Wednesday, October 30, 2013

New Traditions

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This is the first year we finally gave in and realized that trick or treating with a wheelchair with all homes having multiple stairs was too challenging for us - and for Noah.  So we decided to start a new tradition of trick-or-treating early at a venue that was indoors, and without stairs and just stay home on Halloween and pass out candy.  This year we chose Wings Over the Rockies Air & Space Museum.   With Noah's love of airplanes it was a great choice.  A quiet Sunday, just the four of us, and it was really nice.   Easy in - and easy out.  Noah went as a cowboy this year with his horse in tow.  And his little brother was a blue puppy.   There wasn't a significant amount of trick or treat traffic and it was a large area, so it was really comfortable for Noah.   And his eyes just lit up when he seen the jets. 

I'm not sure I could even count the ways that our lives have changed in the last five years.  Part of it has come in this unexpected natural way, other changes I have fought against with my entire soul,  some changes I continue to even pray for.   But there comes a time in your life when you have a child like Noah that you just have to accept no matter how hard it is, that life will never ever be the same as you once knew it.  Imagining how your life should have been - well it's too painful to even really go there on a regular basis.  I won't say I haven't gone there - I've certainly had days where I imagine Noah is playing, running, talking and making mud pies runs through my mind - the child he would have been... the child he should have been.   But for the most part I try to focus on where he'll end up and all that he's capable of doing with lots of work and most importantly lots of love. 

Noah received his Tobii Eye Gaze device last week.  It's going to be a learning curve of course for both him and us while we learn all that it can do, and how to get Noah to effectively communicate.  Noah already seems to really like the sensory guru program, which is game oriented to teach him cause and effect with his eyes.  The main problem is that his little brother is also extremely interested in the new eye gaze machine, it's hard to explain to a 2 year old - that this $25,000 gadget is NOT a toy.  It still is a dream that I have that the companion software called Magic Carpet (another incredible UK product) will someday also be funded by medicaid with a price tag of another $25,000 - allowing both him and his little brother to virtually play sports together - Noah using his eyes, and Luke using his body.  It's breathtaking software.  And when you are a mother living in two different worlds - a special needs world, and the typical child world you long for bridges so your children to play better together.  This is a link of the Sensory Guru oftware: And the Magic Carpet Software:

We are also hoping that Noah's Krabat Pilot Crawler will be approved by Medicaid.  Noah is showing even more ability in wanting to use his trunk and back muscles and we know he so badly would like to crawl.   We've also applied for the opportunity for Noah to trial a UK product.  We are really crossing our fingers and our toes that he is chosen as one of the children to trial the product.   Most of our favorite equipment comes from the UK or is in the UK and we can't yet get our hands on it.  The power wheelchair situation turned rather sour quickly on us.  On the 5th appointment out of 6, it was deemed that Noah was not performing up to the therapist's standards and she told us she would not be recommending Noah to proceed with a power wheelchair.   It's was especially upsetting for Chris, who has taken off each appointment from work without pay to give Noah this opportunity in his life.  And we have been so thankful and blessed that his employer has been accommodating while we tried to work this out for Noah.   But I won't give up, I believe in Noah.  He can drive, we've witnessed him do it several times and he's deserving of this chance.   He just need someone to take a leap of faith and believe in him as well.  And I am going to pray God sends me just that person.

“As long as you have life and breath, believe. Believe for those who cannot. Believe even if you have stopped believing. Believe for the sake of the dead, for love, to keep your heart beating, believe. Never give up, never despair, let no mystery confound you into the conclusion that mystery cannot be yours.” Mark Helprin


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

Friday, October 18, 2013

Life's Smallest Miracles

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As of late, I've been stewing over my frustrations, anger, sadness, and disappointment surrounding the actions or even the lack of actions of others regarding sticky situations that I have no control over.   Today, as God often does, stepped in and gave me a clarifying moment - one of those moments that brings me back to the center of what truly matters - and that is Noah's growth, achievements and the miracles in his life.   The rest is outside noise distracting me from my goal - helping Noah be all that he can be.   I don't have time to right all the wrongs.  I'm busy, that's God's job - and I believe he's good at it.  I trust him and willingly turn it over to him to handle.   And I can take solace in that as a general rule, most people eventually trip at what they simply sweep under the rug. 

