Wednesday, December 25, 2013

The Pink Shawl

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Noah had a beautiful Christmas, each year he grows with excitement - the same anticipation that other children experience on Christmas.  His brother tenderly helped open his gifts and often shared gifts that were intended for him and gave them instead to Noah.  There is so much love under our humble roof.   Small blessings that truly a gift from God.  Noah received some really amazing gifts from loving hearts, and he adored each one.  So much thought went into his gifts and they match him perfectly!   He was happy the entire day, full of laughter and excited squeals.

Just when I thought my heart could swell with no more love for the gift of happiness in my children's eyes, I opened one last gift under the tree.  A little wrapped package with a card attached.  It was a from a friend that I acquired shortly before Noah's birth, in a mommy-to-be group.  And we've kept in touch since that time, often sharing life's ups and downs -  mostly always being a listening ear and a long distance hug.   I opened the small card and it read:

"On hard days, wrap yourself in this shawl and know that you are not alone.  You have people all around the world who love and admire you and who wish they could do more to lighten your load.  And God is always there for you too, even in the moments when it doesn't feel like it.  And on good days, you can wrap yourself in the shawl and celebrate.  I'm praying for many good days ahead.  Happy 5th Anniversary of being a truly magnificent mother!  You work harder, fight harder, love harder than anyone else I know.  This is a prayer shawl for you, from our church's knitting ministry.  The person made it prayed for the recipient as she made it, and I prayed for you as I chose and wrapped it."

The card that describes the gift: " O Loving God, Renew and strengthen the person who receives this shawl, today and every day.  Grant them peace to lighten life's journey and provide hope to sustain them.  May this gift of yarn and prayers woven together be a sign of Your loving presence.  Hear our prayers for the one who uses it, that You would surround them with tranquility when they are afraid, understanding when perplexed, warmth when they are weary, and peace when they feel uncertain.  May this shawl remind them that they are not alone.  Amen."

It was the most meaningful and special gift I received.  The true heart and gift of Christmas.  That one gift brought me such feelings of comfort and of being loved during all of the hard times in life - for all that I experience.  It felt as if God sent me this care package via the heart of another to remind me that I'm indeed not alone and that through it all I can continue to find hope in all things possible.  My pink shawl to carry me through all the pain and the joy.

I pray that you all felt that kind of powerful love this holiday season, it is the kind of love that will carry you into the new year to find strength and courage to assist you through life's journey.   Merry Christmas to all.


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

Monday, December 16, 2013

Noah Goes Firefly!

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Undoubtedly it goes without saying that I'm in love with so many exciting products coming from the UK.  Imagine our excitement when we learned of a great new product being offered now in the USA called the Firefly!  It's going to be incredible for parents who have a child who cannot sit unassisted in a chair, a grocery cart, or swing.  It is truly a must have item if you have a child with special needs.  It will be available in two sizes, size 1 and size 2.   The size 1 currently doesn't have an adjustable headrest, but still offers a great deal of support.  The size 2 will have an adjustable headrest that will continue to aid and benefit those children who lack in head control and have a tendency for their head to go side to side.   This chair is amazing.   The price retails for $275, which in the land of special needs makes this one of the more affordable products than most and arrives within 72 hours of purchase!
The Firefly Seat

We sat Noah up in a kitchen chair, he also can sit now in grocery carts that have the toddler seats in front, and even mall shopping carts.  Something he couldn't do before.  It opens a whole new world for parents who aren't forced into traveling with a pediatric stroller or wheelchair.  Parents with multiple children will especially love this product as it gives their child with special needs more freedom to participate alongside their able-bodied siblings.   I seen this video the other day of a dad that adapted a remote control toddler car for his son which special needs and both siblings were able to ride and play side by side.  This is exactly the kind of thing the Firefly seat will be a true blessing for.  Firefly is a brand of products designed by Leckey to support and enchance special needs family participation. I've been so impressed with all the products produced by Leckey that Noah has.  And they are a company that genuinely cares about their customers and needs.  It is often rare to find a company that listens to what the community needs, and Leckey does just that.  Many of the products they carry are coming from the ideas of parents who have children with special needs.   More companies need to follow their lead.  They are blazing a great trail.  And as a result are producing pieces of equipment that are essential to improving the lives of children with special needs. 
Noah in the Size 1 Firefly!

