Saturday, December 31, 2016

One Word For The New Year

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There is something that about a new year that is a sense of starting fresh and a hope for something better to come.  A closure of past problems and complications with renewed faith that tomorrow promises greatness. I stumbled on this book called My One Word by Michael Ashcraft and Rachel Olsen.
Most of us make these lists - perhaps not on paper, or even out loud - but internally in our minds of things we wish to accomplish, change or even things we wish for in the new year.  Personal goals, silent prayers, hopes, dreams and wishes all wrapped up into what we label as New Year's Resolutions.  What we really fail at remembering is that there is so much about our lives that can be out of our control.  While we have power to some extent over our destinies there are things in life that we cannot stop or change, but how we rise to the challenges set before us,  is indeed up to each of us.  How will we process our grief, celebrate our joys, feel the sadness but not so deeply that it paralyzes us, how we make it our missions to leave this world with goodness and light and the legacy that we were once here even so ever briefly.

Disappointment comes all too frequently when we have these expectations and goals in mind without a concrete understanding that we can't just wave a magic wand and fix everything that we wish to.  We've got to work with what we've been given and go from there.  The concept of One Word is really simple.  You pick a word - any word that you hope God will work into your life all year long.

By picking just one word you never have to worry about falling off the New Year's Resolution wagon.  You don't have set yourself up for that inevitable feeling of failure or disappointment.  You get to focus on just one word the entire year.  When you're happy the word is there, when you are sad the word is still there, when you ask God for help that word is still there.  It's there always.  It's one word that won't let you down.  It's one word that you can use for comfort and guidance when all else feels lost. 

Eight years into the special needs journey with Noah, with each new year in some small way I've hoped the New Year would bring about new blessings and miracles for him.  This will be the year he sits, or walks, or self-feeds, or talks... or that I can do more to make that happen - that I'll be able to somehow find the rehabilitation he needs to make those goals possible for him.  But I forget that I'm not in the driver's seat of Noah's life.  And as much as I want those things for him, and all the New Years Resolutions that I attach to those thoughts and feeling can be so destructive to the joy, happiness and the acceptance of what is in front of us.  We're chasing a rabbit we may never reach, and fail to soak in what we have in this moment. 

I don't want to look back with regret and say I spent years chasing a rabbit that I could never catch.  You have to trust and be still and be confident that holding that carrot is good enough.  If the rabbit comes to you it will on it's own.  Don't chase it - just offer the carrot.

Thinking about what my One Word would be was hard.  I already feel like God has given me Hope.  He's given me Faith in the impossible.  He's given me this profound love that I never would have known existed without Noah. H'e given me a miracle.  He's given me humility, peace, joy and strength.  So I sat and reflected on what do I really need this year.   And the word "Relief" came to mind.

I need so much relief from these brick walls I keep hitting in my attempts to help and care for Noah in all the best ways that I know how.  I need relief from all the Medicaid and Waiver denials.  I need relief from the endless appeals hearings.  I need relief from the heavy weight of feeling like I'm failing Noah when it's the system that is.  I need relief from the financial strain of all of Noah's out of pocket medical, therapy and equipment costs. I need relief from idiotic caseworkers and inept government agencies.  I need Relief.  Perhaps more than I've ever needed it.  I've fought for long eight years for this precious human being to make sure all of his needs are met.  I fight harder than most parents are able to fight.  But it doesn't come without consequence.  I know that it is taking it's toll on my health and well-being.  I know that it depleting and draining my own personal battery.  I feel it happening to my body and my soul. I could use a little relief.    So that's my word going into the New Year.  And each time things get hard, I'm going to focus on that word.  The power of intention is real.  You can will so many things in your life to happen if you focus all of positive energy into a certain direction. 

Let's try this one word together.  Let's make this New Year's Resolution simple.  What will your word be?

Here are some options that might be a good fit for your life:


Find that word that speaks to you all year long.

May your New Year's be filled with warmth, camaraderie and kindness that touches the heart of all those you come in contact with.


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

All I Wanted For Christmas

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If you asked Noah, this year it would ring true that all he wanted was his two front teeth.   Seven was the year of six teeth that all were lost in a very short amount of time.  Our score was 5 of 6.  There was one tooth despite our best efforts that was never recovered.  Three of Noah's adult teeth came in very fast - like almost overnight he had new teeth.  The other three oddly have been missing for months.  In true special needs mom style, the Internet became my source of reassurance.  I quickly Googled how long it takes adult teeth to come in, as I perhaps was growing more impatient than Noah.

I was relieved to read that it can often take up to six months for adult teeth to sprout.  Although I should already know better that everything including Noah's teeth happen in "Noah Time."  Christmas morning Noah's three missing little teeth peaked through his gums all at the same time.  Kind of fitting for my Christmas time child.
This was probably the leanest gift giving Christmas that we've given the boys, but neither seemed to notice the quantity of presents to open.  I'm really blessed that the boys don't measure their worth up against other children who are fortunate to be gifted with high end toys, and dozens of gifts from Santa - I suppose that is one of the benefits to homeschooling there is no comparison or competition of other children in relation to themselves.  I didn't even have to worry about either boy even knowing what a Hatchimal was and worried if their peers got one and they didn't.  They are so easy to please, and I love that they light up with small treasures.  I'm really lucky that life hasn't told them that they aren't enough or that you're lesser because there are only a few gifts.  I think we pulled off what the heart of Christmas is about with what was within our means to provide.
Noah and Luke had a Christmas sprinkled with lots of magic.  Santa's visit certainly was a highlight.  Each year Noah get more proficient with unwrapping gifts.  It's all of his coloring book shredding that has really helped.  Although it seems like a messy activity for me to pick up endless little pieces of paper off the floor, it's really a fantastic therapy exercise for Noah and is making him work really hard at using his hands.   Therapy comes in all forms - including a child's way of play.
Noah seems most excited about his season four and five of Night Court DVD's and his adapted switch Monkey from Santa's Little Hackers.  Luke's was his five dollar sled I found on clearance and a giant orca whale that he made as his sled team.  He also like to lay on his new quilt from The Butterfly Fund.  It's amazing how much both of the boys love their homemade quilts.  I kind of figured their novelty would wear off quickly but Luke carries his around and snuggles with his and Noah's is always close by.  Just goes to show you the best gifts are the ones that come with the most love.
Christmas as always just files by in blink of an eye and becomes a memory that you file in your heart and mind.