For the first time in Noah's life I witnessed something amazing.  While working with his Feldenkrais therapist today during an intensive session, Noah was in a 4-point crawl pose and pushed through his knees using his back muscles in an attempt to extend almost if one were going to try to get up or stand.  His head control was flawless, in one breath-taking moment I was in awe.   My emotions became centered, positivity flowed through every fiber of my being.  That's what matters - Noah and his progress.  His miracle.  He had an amazing day from start to finish.  Beamed at warm water therapy,  giggles in the grocery store, and showing me how strong he was at Feldenkrais therapy.   Today was one of his days to shine.  And little does he know he helped bring me back to my center of gravity.   This child is truly inspiring and I'm not just saying that because he's mine.  If someone really spent time with him - more than just a passing at a park or a store - they'd see that this little blue eyed boy is holding some heavenly secrets and qualities within him.   Children with Special needs are like that.  They light up the dark corners of the world.  Some people see it - while others can't.  But it is real.  The light that shines within them is so bright, so pure, so perfect.  

Noah is also making wonderful progress at his therapy school.  Although we missed several weeks due to illnesses within our family, he is remembering his positive experiences.  Since the fall class has started I haven't seen one gag reflex yet.  The feeling of the class is the right fit for Noah.  He seems to have made connections and feels comfortable.  A lot of work has gone into this improvement, from home visits with his teachers, to us creating a social story to read to Noah daily so he understand his daily routine and events, to planning comfortable spaces within the room, to his own place to just observe and watch children until he himself tells us he's ready and comfortable enough to participate with others.  Before we couldn't even park in the parking lot without the gag and vomiting starting.  We've come such a long way in a short amount of time.

Little miracles continue to happen at home today too, as I was writing this in fact I looked up to see that Noah's little brother Luke found a very small hackey sack basketball in the toy box he picked up and walked it back to Noah, sat down carefully beside him, and gently pried his stiff fingers open to place the hackey sack in his hands then assisted Noah's arm at the elbow to help him lift his arm in order to mimic throwing it.  Noah's hand naturally released it and Luke continued to fetch the hackey sack and repeat the steps.  We've never played in this way with Noah, Luke was not copying something he had seen a parent or even a therapist do.  He naturally knew this is how he'd have to help Noah play.   God sent me such a special soul in Luke - the perfect companion for Noah.  He loves and cares about his big brother so deeply.  They are able to communicate without words.  And to be a mother just watching the innocence and pure love of this interaction is just so overwhelming.  I never take for granted the little things, behind the little things means only greater things are to follow.


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

Friday, October 11, 2013

Expect Anything

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This year it seems has been one difficulty and trial after another.  I seem to catch my breath only to wait for the next disaster in our lives.  I keep telling myself that God must want me to learn lessons in all this, but all I feel that I'm learning is to trust no one and stay away from anyone I come in contact with.   I love openly, I try to find the good in people - maybe in doing so I ignore the warning signs - maybe it makes me more vulnerable and blind to people with less than the best of intentions.  And once again if filters down and affects Noah's life.

Today I discovered that a fundraising organization that helped Noah earlier this year, spent Noah's fundrasing money. I don't know the exact total since there were 3 days of fundraising involved and an online auction.  My guess is the total was around somewhere around $3,000.  The organizer of the fundraiser indicated to me today that it was taken out of her account due to child support issues and it was gone.  I had my suspicions for a while that the money was not there as I asked for therapy equipment to be purchased with unresponsive replies.  While she made the offer to send me payments weekly, until Noah's donations were re-paid, I know in my heart I'll never see that money reimbursed.  I've contacted the organizations directors, and I'm not sure they really know what to do about the situation either and have simply encouraged me to pursue "real world avenues" regarding the situation.  Which to me means exploring legal action as a remedy.  And I'm thinking that should not have to be my responsibility to right every wrong.  So God, I look up and say what is the lesson now.  What exactly are you trying to teach me.  What is the message that I am not hearing?  Because I am tired and worn out.  And if you think you're using me as a tool for others to learn from... well God I'm not sure anyone is listening.

Noah's service dog situation is also less than ideal.  Samson left home earlier this week to be sent to Utah to finish both his puppy training and his skills training.  Our assumption was he was going to a person skilled in training service dogs, but so far it seems he's just been sent from one home to another and is going to a person that has no experience in training service dogs, but that will simply be followed by a trainer.  And I'm feeling like this isn't at all what we signed up for either.  I had thought we'd be getting a highly trained service dog, and instead it feels like we're destined for a house pet.  And I sit here extremely troubled as I continue to hear about multiple clients seeking and winning judgments against the very same agency that Samson is from.

