Sunday, April 13, 2014

Talking About the Miracle

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Last night was the Sharing Beautiful Photography Gallery by Steve Stanton at Two Rivers Craft Coffee Company, where Noah was one of the many children photographed for a book collection and photography gallery.   I went by myself, leaving the boys at home due to one still eating dinner and the other recovering from a minor cold.   I am sure it would have been so much more fun to have Noah there with me.   It is always different when you talk about the miracle of his survival, without seeing him in real life.   It's almost like this speech that is burned on my tongue... thirteen minutes without breathing or a heartbeat... global brain damage (the part that makes everyone's heart sink and their facial expressions cringe)...  the discussion of taking him from life support, being talked into that DNR against our better judgment and then later doctors trying to convince us to starve him to death... and his will to fight.  
Sharing Beautiful the Book

That was Noah's start, but not his present and not his ending.   I delicately dance around the questions of how hard things are now for Noah and even us as a family.  Carefully choosing my words so that I put all the wonderful things ahead of the hardships.  In fact, I rarely if ever discuss the hardships when first meeting someone new.  Or if I do, I attempt to make them sound like they really aren't that bad.  (Even if some days things are exceptionally rough). 
Small Feet Leave the Biggest Footprints in Your Heart

Gallery Pictures
Why not you might wonder?  Well it's all too much for strangers to absorb in the first initial introduction to Noah's story.  In the end people want a happy ending, and the happy ending for us is that Noah lived.  And we treasure his life more than the physical abilities that were stolen from him at birth.   Being overly forthcoming about all that goes along with life with a special needs child is a bit mind blowing for most.   And I know that I have the power to inspire and encourage hope and faith in all things possible.  People need that.  And they need to feel, understand and see the miracle of life before all that other complicated stuff like therapies, equipment, financial strain, the medical malpractice lawsuit, court judgments and appeals for all these various things, Medicaid, SSI, equipment vendors, and all the other circumstances that sit before me each day.  

People need to know the value of Noah's life means more than all that other stuff that I have to deal with.  It's often uncommon when strangers learning of Noah's story become personally invested or involved with our family long-term, but the very few that do, learn along the way about all the other hard stuff... or those curious usually seek out and read his blog and learn about many of the challenges we face as a family with a child who has special needs.  And all the others, well I hope they walk away with a memory of a little boy that they either seen or heard about and remember Everyday Holds the Possibility of a Miracle.

I never grow tired of sharing Noah's story.  His Miracle Story.  He lived.   That's the best part of the journey.  The most important part. 

If you get a chance to check out Noah and all these other amazing children at Two Rivers Craft Coffee Company, in Arvada, Colorado,  the portraits will be up for two months. 

As I sipped on a vanilla latte decorated with a blooming cream heart I thought how wonderful it was to connect with others, and share the story behind the child with piercing beautiful eyes in black and white photos.  It was such a honor for Noah to be included in such a diverse and beautifully done project. 


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

Monday, April 7, 2014

An Open Letter to Medicaid

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Upon arriving home I had the pleasure of opening a letter from Medicaid indicating they had obtained a Court Order for an extension of time as they decided to appeal the Judge's decision allowing Noah to have the Krabat Pilot Crawling device, along with an a request for continuance to obtain the Court transcript of the first hearing that resulted in a Judge granting Noah the crawler.   Mad is an understatement.   A Judge awards Noah a crawler device and they're so spiteful they continue to fight me.   Unbelievable.  They now have a continuance until April 21st to obtain the transcript, then I assume another hearing which will likely take place in another one-two months.  By the time this is resolved we'll be at this over a year - not to mention the ordering time involved from the DME (Durable Medical Equipment Provider) if I can finally see my way clear of Medicaid.

For those who may not be up to speed about our fight for the crawler since October of 2013, you can read about it here

Should I be surprised?  Probably not, after all they are spending so much money fighting me in order to block me from obtaining this for Noah that in then end they could have funded two or three of them.  Really that's how you chose to use tax payer dollars?  Truly.   Yep, Truly.    So Medicaid this is my open letter to you! 