"Blessed is the season which engages the whole world in a conspiracy of love." -Hamilton Wright Mabie


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

Monday, December 26, 2016

Noah's 8th Birthday

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My whole world can be summed up in three letters...  Son  

My son… who's eyes give me the will to fight back, even when everything goes off-track. The tenderness in your hugs give me a reason to smile, even when our problems pile. Your love is the fuel that keeps me going, and my heart beating. The happiest 8th birthday my sweet boy. 
Noah had a Buddy the Elf themed Birthday party.  Very suiting given he starts watching Christmas movies in July.  He's never been one for much of a break from Christmas.  It brings him pleasure for a big part of the year. We ordered his Elf decorated cheesecake from the same bakery that has been doing his cheesecakes since his first birthday.  I think both the bakery and us feel this sense of mutual celebration each year.  They always do such a sweet and detailed job.  And a crust-less cheesecake just for Noah.   I also splurged on two large balloons for Noah - an elf and a candy cane.  Noah adores balloons and these two are likely as big as he is.  I suppose that is the only good thing about having unnecessary eighteen foot ceilings in a ranch home.

We planned Noah's favorite dinner Chick-Fil-A.  And when Chick-Fil-A heard it was Noah's birthday they were so kind and dinner was accompanied by a Santa Cow.  Noah really enjoyed having dinner side by side with his stuffed cow.  It made him feel very special.  Noah rather purposefully rushed through dinner - because we told him that Santa was coming afterwards to say Happy Birthday.  I could tell Noah couldn't think of anything else the entire day except that Santa was coming.  He adores Santa.  Santa is everything. 
Noah had another commitment on the day he was originally scheduled to see Santa, but was blessed that North Metro Fire & Rescue rescheduled for him and offered to come on his birthday.  I can't even really put into to words how incredible it is to hear those sirens down the street and seeing Santa is arriving and watching the joy not only in Noah's face, but Luke's as well.  I wish I could box that magic - that beautiful magic into a box and just open that feeling up each and every single day.  A reminder of the pure bliss that exists in tiny precious moments.

Santa and his fire crew elves are so special to us.  Since the moment Noah moved into this home, they've always been there for him and our family.  They've given us four years of treasured holiday memories. Their love so genuine, tender and filled with understanding for Noah's unique situation and fragile medical needs.  Santa brought Noah some birthday gifts and remembered his little brother too, which was the ultimate finale to Noah's birthday celebration.  Noah just lights up when he sees Santa.  It's his most cherished yearly experience. 

Eight years has gone by so fast.  Like a blink.  Each night I look at the framed collection of pictures that we thought would be our last pictures of Noah in the NICU as I snuggle with him in our bed after his evening juice.  Noah looks at them often too as I tell him that's "Baby Noah."  And he laughs and arches out of my arms as if he's itching to physically get up and touch those photos.  Those pictures speak to Noah perhaps more than they do us.  It is as if he remembers that exact moment in time and wishes to show us the excitement over the miracle of his life.  His daily exuberance certainly lessens the pain of what once could have been for his life.  He does us very best to remind us of what is important and where to maintain our focus. 

Noah laughed into the late night hours.  I'm not sure where that child gets his energy from or his ability to sleep only a handful of hours. But secretly even though I'm often very exhausted I adore the sound of his laughter and squeals and even the sound of him kicking his side rails of his bed and me needing to flip him over multiple times because he gets stuck, it is just so mushy and joyful to listen to him even if he goes on and on for hours on end.   And tending to him all night in some way makes me feel needed and loved.  He will always need me, and I will always need him.

May year eight be filled with great things to come.


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

Sunday, December 18, 2016

The Splendor of Safe Place Bedding

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There are lots of specialty beds that are now on the market for children with special needs.  Many ranging from high-end, medical grade, residential safety beds that are aesthetically pleasing, to special needs travel beds that offer safe and secure places to sleep while away from home.  Special needs beds are one of the greatest investments of equipment that a family with a child with special needs will need for the care and safety of their child.  And often times a lot of careful consideration must be made in choosing the right bed product. 
 A new travel bed design hit my field of vision this year called Safe Place Bedding.  In pictures I was instantly intrigued with it's simple, yet clever design.  After hunting down a handful of videos about the product I was even further sold on the idea of not only how safe this product was, but how fast and convenient it was to travel with.  Our family has been blessed with invitations to travel worldwide and guest speak about our lives, share our experiences, and participate in product launches but one of the greatest worries we face every time we travel is how we're going to keep Noah safe in a hotel bed when he's away from his Sleep Safe Bed at home.   We've been fortunate that every time we've traveled for special needs engagements our hosts have taken care of that worry for us, but that wouldn't be the case if we were to travel on our own without help and coordination of the sleeping arrangements for Noah.  And it's always hard to be extended an invitation and then have to gently say you have a list of things that you need help with in order to travel. 

 Last year our furnace went out during a snow storm.  Noah can't regulate body temperature and bundling him up in blankets wasn't an option because he's a suffocation risk with pillows and blankets.  Our only option was to retreat to a hotel and ride out this snowstorm until we could have the furnace replaced.  We sought out the nearest hotel we could knowing we didn't have anything that we could take along with us in the moment to keep Noah safe in a hotel bed.  While some hotels have bed rails they can offer, Noah needs a bed that is fully enclosed or he can get trapped.  We always try to push a bed up against a wall and hope that we have a room with a bed that has a headboard so we're only trying to enclose two remaining sides, but that isn't always easy and in some respects a bit nerve wracking when we have to use pillow to fill in the gaps of the sides - knowing that pillows could pose a risk to Noah should he knock them out of place and onto his head.  What is an easy overnight stay at a hotel for a typical family starts out immediately stressful for a special needs family like ourselves just because the bed is the first problem we have to troubleshoot.