And the thing is I'm doing my research.  I'm doing my best to explore valid organizations and foundations to deal with.  I'm not making any decisions quickly or in haste.  Yet, somehow I wind up realizing that I'm dealing with nothing but wolves in sheep's clothing.  I feel like I have sucker written all over my forehead.  In my quest to search out all the help I can provide Noah with and avenues to make his life better - I seem to be drawing all the negative people to me - like a heat sinking missile.   If I do find red flag I do question it, but seem to buy into everyone's explanation which is just a way of pulling wool over my eyes.  Maybe my radar is off when it comes to judgment in people's character.  Or am I just so desperate for help that I'm easy pray?  I want to believe the world cares about Noah.  I want to believe that no one would want to cause pain or hurt to him or his family.  But that is not the case.  The world is not good and pure.   It feels like the statistics are that out of 10 people only 2 have good intentions and the other 8 well watch out they'll give your life a wild ride.

By the end of all this I'll be able to write a book titled: How Not to be Hoodwinked When You're a Special Needs Parent.  But for right now I feel like I want to bury my head in sand and have a big cry. 


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

Friday, October 4, 2013

Rising Waters

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We survived Colorado's Historic Flood this year.  I had a few days that left me a little worried as the yard started to collect a small pond and water started to seep through a window well.  But then I remembered that God gifted me with a child named Noah and we were going to be just fine.   His little brother thoughtfully brought out the Noah's Ark toy, gave the top half to Noah and then drove or floated the bottom half on the kitchen floor.  It's amazing what children know without an adult speaking of what Noah's Ark was -  they knew it was raining and that meant they needed to play with the Ark.  It's the little things that kind of leave you in awe.  Like they can hear God so much more clearly than I can. 

Noah received his custom Aspen Seat and he loves it - we love it.  Finally for the first time in Noah's life something designed to fit him - perfectly.  It positions him wonderfully and he's so comfortable in it.   It took several appointments to have it molded and fitted correctly, but it was worth all the time invested.  Our hopes are that an Aspen seat will also be made for Noah for a toilet, since he has been unsuccessful in a comfortable fit with the flamingo toilet seat product. 

Noah has also been going to power wheelchair trial appointments.  The first two appointments were a huge success.  Noah drove and understood that he was in control of his actions.   The third appointment was during the 2nd day of our massive rain storm and Noah just really wasn't in to it.  We'll likely have two or three more appointments to make sure we completely know what is the easiest controls for Noah to navigate a power wheelchair and then hopefully one will be ordered for him.  
Noah in trying out a power wheelchair!

The seasons have changed and I've been struggling to get my footing and prepare for fall and the winter ahead.  Noah is now too big for onesies, which is great that he's healthy and growing, but this year I was faced having to buy both children all new clothes.   Noah looks more grown up with just shirts and pants, and seems to be navigating rolling just fine without having his shirt tucked in.  Each day that child gets faster and faster at rolling.  One day I actually lost him and he rolled all the way to the front door, quietly watching me, amused as I panicked thinking someone came into the house and stole him.   He very much likes to hide and thinks it's funny when we cannot locate him immediately. 

Typical change of season style, we've been battling some in-house germs.  This time I was the one to start the domino effect.  So we've been trying hard to get the family well.   It's always extra frustrating when I'm the one who brings home the germ.  I work so hard to give Noah a germ-free environment.   Even harder when the germ spreads to the only outside help we have - Noah's maternal grandmother.   That really complicates getting Noah to his therapy appointments as that means there is no help with Luke.  I imagined it would get easier the older that Luke got, but it's actually proven to be a bit more challenging.  He's a very active, typical toddler and it was so much easier when he was little and I could buckle him in a stroller or carry him in a car seat for all our appointments. 

We are trying an online fundraiser to help with Noah's needs.  If you are in the market for an upcoming holiday gift, consider purchasing a candle to help Noah, 25 percent of sales will go towards helping him with out of pocket costs.

Just go to Go ahead and take a few minutes to check out Gold Canyon's huge selection of fragrances and other products. Gold Canyon has some amazing NEW products out this season plus some new fragrances I am sure you're going to love! Some customer favorites for this season are Pumpkin Patch, Mulled Cider, Autumn Walk, Holiday Wreath, and Cinnamon Pinecones just to name a few. The Woodland Pod Warmer is one my favorites! Click the SHOP bottom next to Noah's Fundraiser under Parties in the middle of the page. 25% of all sales will go to support Noah! Please submit your orders no later than October 31st. Your online order will ship directly to you! Candles make great gifts for friends, family, coworkers, and teachers, so why not give them the very best!!!


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