Dear Medicaid,

Blast you to hell! 
May the gates of paradise never open to you.
May the lamb of God stir his hoof through the roof of heaven and kick you in the arse down to hell.
The crows' curse on you.
May you be eaten by an awful itch!
Pissmires and spiders be in your bed.
Curse of the seven snotty orphans on you.
May you find the bees but miss the honey!
May the curse of Mary Malone and her nine blind illegitimate children chase you so far over the Hills of Damnation that the Lord himself can't find you with a telescope.
May you leave without returning.
May you melt off the earth like snow off the ditch!

(Thank you Ireland for all you taught me) 

Noah's Mom

Bring it on Medicaid I'm ready for round two. 

On the other complicated homefront,  our van was rear-ended at a drive-thru.   The lady behind us said she was digging for money in her purse and got confused and hit the gas instead of the break.   To say the least the family is okay, the van has a crushed rear end and some scrapes and scratches.   She couldn't produce an insurance card, but gave us her name and address and the name of who she said insures her, and we took down her license plate number just in case.  We made the decision to go through our insurance and have them pursue a refund on our deductible in subrogation to cut down on the process, the need for an appraiser and to streamline things if we need a rental while it's being fixed.  We rather blindly picked an auto body shop that was the closest to home that had the best reviews online.  And when I spoke to them today they were so kind and reassuring, so I'm hopeful this will all work out with time.

Ideally, we know our van is on limited days but we will likely need it for trade in value someday to get Noah a handicapped accessible van.  They start as many know, used for around $35,000.   Even with a trade in, it's something we can't do at this time, so we continue to limp along with the van we have.  

And I was reminded we weren't in the land of kindness anymore when I went to order Luke's birthday cake at a local bakery and was confronted by a lady who tried to move Noah's wheelchair because she felt he was in the way,  and then we realized not only was she rude in person but also in courtesy as she blocked my van so I couldn't load Noah's wheelchair. 

We also were notified that Noah's hippotherapist is leaving the riding center and they have no plans on replacing her.  Which leaves Noah without a Saturday spot.  Noah has been offered a spot to do hippotherapy at this therapist's home, but we are worried it will be a longer drive, and no indoor arena.  We also have concerns if there would be enough volunteers to assist Noah with hippotherapy at a private residence.  We hope to take a tour to see if it would work at her home, but it's all just complicated timing for us to make a decision so fast on what to do next.  In fact I feel a bit overwhelmed just thinking about it. 

Praying for a better week ahead, was a rough first week back home.


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

Our Goodbye to Ireland: Carrickfergus Castle

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Carrickfergus Castle
We only had less than 24 hours left in Ireland, and you can't travel all that way and not see a castle.  Ironically the day we went it was a FREE day!   But we arrived a half an hour before closing.  Which gave us just enough time to quickly tour.  The gift shop had already closed!  Which was probably a good thing so there was no temptation.

Carrickfergus is everything you'd expect a castle to be.  It was majestic and full of glory.  Propped on the hillside and at the water's edge.  It gave you that kind of feeling as if you were entering a magic kingdom, through arched doors.   The interior of the castle was different than I expected it to be.  From the exterior it looks like this cold hard fortress.  The inside felt like you walked into a little village with different buildings within it.  Amazingly it was very handicapped friendly, a large steep ramp allowed us to get Noah to the top both ways.   That was really magnificent that he could experience everything with us on this trip.  Noah was not left out of anything.   The wind was a bit chilly up there, and against the water's edge you could see ships in the distance.   It was rather neat picturing yourself in a spot that contained so much history.  

We toured quickly so that we could see the entire castle before it closed, had we have had more time I certainly would have lingered and soaked up the ambiance.  It felt like we were clicking off pictures wildly trying to see everything in record time.  They were excavating when we were there.  The Centre for Archaeological Fieldwork, QUB have been uncovering some of the 19th century military aspects of the castle.  In particular they've traced the length of tunnel where ordnance was off-loaded from ships and taken into the castle for storage.  It was rather fascinating to watch the excavation and the unearthing of history.   Sure beats anything you'll learn about in a text book!   What a wonderful moment in time for us as a family.  I never dreamed we'd have a chance to experience anything remotely close to this after Noah's diagnosis.  I never thought any of this would have been in our future.

I think that's what makes the entire experience so much more important and appreciated.  I know the value of what we did, I know how significant it was to venture so far from home, on a wing and a prayer - literally.   We blindly trusted this was meant to be and jumped in with both feet.   And there we were, at a castle in Ireland. 