When I seen a picture of the Safe Place Bedding - I just knew instantly that it was rather perfect.  Some other competing models I always worried about as they never looked particularly convenient to me, and for some reason I was always worried about metal framing around my child while he was sleeping should it collapse for any reason.  And not to mention price points on bedding also plays a significant factor of consideration.  The Safe Place Bedding is priced modestly at $462.95 - and it comes with everything you need right down to this amazing travel bag that it is stored in.  And this isn't just like a cheap storage bag - this bag feels and looks like luxury luggage. 
 The Safe Place Bedding also holds true to all of it's claims.  It absolutely goes together in under five minutes from start to finish and is so easy that you could skip reading any instructions and know what to do (which is great when you're a special needs parent who doesn't have a lot of time to fiddle with a device to get it going).  Likewise it comes down just as easy and fast.  I like that it encases the child entirely, so it works for children who cannot sit up and roll in bed, from those who could escape from a sleeping situation and need a bed to enclose them during the night.  The bed also can be accessed and opened from either side. It covers all the bases.
And perhaps the detail that I love the most is that it is designed by special needs parents who were aiming to help their own son, and wound up creating something that helps the special needs community.   You will find the very best products on the market are designed by parents who know what their child's needs are and can translate that idea into a workable concept and design.   The passion that the founders Jon and Amara Smith have for this product is evident in investment of their time and commitment to providing a safe yet universally needed product to meet the travel needs of special needs families.

We put up Noah's Safe Place Bedding this weekend for the first time for it's trial run.  Noah enjoyed it so much he didn't want to come out.  It became like a safe cave for him.  He wanted to lay on the floor and watch TV in it, you could tell he felt safe and secure in it.  Never once did it trigger a sensory issue for him,  he had good use of space to move around and still remained secure in it.  It was a breeze to put up and take down, and something that would even be easy for Grandma to set up if Noah needed a sleep over.  And that's huge.  He now has a safe place he can sleep in besides being home bound.  I feel this huge sense of relief, as when you have a child like Noah that requires a specialized hospital bed or safety bed of some kind to sleep in, and you worry should you ever have to leave home for any reason, a vacation, an overnight stay at friends or family, or to retreat to a hotel during an emergency situation that you have a bed you can take with you.  It is something every special needs parent needs who has a child that requires specialized bedding and will inevitably use at some point in time.  And I love that the Smith's have aimed to keep their product within financial reach for families and offer resources of funding suggestions on their website.
Noah had a really good time in it.  And I can tell that he would be not only safe but very comfortable in it if we left home and it was placed on top of a hotel bed.  It hits all my check marks of a product that easy to fall in love with.  Perhaps the only thing I would have wanted on my wish list would be a waterproof removable and washable pad for the bottom, but is something that I easily could find at a retail store to place at the bottom myself - but I always love it when additional accessories roll out later on too.

Definitely put this on your list of things you need for your child with special needs.  Even if you don't anticipate traveling you never know when you'd need something like this in case of a rainy day or an emergency.  To learn more about how you can order yours click here.



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

Tuesday, December 13, 2016

I'll Hold Your Hands & Pray

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Sibling bonding is a really unique dynamic when you have one child that is severely disabled and another child that is typical.  While all sibling relationships have  hierarchical and reciprocal elements, that looks a bit differently in a special needs family dynamic.  The attachment theory very much becomes applicable between siblings, and you quickly find that a very emotional and physical development happens that has nothing at all to do with the encouragement and push from either parent for them to love, like and get along.

Although Noah is the older sibling, he has always been the one to seek comfort from Luke.  It's a beautiful kind of role reversal and a flip flop of birth order almost to compensate for the physical challenges that Noah possesses.  Luke has assumed the role of protector, best friends, advisor, entertainer, and caregiver in training.  He has mastered the art of paying close attention to Noah's laughter triggers, his anger responses, his expressions, and his vocal sounds in order to become a fast and accurate interpreter of all of Noah's needs.  Sometimes he's quicker then even I am to just "know" what Noah needs in the moment.
The older he gets the more tenderness and attention to detail I see.  When he thinks I'm busy or needing to tend to making dinner or doing laundry Luke will quietly get on the floor with Noah, thinking I'm completely unaware, and plays with him.  I can catch him whispering secrets into Noah's ear and Noah giggling with delight, he'll repeat phrases that he knows will make Noah laugh, he'll mimic Noah intentionally so that he feels the same and not different.  I can't help but take great pause and watch unnoticed from a distance at this beautiful thing they do together.  It's so pure, innocent and oh so heavenly.

Of course there are still very apparent episodes of sibling rivalry.  Luke will have moments where he is possessive of toys he claims as only his, and likewise Noah does the same.  They exhibit this by purposefully trying to keep each other toys away from the other.   And while those moments don't generally last for a significant amount of time, they intentionally do it to each other in a way as to establish dominance over the other - really like a checks and balance of their relationship.  I rarely intervene as it never escalates to a point of parental involvement and I let the two of them work out their minor disagreements which in the end always winds up with one or the other conceding and extending an invitation of play.

By far one of my most favorite things to watch is when Luke goes over to Noah in his feeding chair before each meal and holds both of his hands together.  And says "Thank you Lord for the food we're about to receive.  Amen."  And then goes and find his place at the table to eat.  To watch a little brother hold his big brother's hands together so he can pray... well that kind of makes a mom's heart reach places that you didn't even know existed.
There is so much grace to sweet moments that happen in our household.  It's an extraordinary relationship that Noah and Luke have, and I hope and pray that their bond will be forever and lasting well into adulthood.  That Noah will never ever be alone and Luke forever and always be there to hold his brother's hands and help him pray.

