fixed angle of the platform, originally I had hoped that it would be adjustable in height and not fixed.   I would also like a future model that has a way to carry it, or that it will come with a carrying case to transport it easier from place to place.

I knew the only way I'd truly know it's potential would to let Noah play with it.   Immediately Noah was drawn to the fact that he could visually see it well, and that it was stable enough to allow him use his IPad with more accuracy and intention than he's likely ever had before.  He was also very excited about it.   He thought it was rather wonderful. Noah gives the TabletTable 5 stars, and when it debuts will definitely be something that we will be purchasing for him.

TabletTable will be reasonably priced, which I absolutely love for the special needs community.  It comes with modest cost of $49 for the base and $39 for inserts to hold the adaptive device (IPad or Smartphone) in place. 

I do eventually hope that there might be a model that would accommodate cases without needing to remove them to use it, but it's still a must have piece of adaptive equipment for a child that depends on AAC communication and devices for daily use.  

Click to learn more about TabletTable and register to pre-order yours!


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

Friday, February 20, 2015

Raising Compassion: #1000Speak

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February 20, 2015, more than 1,000 bloggers from around the world have pledged to write about compassion.  The movement labeled #1000Speak.  Today I am one of those strong voices with a message about what it means to be compassionate on the special needs journey.

               ღ¸.•´¸.•*´¨) ¸.•*¨ ღ  Compassion ღ¸.•´¸.•*´¨) ¸.•*¨` ღ

is defined as "sympathetic pity and concern for the sufferings or misfortunes of others."  In text compassion feels less powerful than it really is.  It has the power to offer sensitivity, warmth, tenderness and above all else comfort to those fighting heavy battles.  The greatest gift compassion can offer us is genuine love to another human being.

I'd like to think that compassion can grow into something tremendously beautiful.  And once compassion is born in someone it has a tendency to spread, as if pollinating great kindness.  I am raising compassion.  His name is Luke.  He's just shy of his fourth birthday and is a younger sibling to a severely disabled older brother.   Noah, suffered a catastrophic brain injury at birth and at age six cannot walk, talk, crawl, sit, or self-feed.  He is completely dependent upon round the clock care and those around him for help.   Luke at his tender age in his own precious way, recognizes Noah's limitations.  But yearns to interact with his brother just as any siblings would engage with each other.  

He'll try to spoon feed his older brother if I turn my back for a moment, he'll try to soothe him by talking to Noah in a monster voice, and pick out the clothes he thinks his brother would want to wear, often times declaring the clothes I have set out are "the ones Noah doesn't like." He'll put a baseball mitt on his brother's hand and insert the ball as if to simulate they are playing together, and adjust his IPad when Noah needs a new application to entertain himself with.  He holds his hands while his father gives Noah a drink each evening, and often places Noah's hands on his feet because it brings him comfort to feel close to another human being that is dependent upon him for love and care.

When we get back from therapy, he waits patiently by the car door for Noah to be unloaded from his wheelchair, saying over and over "Noah, where are you?"

I am raising a compassionate child. ღ¸.•´¸.•*´¨) ¸.•*¨` ღ

Although the beauty of this has little to do with what I'm instilling through parenting, it has everything to do with a child recognizing at an early age the needs of another human being and a great desire to offer loving assistance, companionship and above all else compassion.   I watch it grow each day, stronger than the day before.  And soon it will spread as he goes out into the world, and shares all the lessons he learned in compassion from his greatest teacher... Noah.

Compassionate people are geniuses in the art of living, more necessary to the dignity, security, and joy of humanity than the discoverers of knowledge." Albert Einstein 


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

Tuesday, February 17, 2015

It's a God Thing Book Giveaway!

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People ask us often ask us why we refer to Noah as a Miracle.  It is then when we explain that not only did Noah come back to us after not breathing or having a heartbeat for the first thirteen minutes of life, but he defied all medical odds that said Noah would have no chance of survival off life-support.  Although Noah's life remains challenging he continues to be a living Miracle.  And we continue to thank God daily for the blessing and gift of his life.

In a new book you can read other stories that will restore your faith in what is possible.  The giveaway will run for one week ending February 24th, 2015.  Winners will be chosen and contacted  via email for shipping information. 

Everyday Holds the Possibility of a Miracle.


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

Saturday, February 14, 2015

Things to Love

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Valentine's Day... a day filled with chocolates, flowers and dinner dates.  Love is in the air.  But for a special needs parent our focus of love is on other things.  Our heart can burst out of our chest and it requires no intervention from Cupid.  
Noah's Valentine's Day Masterpiece
Although Noah was having a moody week and rough nights that resulted ending up at the doctor's office for any ideas on trouble shooting my lack of being able to diagnose his problems,  he has been busy working hard at therapy, and accomplishing new things.  This week he painted a Valentine's Day heart by selecting colors on his Tobii Eye Gaze Communication Device.  His speech therapist placed a paper cut out heart at the bottom of a shoebox and would squirt the colors Noah picked and placed marbles in the box and closed the lid and allowed Noah to hit the box around with both arms.  The end result was a beautiful piece of artwork designed completely by Noah.  I happen to think that it could fetch a small fortune at any art gallery.   Noah is currently entertaining any serious bidder.

He's also been enjoying as much time as we'll allow him on his communication device.  We rather let him navigate what he wants to do.  Sometimes he wants to talk - sometimes like any other child, he simply wants to play.   He doesn't realize that his play is also designed to assist him in furthering his eye gaze communication skills.  It's a win-win for us. 

Noah also successfully licked his very first Valentine lollipop until it was completely gone.  In the past Noah didn't quite have the oral coordination for lollipops and would attempt to bite them - which made me nervous as that could be a choking hazard.  So I took a break for a long while knowing his chompers were strong.  But today, almost as if just magically understood the goal, he sucked it without ever attempting to bite, lick after lick using his tongue appropriately like any typical person would.   Likely the sweetest thing you could ever imagine.  And a huge accomplishment for him.  And boy was he ever so happy about it.
And if I couldn't love this Valentine's Day anymore... Noah and his little brother played ball together.  Real baseball with real gloves and mitts.  Luke tossing a velcro baseball into Noah's little baseball glove and Noah trying to give it back to Luke.  Engaging with each other as if Noah had no limitations.  It was so precious to witness those two together.  They have the strongest bond and are the best of friends.  I thank God for Luke everyday.  Noah needs him.   And their relationship is a beautiful thing to watch. 
Although gifts and cards filled with mushy messages are what first comes to mind when you think of Valentine's Day... I have things so much more to love.


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