I reached out touching a wall, as if I was leaving my fingerprints to say I was once here.  Remember me, I begged.  Remember how much courage we had to find our way so far from home.  We were writing our own beautiful history.   Noah loved the castle.  Luke likewise was rather attached to the idea after watching Mike the Knight on CBeebies at the hotel.

Noah seemed fascinated with the water,  and in awe of the large cannons that lined the perimeter of the water's edge. He also really loved that the sun peaked out just over the top of the castle's edge as the sun was going down.  That was rather a beautiful moment.  The sun felt so close as if you could just reach out and touch it.  I'm so glad we had an opportunity to see Carrickfergus Castle.  It made the journey feel complete.  The grand finale.

We left the castle to pack our bags and get ready for the early morning flight home.   Our beautiful adventure had come to a close.   We left the hotel at 6am in the following morning, with a last breakfast of delightful pastries.  Noah did amazing on all flights and only had some difficulties on the plane home from London to Denver.  It was a bumpy ride, with a very nerve-wracking landing that caused the plane to tip both directions.  Noah in true sensory style threw up four times.   Can't say I didn't feel like joining him.   But we were on the ground and home.  Noah's wheelchair suffered some damage to the handles on the final flight home, but so far British Airways have been amazing about that too.   And now we have so many good memories that will last a life time.

The last wonderful goodies from Ireland

We all had a little trouble adjusting to being home.  The boys were on Ireland time for an entire week, and Luke caught a cold the morning we left for home, which he later shared with Noah.   And we kind of felt like we left pieces of our heart back in Ireland.  But we gained and grew so much as a family and feel so very blessed.


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

Sunday, April 6, 2014

Titanic Belfast

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We were able to visit the Titanic Museum in Belfast while we were there.  The Museum was within walking distance from the hotel but the weather was rainy that morning so a taxi was arranged to help us.

The Musesum has nine galleries:
Gallery 1: Boomtown Belfast
Where you walk through the Harland & Wolff shipyard gates and learn about why Belfast was the perfect location to build the biggest ship in the world
Gallery 2: The Arrol Gantry & Shipyard Ride
You get to immerse yourself in the construction of the Titanic as you take your seat and fly through the busy shipyard.  (Yes we held Noah and he was able to experience this ride!)
Gallery 3: The Launch
Brought to life by innovative gazing you get to see the Titanic as the ship would have looked sitting on the slipways waiting to hit the water for the first time.
Gallery 4: The Fit-Out
You get to experience life on the ship from first class rooms to the engine room
Gallery 5:  The Maiden Voyage
You get to view the stories of the crew and passengers; learn about their stories and their lives on board the Titanic.
Gallery 6:  The Sinking
Reliving those final hours of the tragic sinking of Titanic's story through a dramatic sensory experience.
Gallery 7:  The Aftermath
You get to experience how the world reacted to the news of the Titanic sinking through interactive exhibits to investigate what happened to those on board.
Gallery 8:  Myths and Legends:
You get to discover fact from fiction with interactive touch screen galleries
Gallery 9:  The Titanic Beneath
Take a journey to the bottom of the ocean and experience where Professor Ballard famously discovered the Titanic in 1985.

And you can even see the cranes as they existed then named Samson and Goliath.  They have been repainted through the years but they are still standing tall and proud.
Samson & Goliath

The day we went to the museum they had a police conference there, so there was a lot of Belfast security.  Kind of made you feel like you were coming on an extra special day.  We even were introduced to a politician while we were there, (terrible the name escapes me); but she was lovely and everyone told me she was very high up, so I know it was a privilege that we met her and that she took the time to speak to us.

I've always had a fascination with the Titanic, which I largely contributed to what I learned in school and the Molly Brown House  Museum in Denver, Colorado.  I loved Molly's story.   And so it was neat to actually be where it all started.  I loved how handicapped friendly the museum was, spacious elevators, wide exhibits, and even a ride that Noah could do, we just had to sit him next to his daddy while a bar went over his legs.  Chris just put his arm around Noah for support and off we went.  Was a neat ride.  Made you kind of feel like you were literally flying through time.   Noah certainly enjoyed it.  That ride definitely gets high points for children who especially crave vestibular motion.