He's such a great little sidekick for Noah.  Even as I write this, Luke is singing a goodnight song to Noah and telling him not to party too long.

Being a Brother is Better than Being a Superhero. 


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

Monday, December 12, 2016

Where We Are Now

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My blog posts on Noah's blog have slowed down a bit over the last few months.  There are a handful of reasons for this.  I've taken on even more guest blogger commitments, I've immersed myself in advocacy endeavors, I'm homeschooling, and sometimes there is so much to say that it's hard to put it all into proper words so I purposefully avoid doing so altogether.  Silence is sometimes comforting.  It offers you no advice, no criticism, no false expectation of support, no artificial forms of caring, or unfulfilled promises or gestures.
The holidays - oh gosh the holiday season.  It sneaks up on me every year even though I start preparing in September and am often in full bloom by the first of October in rescue attempts to aid other special needs parents during the holiday season through various personal projects. I still can't catch my breath no matter how hard I try to prepare for all that it entails.  And Noah's birthday - always a complicated mixture of delight and emotion mixed in.  It's hard to believe we've been celebrating our Miracle eight years this year.  So much has happened in those eight years that I feel like it could have been spread over ten lifetimes.  But for better or for worse it has brought us to where we are now.  

Things continue to be challenging obtaining Noah's needs.  He is met with more denials than approvals.  I have four current pending appeals hearings lined up in the new year for Noah.   One: A VocalID denial because the State doesn't think it's necessary that Noah have a personalized voice.  Two: Mygo Leckey Tour Base denial because the State thinks it is a caregiver convenience to convert Noah's feeder chair to a transit ready wheelchair and they suggest I simply ask them for a much more expensive Hoyer Lift instead (which mind you had a completely different purpose).  Three: CarpetSaver denial because Noah's Waiver doesn't know the difference between a floor protective cover product that is machine wash and dry friendly and real actual carpet that is permanently attached to the floor.   Four: A Wedge Pillow from Bed, Bath & Beyond, because his Waiver is certain there is an insurance code for it through EPSDT Medicaid, when no such code exists for a typical item you find a local retail store and has no Medicaid contract or vendor for.  Noah also has other requests in that have gone for weeks and months with no determination or decision and the State says they have no deadline that they can take as much time as they wish.  One has to wonder if I'm supposed to interpret that as years at this rate. 

Yet, families like ours seem to be really at the mercy of a "mother may I system," that is designed largely to conserve funding or pocket it (who really knows without true transparency in the form of public audits) what happens to this money that is supposed to be set aside to help children with disabilities.  It is exhausting however to continually have to pursue benefits that should be covered for Noah in the form of continual appeals through an Administrative Law Judge.  Thankfully, the judicial system is one that I made a career out of prior to Noah's birth and an arena that I'm familiar with.  For most parents they feel defeated and lost before they've even begun.  For them fighting it through an appeal isn't always a realistic option as the process is intimidating, and in most cases fruitless given the State can reverse any ruling by an Administrative Judge with a simple filing of an Exception to Initial Decision which simply renders the appellate process moot.   And if you look back on any December blog post in the last eight years you'll find this time of year is quite popular for denials and appeals in Noah's direction.  End of year funding conservation perhaps?  One always wonders, but there is a curious pattern to my December posts.

This is the first year I'm essentially winging the holiday without a hand up.  Meaning there were no foundations or grants or charities that I haven't trail blazed through the last eight years to carry us into this year's Christmas season.  I look at Noah's Santa stash and think will it all be okay?  Naturally shopping for Noah is complicated when special needs toys cost just as much as a medical equipment these days - and you have to tenderly balance out shopping in newborn to 36 months of age isles at the toy store.  Noah cognitively is eight, even if his body hasn't been physically able to catch up with his mind - he still craves what a typical eight year old does.  His tastes in movies are age appropriate, likewise his desires in toys are the also yearning to be age appropriate.  And making the holiday season work for Noah takes a whole lot of creativity and would require more financial resources than we happen to have at our finger tips.  For most families this can spiral them into a host of various forms of depression and despair at the holiday season.  And I've always known that so I work towards helping others in order to escape perhaps that realization for own set of circumstances.  It's always been my philosophy that if you are so engulfed in helping others that your soul has little time to dwell on such things. 

But as hard as the challenges continue to be, there are still moments of pure bliss and joy that comes along with special needs parenting.  Those moments are also often hard to put into words unless you walk a similar journey.  The things that give me great pause and fill my heart are often the little things that most simply take for granted.  And I eat up those blissful moments as the fuel I need to help Noah in all the ways I can.  He's just simply a magical human being and I continue to feel so blessed to be his mother.


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

Sunday, November 13, 2016

Feeling the Feejays!

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As a special needs parent, I occasionally hunt for items that I wish existed.  In my mind I dream up the perfect item that would solve all of Noah's problems.  And sometimes I get lucky and find that it does in fact exist.  It's not a surprise that Noah isn't fond of wearing typical shoes.  While he can tolerate Piedro orthopedic shoes (quoted at nearly $500) while he is using gait trainers and standers, he has difficulties loving shoes while we're out in public.  Winter is coming.  Slippers fall right off of his skinny, small feet.  Socks alone are too thin to keep him toasty, and wool ones make him crazy

I think I was googling Sherpa lining... when I stumbled on Feejays.  Yes, internet searches, while overly time consuming in a special needs parent's day, can prove to be worth while -

Feejays are sweatpants with super cozy, ultra plush, sherpa fabric lined feet!  The feet can also be pulled back if you'd like to set your little toes free and put on shoes to cruise outside.  For children with special needs who aren't a fan of shoes, or like Noah who also have difficulties regulating body temperature and need extra warm clothing Feejays are a must! 

I have been so impressed with them.  They wash and dry beautifully and maintain their softness.  In fact, I'm so envious of Noah's comfort in Feejays that I want a pair for each of us!  I envision us all lounging together in our Feejays sipping hot chocolate as we watch the snow fall this winter.