The seat is very lightweight and it travels well, and snaps in fast.  The really great thing is that it hugs the child from the sides and gives them the shoulder support they need to sit comfortably upright.  This is great for even children who usually need to sit at a reclined angle in order to be comfortable.   We've been through a lot of equipment with Noah and this one gets 4.5 stars, and only because I think both models could likely benefit from an adjustable headrest.  Leckey is a company that cares about making a customer, not just making a sale.  Something the special needs community needs.  The Firefly would look amazing under the Christmas Tree gift wrapped with a bow!  It will make the new year for you and your child easier and more comfortable.

Here is the link to check out this amazing product:


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

Saturday, December 14, 2013

The Magic of Santa

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Santa represents the concept of kindness, peace, giving and unconditional love.  He brings about memories of  the perfect cup of hot chocolate with miniature marshmallows on a cold winter's day, the sound of "I'll be Home for Christmas" dancing in your mind, the perfect doll that you wanted left under the tree.  Santa brings beautiful anticipation and hope in all things possible - the magic of Christmas.   He is the gleam in a child's eye and the excitement that resides in a tender heart.  A true representation of all that is pure of childhood innocence. 

We often forget that magic that touches our lives as we grow older, and somehow that spark is again discovered when you have the opportunity to re-live that magic through the eyes of your own children.   Noah has always adored Christmas time.  Santa, elves and reindeer creating laughter in a child often as early as July of each year.   Noah is what inspires us to even put up the Christmas tree and decorations earlier and earlier with each passing year.   His laughter and excitement entertain our hearts as parents with unbelievable delight.  We remain forever grateful that despite Noah's tremendous challenges that he is happy and he knows that he is loved - the joy he finds in the smallest of holiday spirit is an unbelievable blessing. 

Today our friends at North Metro Fire Department gifted Noah with a visit from Santa at home.  They sent for Santa all the way from the North Pole, and coordinated his visit with a handful of loving helpers to visit him and his little brother.  It's a such a special moment when you see that fire truck pull up and know the love that has just arrived for your child that can't otherwise visit Santa comfortably or safely at a mall.  Santa had the coolest sunglasses today.  He came in the afternoon when it was still daylight.  Santa rocks his shades!  He had an amazing team of volunteers who were filled with such love and kindness.  Santa held Noah, while he enjoyed playing in his beard - a sensory seeking thing he's always loved to do.  Santa was so patient and understanding of Noah's needs and brought him and his brother some really neat airplane toys that launch.  Santa launched it into one of his helpers and we all were a bit surprised on how powerful that toy really was!  It gave us all a really great laugh as the rest of Santa's helpers tried to take cover just in case Santa decided to aim that airplane again! 

Noah's little brother, Luke, wasn't so certain of Santa this year.  The first time he's really showed any apprehension about Santa, but also likely the first year this is all starting to make sense to him now that he's older.  It took him a little while to warm up to the idea of sitting close to Santa but he finally was able to do it, which gave Noah even more time to tell Santa his wish list.  I think Noah rather preferred to have Santa mostly to himself.  We were all able to take pictures of Santa and his team outside our house.   Santa's team was so sweet, a little boy in the neighborhood came out to see what was going on and Santa and his team gifted him with a firefighter hat and Santa told him he'd be back for him as well Christmas Eve.   There are moments in life where you feel your heart could often explode from the little happiness that other people create for your difficult journey.  They see only a child that they want to help at the holidays - a child worth just as much love and kindness as the next.  I pray they all with be blessed with the same blessings they have bestowed up on us today.  They are building memories for us that we will treasure forever with Noah and his little brother.

"They err who thinks Santa Claus comes down through the chimney; he really enters through the heart."  Paul M. Ell 


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

Wednesday, December 4, 2013

Blue Miracles

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After lots of fundraising efforts, we were finally able to purchase Noah a PPod and Nessie from the UK.  Something that didn't come without it's own set of challenges.  We had waited for several years for the company to be willing to ship to the USA.  And finally they were able to ship the PPod and Nessie.  The PPod is a specialized posture bean bag for comfort sitting that also offers both support and great hip comfort.  The Nessie is a posture pillow that aids in tummy-time, weight bearing on arms and assisting with encouraging a child to lift their head.   