Noah also was really in love with this exhibit that took you through all the levels and rooms of the Titanic in a 3D like room.  It gave you the sensation like you were really moving and experiencing a real life event.   Interesting how the brain can pull tricks like that on you.  But I can understand why Noah loved it because it gave you the sensation of movement, and he likely felt like he was moving just while sitting in his wheelchair.

They also had a screen where you could see the Titanic leaving the dock with all its passengers.  All those joyous souls that had no idea the fate that lay ahead.  But that's true for so many of us.  Noah's birth felt a lot like that.  The excitement of waiting and preparing for a baby.  The showers, the decorating of the nursery, the picking of a name... then you go into a hospital expecting to bring home this bundle of joy and live happily ever after.   I certainly didn't see the iceberg ahead for Noah and I either.

We got to see what different cabins looked like and granted first class looked like a dream come true, even to this day - I thought to myself that if I had to I could have bunked in lower class, but I suppose I've learned you don't have to have the best of everything to be happy.

We even took one of those souvenir photos, with Chris as the Captain of our family.  We figured what the heck, why not have a one of those staged little photographs to bring back. 

They have a large theater there, much like the IMAX experience that we have here in the States.  Noah liked watching things on a large screen and it took you through the discovery of the Titanic at the bottom of the ocean.  You rather picture it still lying there on the ocean floor, quiet and still. We really enjoyed the Titanic Museum as a family and I'd highly recommend it as a must see place if you visit Belfast.

After our tour of the Titanic Museum we met one of our new friends for lunch called Pizza Express They have really wonderful pizza and pastas.  I really liked the pizza in Ireland, it has a very thin crust, but so much more scrumptious varieties and combinations than we have here at your traditional pizza chains.  Chris I think much prefers the greasy kind of pizza, which these were not.  But I think Belfast pizza is way more friendly for most waistlines.  I had a pasta dish, with added sausage which was a bit spicy but very good.   Luke had garlic cheese noodles, and Noah he was all about his chocolate sundae.  And of course I couldn't resist indulging in a little coffee and treat after lunch a little dolcetti with a lemon meringue torta.  If only they'd deliver all the way to the States I'd like to order a Piadinas right this moment!

The Pizza  Express Menu
Noah enjoying lunch at Pizza Express
Luke with a temporary change of hats at Pizza Express

After lunch we headed to our last adventure of Ireland -Carrickfergus Castle!


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

Noah's Ark: The Petting Zoo in Ireland

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After our conference and meetings at Leckey it was time for play!   We picked up the children from the hotels and made the short journey to The Ark (Open Farm)!  Yes, imagine how excited I was when I realized that Noah was going to get to visit The Ark - and not only visit The Ark, but walk at The Ark for the first time - especially given his namesake.  
Noah & Family at The Ark Petting Zoo, Ireland

We arrived and looked around briefly.  Luke latched on to a little John Deer child's tractor.  He loved it and wasn't about to get off for well, anything except for a playground.  We suited Noah up in the Upsee so he could walk around and experience animals at his level.   Noah was up and ready to go in less than five minutes and we walked through the barns, seeing pigs, sheep, chickens...  they let Noah have bread to feed sheep, a bottle to feed a pigmy goat, pellets to feed other animals.  Noah for the first time in his life got to stand and feed animals. 

Noah feeding a baby goat a bottle at The Ark Petting Zoo

They even brought out a white rabbit and Noah opened his little hands to reach out and pet the rabbit all while standing in his Upsee.  Luke brought up the rear in his John Deer, having way too much fun to get off and explore animals.  He left that all up to his big brother to enjoy his Ark.   It is a lovely petting zoo, tops anything I've ever seen here in the States.  It is so well done, and so pretty.   I wish it were closer to home we'd be regular visitors. 
Noah Petting a Rabbit for the first time
Noah standing to touch sheep
Noah was all smiles, he was having the time of his life.  We walked around and socialized with all the animals.  I think I seen the biggest pig of my life.  And I mean big - like horse big.   They have a really beautiful playground and on just the edge of it there were a patch of daffodils.  They picked a handful and let Noah hold them.  He put them in his hands and held on tight as we walked on together.   He beamed with pride.  He was so proud of himself I could feel it with his small steps that we took together.   I tried not to get teary, after all pictures were being taken and the last thing needed was a weepy mom, but the daffodils well that was about the part that put me into a waterfall, so I tried to refocus on Luke who was running happily up and down the playground to get my mind off the swelling joy that causes those mommy tears.
Noah at

We watched his little brother come down a slide - rather fast and plop on his bum only to get up and do it all over again, and play on the swing.  There was such freedom in that moment.  No wheelchair to move, no playground that wasn't handicapped accessible that we couldn't wheel Noah up to.  We were side by side.  