Feejays would make an excellent Christmas gift.  Feejays has extended an amazing offer to all of Noah's Miracle readers by offering a discount code through December 10th.  Just use "SMILE", as the discount code at checkout and it will provide 15% off your entire order! 

This is one item you'll be super excited about having under the Christmas tree this year. 
It is one of those gifts that is perfect for everyone.  I can't wait to grow Noah's collection of Feejays!

To place your order click here!


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

Tuesday, November 1, 2016

Neighborly Nightmares & Meeting Switch Witch

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Noah's 7th Halloween down in the books of special needs family history.   I feel like Noah is my constant teacher.  But instead of just giving me the answers when I'm wrong he forces me to learn via trial and error.  After six years of trying to put Noah in Halloween costumes (minimal at that), Noah just couldn't get past that dreaded sensory gag reflex that led to uncontrollable vomiting.  Year seven - I thought I'm simply torturing this poor little boy all in the name of a silly holiday ritual in which kids gather too much sugar by holding a beggar bag at someone's front door.

This year, we were blessed with a foundation who provided a Rolling Buddy costume for Noah.  A really cool airplane that attached to his wheelchair.  Noah only has one wheelchair with arm rests (because he wraps around his arms - even with arm blockers and hooks himself).  I had a base but no seat on an old model Noah had outgrown.  It took many months but I at least got a seat for an old frame.  Although it has Noah's name embroidered in the back he's acting as if it doesn't belong to him.  I suspect that the harness is not comfortable and is a sensory trigger for him - and the seat came too small - although he fits on it, the seat is make-shift at best.  The chair of Noah's dreams?  I think not.  He rejected it and thereby rejecting the only wheelchair ride he has that could even attempt to accommodate his airplane wheelchair costume.
Yet a certain sadness loomed in Noah's eyes.  An understanding of being left behind.  A look that will tug on every single heart string any mother has.  Chris and I looked at each other trying to figure out a plan.  What do we do?  We risk him gagging and being on sensory overload if we leave the house.  But create a painful childhood memory for him if we were to leave him behind.  So, the decision was made Noah would simply walk around the block with us, without a costume in the wheelchair he is currently most comfortable being in.  We took two Halloween bags, Luke was so on point one would have thought we coached him into making sure Noah was also presented with a piece of candy at each home.  Even if a neighbor thought or assumed perhaps Noah didn't need a treat, Luke was quick to say I need one for Noah.   Perhaps those words coming from an adult may have been perceived as rudeness, but out of the mouth of babes and a devoted little brother - was remarkable.

Noah full of smiles and laughter - perhaps more so as he realized Luke had his back, found his way to being fully capable of handling each time someone opened their door to greet him.  Granted, that was done with generally some significant distance as the homes in our area are full of a multitude of stairs just to get to a front door.  But we still made it work.  Noah was doing so well in fact that we went around the entire block.  The darkness and comfortable temperature likely helped minimize and defuse sensory overloads.  I must admit my neighbors go all out for Halloween - I had no idea I feel like I live in a box and haven't been able to join the masses due to Noah's needs.  One home had a set up that I swear was like watching poltergeists march back and forth in their upstairs bedroom windows.  Cool, freaky and totally effective in giving the oldest of adults goosebumps.  Who knew that such decorations even existed!  I can't say that I wasn't intrigued enough to spend an extra amount of time in their driveway watching their fake spirits pace back and forth. 

I'm not sure what it is with that big bad motion detector spider that jumps out - but that darn thing made me jump; it made Luke tear up; and Noah laugh hysterically at the fact that his little brother almost peed his pants.  Was a typical brotherly moment.

Chris wasn't exempt from his own neighborly nightmare - a man without a face standing in the middle of the street to scare a passerby. His movements so classic horror movie that really it was truly disturbing on every level.  We both wanted a way from it (him/her) quickly.  The boys likely less affected than us - ironically.  But mom and dad got the heebie jebbies.  In fact thinking about it makes me want to crawl under my covers.

The boys came home with generous amounts of candy.  Although Luke can eat candy, Noah watches with tremendous envy.  We scooped up Luke's entire loot and passed him only a mini bag of M&M's and put the rest on top of the refrigerator - out of sight out of mind.  Noah's face showed a sign of relief.  He didn't feel as if he was doing without.  And then the Switch Witch was put on my field of vision... finally like this giant light bulb went off.  The Switch Witch could come and take all the candy away and leave Noah and Luke both mutual non-edible gifts.  That is like special needs parenting perfection.

Both children on equal ground, both children get workable gifts, mom even maybe avoids an unnecessary trip to the dentist... dad scores because he can donate the candy to his work - it's like a win win for everyone!  I just might give the Switch Witch as much of an even playing field as the Tooth Fairy. 

I'm just glad we made it work.  I'm glad that after all these years that Noah didn't get sick or have to suffer through a Halloween.  That perhaps allowing Noah to be just who he is - all 365 days of the year is what he needs - and that's okay.  There is nothing saying that our Halloweens have to resemble anything "typical."  Being the norm is over-rated anyway.

-A bit of special needs unpredictability - now that's how we roll.

Looking for other creative candy donation options to dispose of candy for your non-oral eater?  Check out Candy for Heroes


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

Sunday, October 30, 2016

Follow Your Own Recipe

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Noah's specialized diet results in time consuming endeavors in the kitchen.  Nearly eight years later Noah still cannot eat anything else other than purees, puddings, cheesecakes and meltables.  And because of his high tone and athetoid movements Noah is on the move all day - burning lots of calories.  He's on his own individualized exercise program!

Noah's treating providers have always encouraged high calorie foods, healthy fats, no preservatives, no artificial dyes, and organic to give his brain optimal opportunity to keep his mind and body as healthy as possible.  So my chef skills are sometimes on hyper-drive and I'm always looking for yummy things that Noah would enjoy.

Now that we're into fall, all those warm and cozy meals are on my field of vision.  One day I woke up wanting a culinary challenge - (really because I don't have enough challenges to my day right?) In hindsight I was likely looking for a diversion to the outside stress that comes along with special needs parenting.