After Noah had his fun in the Upsee at The Ark, we took a brief break so I could do an interview about our experiences in the Upsee.  None of us knew that recorded interviews were in the plan, so looking back on the videos you kind of kick yourself like why didn't I bother to do my hair and make up that day and care about what I was wearing?  But in hindsight I guess it doesn't matter in the larger picture because what was recorded was real and raw, and that's all any of us can really hope to be.   Unscripted and allowing your heart to speak in the moment.   There is so much worth in just being honest and genuine, and maybe other parents could relate to me on a simple level - so much more so than if I had been groomed and dolled up for the event.  I am what I am, just as Noah is who he is.  And I keep telling my children you don't have to be perfect to radiate something beautiful.

And I have a lot of respect for Leckey for doing everything the way that they did.  No one was paid, no one was coached, no one was made promises, nothing was staged.  We all just existed as we were experiencing these wonderful things together.  At the heart of it all Leckey knew what mattered - family participation and being able to provide this gift to so many around the world.   The media attention came as a surprise to all of us, none of us had any idea that the Upsee would draw in such an audience.  At best I thought well maybe 500 people might check it out total when it first went up for sale.  I never thought we'd all find ourselves attached to news articles and news stories on television.   I expected it to be a lot like the GoTo Seat, a really amazing product that is so needed in our special needs community that would simply spread by word of mouth slowly.  And even with all the attention, the entire Leckey team, and even Debby Elnatan herself, remain so humble.  I admire their unwavering focus which is on bettering the lives of others.  Firefly products are going to make so many dreams come true.   Leckey really deserves all this publicity, they are moving mountains for children with special needs. 

Although I can honestly tell you there was no way to top The Ark, we did come close to celebrating all the joy at a restaurant called Deane's  Now you all know I loved Flame, but Deane's I think was my ultimate favorite!   Maybe it was the two French Martini's with Raspberry and Pinneapple... or the Crab with celeric mayo on toast... or the Royal Fish Pie... or Vanilla Panna Cotta with Pistaciso Caramel... or the after dinner coffee with cute biscuit...
French Martini

The best coffee I have ever tasted!  With a Biscuit!

Crab with celeric mayo on toast
Luke asleep after dinner

Noah was as equally in love with Deane's, and Luke well he had his fish and chips with mushy peas and fell asleep right there at dinner.   We kept ordering Noah scoop after scoop of ice cream - five total scoops that child ate after dinner! And our hosts were so lovely they indulged Noah in all his scoops.   I get all teary just writing this because they loved my Noah. And not just a fake, I tolerate you, special needs disability kind of thing.  Like they really loved my Noah.  They really loved all the children who were there.  They meant every bit of kindness, every loving gesture, every beautiful word.   And it felt so good.  We were so overdue for some unconditional love from strangers.  You all know I write about how rough our lives can be.  And for a moment as a family, we were as close to heaven on earth as you can get.  The inventor of the Upsee held and lifted a sleepy Luke for me,  held Noah's hand, spoke to him like a real person who understood everything.  I was living a dream.   It all felt like we had found family.   We may not have been able to buy a lot of souvenirs, but what we did bring back with us was the love we experienced.  And that feeling is something money can't buy.

I found unconditional love in Ireland and new friendships that mean the world to me. 


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

Thursday, April 3, 2014

The Firefly Garden: Where Good Things Are Growing!

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You may have heard tid bits about something coming called the Firefly Garden.  What is the Firefly Garden you ask?  It's a place were love and hope grows.  The Firefly Garden is opening in about thirty days and will provide an amazing resource for parents who have children of special needs.   A platform designed to give you a voice, to provide you with inspiration, and a place to come when you need just a little help.

Top Secret things are currently growing in the garden.   But rest assured you will be just as excited to see them all sprout in the upcoming months as you are the GoTo Seat and Upsee.   The Firefly Team and those at Leckey have some amazing ideas to light up family participation on a whole new level than has ever existed before!

We spent a morning meeting with the creative minds behind the scenes, those who work tirelessly each day to bring new ideas that will be life changing to children with special needs.  We were able to see how an idea grew into a concept design, and how a concept design was modified, changed and improved upon in order to produce a final product. 

Where do the ideas start you might wonder?  Well they start with parents who need something for everyday life that doesn't yet exist for their child with special needs.  Leckey is there listening, creating demo products and conducting valuable research on how to bring ideas to life!

Our meetings took place in a room that was beautifully designed as the most beautiful garden you could imagine.  Lights, trees, little bears, little make believe fireflies in jars... butterflies on the ceiling and lots of green leaves.  And the most beautiful Firefly background logo, with the gentle sound of crickets and outdoor life.   You could feel the magic.   Most importantly it was sensory heaven for the children who attended.  All the children were so content and happy.  Face painting, balloons, laughter, warmth, love and hope in a room full of blossoming ideas. 
Firefly Screen

Firefly Meeting Room
Noah's balloons painted on his hand.  He enjoyed getting his first painting!

We had delicate sandwiches for lunch, hot teas and coffee, and pastries that beat anything you could ever find in the US.   The elevator to the building broke the day of our firefly fun.   The Leckey team was mortified hosting families with children in wheelchairs.  But there was lots of help there to carry wheelchairs up and down the stairs.  And they likely didn't realize that those types of challenges we have to deal with on a daily basis here in the States... stairs, no ramps, elevators that quit working, handicapped buttons that no longer work to open doors.  One time I remember having to go up the escalator with a wheelchair.  So, in the larger scheme of things, it wasn't terrible in our eyes at all.  At least we had a whole ton of loving hands to help us out, something we don't have back home.  We're on our own unless a stranger passing by takes pity on us and offers to lend us a helping hand!   And besides it is kind of like any big event, there has to be something that doesn't go as expected to add some extra fun and give you something you can look back at and laugh about later!   Remember when as the story follows...

I didn't want to leave the garden.  Felt so wonderful there.  Good memories happened in that garden that we'll carry with us forever as a family and Noah was so happy.

One of the most delightful things about a garden is the anticipation it provides

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

Wednesday, April 2, 2014

Visiting the Leckey Factory: A Labor of Love

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The Leckey Factory
We awakened early and had a quick bite of breakfast; some rasher (how the Irish reference bacon),  bangers (which are Irish sausages),  black and white pudding (which is a soft-textured sausage made from the cooked and congealed blood of pigs or cattle. The blood is mixed with fillers like pork, beef, fat, oatmeal, bread, potato or barley to create a familiar sausage constancy).  The white pudding is much the same as the black without the blood.  Irish brown bread, and Boxty which is like an Irish pancake, sometimes the breakfasts would include mushrooms and a steamed tomato.   Chris would often ask the kitchen for cereal, Weetabix or Coco-cereal.   Noah would always get strawberry yogurt.   And Luke - well he was rather attached to the hard boiled eggs and chocolate croissants.   Now doesn't that just sound like a wonderful way to start your morning? 
Our breakfast
Cereal and Morning Goodies

I haven't been able to eat or handle the idea of sausage since my pregnancy with Luke, but surprisingly I adored Irish Bangers, the casings and meat are very soft a bit like the texture of bologna or braunschweiger brands in the States.  I did have a bit of trouble with the black pudding.  I believe in trying everything at least once, sometimes more than once to give things a proper chance.  The smell was a little different than what I am used to.  I can't say it was really all that bad, just something I simply wasn't accustomed to eating.  I would however try it again, so the verdict is really out if it's something I could learn to love or not. 

After we had eaten we arrived in the lobby of the hotel where a taxi took us to Lisburn to the Leckey Factory.  It was maybe a twenty minute drive and I loved passing hillsides full of green and farm houses.  All the taxi drivers were so warm and kind.  They would chat with us the entire way, making sure we were having a delightful time.   You'd see sometimes those making driving mistakes, and each driver wouldn't hold a grudge.  They'd roll down their windows and wish each other good day.  Same thing with drivers in general, they just roll down windows and ask for directions or ask how each other are doing.    The exact opposite of what you'd find here in the US where road rage is rampant and where no one tolerates each other to make an honest driving mistake without being aggressive.  We certainly wouldn't be willing to roll down our windows to chat with each other.  Reminded me literally of those please pass the Grey Poupon Commercials.