What's something that I could master?  Julia Child's Beef Bourguignon came to mind.  So I googled it.  I spent way too much time peeling pearled onions and braising beef... but I did it anyway.   It was okay, I mean I followed the recipe - it turned out - but it wasn't like the choir of angels I thought I'd hear singing when I took my first bite.  Noah ate it, he liked it just fine, but I could tell by his expression that it was just mediocre in his world.  Luke did his best to fish out the mushrooms and anything that could be remotely identifiable as a vegetable.  Chris - easy to please had seconds because he's just that kind of cool guy. 

Yet, even though I did everything right in the recipe I expected so much more, and I felt in some way incredibly let down by Ms. Julia Child. 

I decided to give it a second go.  But this time I decided to follow my own recipe.  I took elements from Julia's recipe.  I still braised my beef, I ditched those time consuming pearled onions, and instead I added celery, homegrown gold beets from our garden, garlic, less carrots, garlic, only 2 sliced mushrooms, I kept the bacon but changed Julia's ratio of organic red wine to beef broth, increased Julia's recommendation of flour and threw in a bay leaf and said you're all mine! 

And then angels sang at the dinner table. 

Now you're all probably out there thinking why on earth have I followed along about Noah's mommy discussing her attempts at Julia Child's Beef Bourguignon?  But really I do have a point here, I promise. 

Sometimes we're always itching to follow in someone else's "personal best" that we fail to consider that we each have our own personal best within us.  Why isn't it okay for us to follow our own recipes in life?  And have them be the best for us?  The same lessons carry over onto much of the special needs parenting journey.

Why must we measure our children against another child's personal best?  Against the recipe of milestone timelines that therapists dish out?  Compete for the same success one family found doing a particular therapy or treatment?  Allow others to tell us how our recipe should look like? I swear if I have another therapist tell how they think I should be putting my typical child in public school to offer him the experiences of a "normal" childhood implying because he has a severely disabled older brother that we've somehow short-changed his life - or insinuate that because I don't take Noah to a all day camp where they push him for 8 hours a day, cause him to cry and be in pain all in the name of "therapy" I'm libel to explode in verbal direction that I'm sure they won't appreciate.   

Our recipe can look like our own.  And that's so awesome.  In fact it's more than awesome, because we're being authentically true to ourselves and to our own children's needs.  Our form of preferred therapy for Noah can look different from traditional forms or methods, or philosophies about parenting or teaching both a typical child and a profoundly disabled child alongside each other can look different than sending our children off to public school. My recipe and your recipe can look similar or different, but the fact that they aren't exact is a wonderful and beautiful thing.  


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

Monday, October 10, 2016

A Fall From Nowhere

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A little more than forty-eight hours ago, Chris and I went downstairs to try to troubleshoot a new storage plan for Noah's adaptive equipment.  Cumbersome and bulky there is no really easy way to just tuck in a corner until it is needed in Noah's day.  After less than a five minute conversation about it, we turned around to see this little grey spot on our blond tiled floor.  As we approached it was pretty evident what it was - a baby mouse only days old, with fur but it's eyes still closed.  I thought for sure it was deceased - it wasn't moving, still and quiet it just laid there.  Until I got closer and realized it was breathing. 

My heart sank.  What on earth was I going to do with an infant abandoned mouse?  And I knew where there is one there is usually more. A thousand things ran through my mind.  Mice can carry viruses  - and what do I do with a breathing baby mouse?  In the moment I asked Chris to get a Tupperware dish and poke holes in it.  Deep down knew I only had one real option for someone like me - I had to try to save it. 

There was absolutely no trace of any other mice in the basement.  Because Noah is so medically fragile our home is pretty spotless - or at least I break my back trying to make it that way for him.  There were no droppings - no signs of anything.  It was as if he fell from the middle of nowhere - and so he did.  Upon dragging out a ladder and evaluating the top of the wall, we found a small hole in a gas line that led to the fireplace, a likely source of entry and another deceased litter mate on the ledge.  This little mouse had fallen eight feet to the hard tiled ground and survived against all odds.  A miracle in itself - I convinced myself that was a sign that this mouse had a bigger destiny - and that without a doubt it was meant to survive.

A rodent - but one with a purpose. 

Is there such a thing?  My mind said there was.

A tremendous detour in my day I rushed to the pet store, quickly threw down $25 that we needed for weekly groceries, for a critter keeper, puppy formula and paint brushes for feeding, I came home to save the day and accepted the adoption of the orphaned mouse challenge.  I figured the first twenty-four hours were critical.  If I could make it past that, then he'd be home free.  My goal:  To nurse it to independence and set it free.   I could do this.  After all I'm an expert caregiver.  Internet research said feed it every two hours, use a paint brush dipped in formula, rub its belly with a q-tip for digestion... not too bad.  And I can't deny it - I added extra tender loving strokes so it didn't feel lonely and knew that it was in some way cared about.

Although I was slightly worried as I thought maybe it might have a bloody nose, I decided it had just scratched itself accidentally and was minor.  It was very active, healthy, thriving and strong.  A fighter.  Feeds were going really well, and I faithfully woke up in the middle of the night - even in between Noah's needs in the night, which further contributed to my level of already existing sleep deprivation - just for the mouse.   Last night the mouse seemed a little bit more lethargic - but I assumed it was tired and sleeping, still active but slightly more time to get it excited.  The morning still active I gave it breakfast and then without warning it started to gasp, and have labored breathing.  Immediately I was fearful that I had done something wrong - had it aspirated while feeding? And then it just passed away in my hands - just like that.  It was over.

And then this incredibly crushing feeling of failure.  And an immediate question of purpose.  If the mouse had survived falling eight feet, only to pass away two days later, then why did God allow him to survive the fall in the first place?  I told it's little lifeless body how sorry I was.  I ached for it to come back to life. A silly mouse - that I would never want for a pet - yet I was mourning the loss or trying to foster and care for this tiny little life - less than an inch big.  his head no bigger than a fingernail.  A small helpless, blind life.  Gone.