Once we arrived at the factory we were greeted by so many employees from Leckey.  They all eagerly awaited our arrival and were truly excited to have us as their guests.   We all put our belongings in a room and joined Mr. James Leckey for a presentation in the entrance of the factory.   Mr. Leckey is everything you'd hope to find in a person working to help children with special needs.  A tender, huge heart for those in need.  A man of great character doing his best to change lives for the better.  He lives and breathes his motto of "it's not just what we make, it's what we make possible." I loved how genuine Mr. Leckey and his entire team were.  They are working in all the right directions for all the right reasons.  They want to help, they want to be there to make a difference in the lives of anyone who needs their services and equipment.  They want to help the special needs community in so many beautiful ways.  

I enjoyed Mr. Leckey's enthusiasm and his unwavering sense of hope.  His encouragement in all things possible.  His presentation was lovely and delivered new ideas that will be life changing for children like Noah.  A true motivator and believer in inspiring positive change.  Leckey is a team of almost 150 employees creating and designing quality products that we desperately need and so many children continue to benefit from these blossoming ideas. 

It then came for the part that all of us had eagerly been waiting for.  The tour of the entire factory! 

I know you're thinking it's just a factory.  Why on earth would you be so excited?  

Well here's the thing:   When you are a parent to a child who has special needs an equipment factory that is filled with pieces of equipment that could benefit your child with every day living, feels like you just wound up in Candyland.   You'd look at something and would be like... I want that!!  Or look in the other direction and be like I want that too!  And that too!   Unfortunately the price tags in the US make some things rather impossible for us here.  I get that, I do.  I live it each day.  The same frustrations many of you do.  Medicaid appeals, daily fights for insurance, equipment you can't afford of of pocket.  But these costs don't come directly from Leckey.  Because they are located in the UK they have to work with many third parties to get these products here, some you are familiar with like Ottobock and your local DME (Durable Medical Equipment Providers) they all get to tack on whatever costs they want to the Leckey product once it leaves their factory.  Which is very appealing with the Firefly brand of Leckey.  They are making products that cut out all the middle people, designing products that are more affordable and within reach.  

Every piece is sewn by hand!

Large tables cut fabric that is ready to be sewn
The signatures of almost 150 employees that work for Leckey promising to make a difference in the life of your child with special needs

Upon exploring another recent Leckey product called the Comfee Seat for another family in the US, I received the following information by email from a local Ottobock representative:  "retail prices set for a modestly equipped ‘package’ for each of the three sizes. These mocked up packages include the seat shell and cushions, wooden tray, headrest, lateral calf supports and trunk laterals.  For a size 1, the retail has been set at approximately $10,800, size 2 at $11,900 and size 3 at $12,600, (I’m rounding) with a shipping cost of $650."  You don't even want me to tell you what the Comfee Seat retails for at Leckey.  I will tell you it's not even half the cost.   To date I do not know of any US family that has yet obtained the Comfee Seat, simply because of the price tag and insurance deeming this alternative seating and a non-covered benefit.  

The Comfee Seat by Leckey

Yes it's as wonderful as it looks!
I don't know if it will always be this way, deep down I'll tell you a little secret... I'm holding out hope that maybe, just maybe someday there will be a Leckey factory somewhere in the US!   And then the costs wouldn't be so astronomical and out of reach.  I know it's nice for a girl to dream!   But sometimes dreams do come true.  You just have to believe.  So I'm never going to give up that someday it will be easier somehow, someway for our children to obtain these things here in the US without parents knowing they can't ever reach the price tag.

The factory also gave me a greater understanding and appreciation for the time and love that is literally invested in each piece of equipment.  Everything is hand-made.  Hand sewn and put together completely by hand.  One Comfee Seat in itself takes 36 hours from start to finish to be made.   Before visiting the factory I'd look at Noah's Leckey Mygo and think it was machine produced, I had no idea that there was someone behind the scenes who sewed every stitch by hand.  Carved and molded the base and metal.  It's a factory where they put a personal touch on every product.  It means something to them.  To all of them.  They are making quality products because they are taking the time to make sure they stand the test of time for our children. 

I always knew that Leckey made good products. Noah has always responded to the equipment they make favorably, and I am so glad I got a chance to come away with a bigger understanding of just what makes them such a great company!  

Some of our new friends


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