So what is the lesson in all this?  Besides outing me as an overly sensitive and compassionate, if the end result was that it didn't make it - then why did it survive that fall anyway? 

I'm still guarding Luke and Noah's childhood.  As they both inherited their mother's sensitive nature and the overwhelming feelings of the disclosure of death is too much for either of them to process at this age for who they are.  And if I can spare their childhood just a pinch longer from true understanding of it all, then I've bought them a little more time of not to have to worry about thinking about mortality.  That lesson comes all too fast for all of us anyway.  The mouse went to be with it's family is how I explained why it suddenly disappeared from the top of the refrigerator.  A completely acceptable thing for Luke.  He only asked once and it was fine - out of sight out of mind.   Noah looked a few times for it, and then that was fine too.  And as fast as the mouse came into the picture, he left. 

Because of the circumstances I didn't have time for a proper burial - yes I did actually think about it.  I think I felt sorry for myself for most of the day in fact - that looming sense of failure - and because I really put in the effort and thought I'd be able to save it and release it.  Although in reality I worried about that too wondering how it would find shelter in time before it snowed... and perhaps I wouldn't have been able to let go of something so easily that I essentially raised... till let's say spring of next year... who am I really kidding?

I kept peeking in on it kind of hoping that death was not a final diagnosis, wishing for a resurrection - a chance for me to try again - a chance for me to do better.   Issues that I know still haunt me from Noah's birth - a redo - if only I can go back in time I tell myself - it would all be so different.  I could have saved Noah from this fate and birthed at a different hospital, insisted he not go over his due date, insist on an instant c-section not just a 13 hour, natural delivery delay, without a notarized birth plan for hospital staff to hide behind as an excuse for not meeting the standard of care - and the mouse perhaps I could have too also influenced the final outcome. 

But that's the recipe to how we carry guilt.  We carry guilt because we convince ourselves we are somehow to blame for an adverse outcome.  Even when we had nothing at all to do with the end result and it was ultimately out of our hands.

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

Monday, October 3, 2016

Speechless: More Than a One Hit Wonder

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Many of those in the special needs community (although were already rooting for Speechless) were waiting to see if the show would have ongoing and amazing content after the much anticipated first episode aired.  I must say I was as pleased with the second episode as I was the first.  Maybe even more so, as there are a variety of subjects, situations and discussions that are centered around a special needs family dynamic. 

In episode two, the viewer got a preview into what I like to call the "special needs mom push back," caregiver topics such as toileting assistance, financial strain homestead issues, and the independent thinking and personality that many assume who are non-verbal don't have, and the hardest one - trying to let go - "when he is your entire world."

The classic mom push back was hilarious to watch.  While most of us are not privileged enough to have the opportunity to lecture the school principal on how the "push back" actually works, the scene provide a sense of authenticity to the real show down that really exists and occurs quite frequently when you are advocating for your child with a disability.  The dad, whom viewers may think is along for the ride, with his head flipping backwards and arms crossed, simply signals that he knows that his wife's inner bitch has been unleashed and he just stands back to watch the show  - a show he fully supports. 

Two parts although still light-hearted in their presentation still had a way of pulling on those familiar heartstrings.  When JJ's new aide, Kenneth, is about to embark on a solo journey for the day with him, and his mother is having a hard time trusting and letting go.  (And not without undue concern as the aide temporarily drives off without him) - and knowing that you at some point have to trust another stranger and human being with the most precious and protected person - that sweet child that has indeed become your entire world.  Certainly as Noah gets older, my mind has not gone there a time or two.  For the most part I don't go there often because those feelings of ever being able to trust someone else to care for Noah with the same safety, tenderness and care that I do - feels unlikely and impossible at the moment.  But, that doesn't mean that I don't remain open for the right person to walk into his life one day who might come close to fitting my long list of caregiver requirements.

An equally touching yet complicated moment was when JJ's mother, Maya, walked in on a conversation between JJ and his aide in the bathroom.  A moment that gave her some hope - not total trust - but a glimmer of hope that perhaps she indeed had made a good decision for her son.  A patient and understanding aide, Kenneth, does a superior job of reassuring JJ that he can assist with his toileting needs and would be there to help him. Fair to say that pretty much is on every special needs parent's wishlist - someone that will be there for their child who genuinely wants to assist them and give them every possible feeling of dignity that they can with what is required in 24/7 daily living needs, personal hygiene and care.

Perhaps one of the most comical parts were when the DiMeo family approached their neighbors with a realistic picture of how they'd be voted least likely to keep up with their property.   While that part of the episode may have come across snooty, careless, or unconcerned, to the average viewer - to a special needs family it's representative of the financial constraints that really limit a family to have the resources to keep up with home repairs, remodels, and time constraints like household tasks like mowing the lawn, gardening, and snow shoveling.  And in the end the perception is from neighbors is that we are stupid, lazy, or in the words of JJ's little sister, Dylan, "idiots."

Speechless hit another second episode home run - one in which has scored the show an entire season pick-up by the network.  And special needs families everywhere are celebrating.   What disability topic would you most like Speechless to cover this season?


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

Tuesday, September 27, 2016

Burnt Pancakes Becomes the Theme

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Our alpha dog has decided that in course of the last nine weeks that she's found the need to be distraught in the night.  Thankfully, this hasn't manifested into whines, cries or barks, but she exhibits anxiety panic-like attacks that can last for hours on end with panting and excessive banging, scratching at pens or crates, or if we let her free to roam she pretends she is a race car without a finish line.  With what little Noah does sleep, she disrupts any potential quality of sleep he gets and makes him stir.  The vet says this is common in older dogs that start to lose their vision - super, I think to myself as I calmly rush to the nearest holistic vet store and buy anti-anxiety drops and CBD treats in an effort to naturally cool her jets.  And overtired me thought a quick shower before a telephone conference and Noah's speech therapy sounded grand after even less sleep that Noah has accustomed me to. And by quick, like seven minutes tops. 

Sad, that special needs parents like myself relish even a quick shower as a treat in our day.  Things were going great, I managed not to get any soap in my eyes, and had a chance to squeegee the water off the glass doors even - until Luke rounded the corner and said slyly... "see what I did."  And I'm thinking oh yeah, like you lined up all your match box cars in a row, or colored a Dory picture in your room... "I turned on the oven" he whispers.  "I did it."

I sprint to kitchen like a cheetah, dripping with nothing more than a towel and a t-shirt, a sense of relief overcomes me when I see nothing at all on the stove's surface, until I look up and realize the smoke plume from the microwave above it.  The microwave still is counting down with over fifteen minutes left making me wonder how long this child actually set it for.  I yank it open fearful of what he decided to nuke, and find six silver dollar pancakes on a severely melted green plastic plate.  The stench quickly takes over the entire house and the smoke so incredible it's like a fog storm rolled through your living room.

All the mischievous and somewhat dangerous ideas that Noah was never able to accomplish.  Things that never crossed my mind all the naughty things that a child of age five would think to do in the seven peaceful moments his sleep deprived mother used for a shower.  All I can think of is the potential plastic fume toxins that could reach Noah - medically fragile Noah who already has enough problems to contend with.  I block Noah's door like that evil monster in the movie Poltergeist so no one can enter his bedroom until the smoke cleared and the windows relieved some of the burnt evidence, all while thinking this is the perfect theme to how my weeks have been going.  Burnt pancakes is really the perfect analogy.

I think I somehow thought the older Noah got the easier it would become for me to navigate his needs better.  Truth be told it feels much harder now. When he was a baby I could put a band-aid on the equipment needs with rigged baby strollers and toys, now that he's almost eight everything is customized, and complicated and costs thousands of dollars. And everything he needs to make his life better is met with such incredible resistance from the very programs promised and designed to help children with disabilities.  And I get up each day and fight - that is literally what I'm doing.  I'm fighting with Medicaid with waivers, with vendors with DME's - I feel like I'm fighting with the world to hear me and to help Noah.

And I have all these continual challenges that I can seem to find ways around.  Medicaid approved a new WinSlate AAC device for Noah, but since his last AAC device nearly three years ago, Medicaid has put in a mounting cap of $468.68, on the average AAC mounts cost between $1,400-$1,700 and Noah needs more than one.  Not all are universal and we are struggling wit the fact he currently has no table top mount, or manual wheelchair mount.  The only one that was approved was for his power wheelchair, and that is being repaired and altered and he can't even use it full time.  The same problem complication is really true with Noah's orthotic shoes - he needs Piedro shoes where the AFO is really built into the shoe, but because Medicaid's reimbursement rate is so low, vendors have decided they will not cover them, nor allow me to pay the difference because legally they cannot bill a family for an otherwise Medicaid covered benefit - even if Medicaid will not fund the entire purchase price.  So that leaves Noah with an appointment to be measured for shoes Thursday - but us having to fund customized shoes for him that will be around $300.  The hemorrhaging of money isn't a good time - at some point it really comes down to it simply not being possible.  So when a doctor asks me why Noah's middle toes arch or his foot bones are distorting I can kindly reply because Medicaid won't help him and we don't have the money for the hundreds it will cost out of pocket for a product that he can wear comfortably and that is not a sensory challenge for him.

The State denied Noah's VocalID - a customized voice that would be a blend of his little brother's voice and his vocalizations for Noah's AAC device, I'm appealing, but I've lost track now of how many appeals I'm on - I think it's seven, but I'm so tired to think that it could be higher.  And while my batting average for Noah is really good, the State always comes in after a favorable ruling and files an Exception to Initial Decision and wipes out the appellate process. Leaving us back to square one after all of my fighting efforts.  While I think I have a good chance at over turning the VocalID denial, I expect the State will still block me.  I had asked Noah's waiver for PPod accessories for his PPod.  Earlier this year the State simply anticipated I might ask for them and entered a denial without me even submitting a request with required paperwork, citing SSA 6505, which prohibits the purchase of any adapted equipment where payment is sent directly out of the country for the item.  The PPod at that time existed solely in the UK.  Since that time Drive Medical who bought SOS in January of 2015, decided to distribute and sell the product in the US.  A move that happened in July of this year.  However they are primarily allowing an online vendor to distribute it, and the costs are a bit more challenging ironically than they would have been with a direct UK purchase.  Knowing that the State could no longer hide behind SSA 6505, I put in a formal written request for it.  I was home free for a half an hour when I got an email saying it had been approved and was being sent to billing for Noah, until I received another email saying they had made a mistake and were sending it on to the State panel for further determination and review.   I temporarily celebrated during that half hour, but I kind of already knew the other shoe was about to drop.  As really sad as it is, I've come to expect the bad news, and rarely know what to do with myself these days if anything is easy or uncomplicated.

And in my spare time, I do silly things like take on the idea that I can change federally funded programs into recognizing that families like ours need more help with TANF, SNAP, and family Medicaid, and that new IRS guidelines should be an influencing factor in policy making, or that I somehow can get Medicaid Caps eliminated for certain funding categories or find better justice for the disabled community and all these families who feel so defeated and don't have the fight drive that I have. I don't know what it is about my personality that just can't walk away from it all - I mean clearly I have my hands full just with Noah's needs that never come easy, for me to think I can take on the world almost feels like insanity. I think it just comes from deep down where I just don't want another parent to walk in my footsteps and have to fight the same battles I have had to or have shed the same tears in the name of helping their child.  I want to spare everyone from this bottomless feeling where hope gets lost.  I don't know that I can save anyone though from this pain, I want to, it's not easy to wake up every morning and know for every email you read that it's a problem you have to sort for your child, or to have the weight of the world on your shoulders to find a way to financially fund something he needs that isn't as simple as going to Target for.

So burnt pancakes it is...


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