As with most things in our lives, the PPod and Nessie didn't come without some challenges along the way.  We've been dealing with Fed Ex International/USA Customs for about two weeks.  They wouldn't give the products clearance to be shipped in the USA.  The first agent said it was because it was labeled "durable medical equipment" another agent said because they had concerns with the "beans" in the bean bag portion of the chair.   I truly couldn't get a true answer to the hold up, but after networking with another special needs parent in the UK who had connections to UK customs and a old friend here that worked for Fed Ex, help came and I'm relieved to be able to say the PPod and Nessie arrived today just a few minutes after 10am... two blue pieces of amazing equipment - Miracles!
Noah's PPod

Noah loves it.  His soft little body instantly melted into the soft fabric and he giggled with delight.  Worth all the tears - all the hard work it took to get it to him.  I think I likely should have ordered a larger size, and without a doubt a 5 point harness for it - why I didn't inquire about a harness is beyond me.  I think I was just so overly excited I honestly forgot that little detail.  I am praying it is an accessory I can order after the fact and that I didn't need to order it at the same time I did the PPod seat.  I also think Noah needed a large size Nessie and not the small.  Not sure about my exchange options as I haven't been able to connect with the company yet due to the time change difference.  I'm hopeful we can work something out, but I'm sure it will involve more money and it sure took a lot to just get this far.   But I have faith God will help me find a way.  

Even though the Nessie that was sent is too small, Noah was able to get his head up for brief periods using it.  Something that will be so huge for therapy purposes.  I wish things like this existed here in the USA, we truly need them here.  But I'm so thankful we can import them in - even as difficult as that process was.  
Noah's Nessie

Noah had a wonderful Thanksgiving.  Our entire family dined at Zolo's Southwestern Grill, and every table had a child in a wheelchair.  For the first time in my life I didn't feel like we were the elephant in the room.  Everyone was just like us.  The food was amazing.  The best cranberries I think I've ever had, with a creamy pumpkin pie with homemade whip cream that Noah adored.  And they even made a plate for Noah that we brought home and pureed for him later.  He loved it.  The whole experience did my heart a world of good.  And we will forever remember the blessings of that kind and loving restaurant. 

Noah is now gearing up for his birthday and Christmas.  He'll be turning five this year.  It's such a big number for me - five.   I'm so blessed to have this child in my life, five years later after they said he'd never survive.   We are planning on having the same photographer who took Noah's goodbye photos when we took him off life support take his fifth year photos.  We have come so far. 


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

Sunday, November 24, 2013

Noah's Dream House

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The Engineering Department at CU Boulder is building the ultimate playhouse for both Noah and his little brother.  Really the first of it's kind - a playhouse that incorporates play features a typical child and a child who has special needs so that they can play alongside each other.  The lower portion will be "Noah's Cave"  the upper portion "Luke's Loft."  I had a chance to see pieces of the project and I'm just in awe of the talent and time that these college students have invested in this project.  I never would have thought about half of what they have done to make this playhouse extra special.  It has always been a dream of mine to have a play area that both boys could enjoy and that would assist them in playing together - this kind of goes beyond the dream. 

The playhouse is rather large - 7 feet wide by 12 feet long and around 7.5 feet tall.  So it will be much like having a shed in our basement.  The dimensions of the the playhouse were really driven from the desire to be able to have Noah's wheelchair be able to fit through all doorways and have an adult attendant with him be able to actually stand comfortably in the playhouse.   The students have broken up the project in several teams.  One teams is handling a rock climing wall and slide for Luke, another the exterior, another for interior painting and decor, sconce lighting, paper rocks that look so real,  an airplane that will fly overhead, LED lights that Noah can control with an adaptive switch, sensory lights that recognize Noah's movement, a mailbox that will sing his favorite song when you open it, a matching shapes game that will offer light rewards if you get choices correct, and a stand for his IPad so that he can pull up and play with it in a wheelchair.  The house will also have soft sensory flooring for Noah to lay on.   We are so excited to see it all put together when it is done and then built in our basement early December.  I think the boys will just love it. 
One wall of the Playhouse

Interior Walls of the playhouse (yet to be decorated w/Jungle Theme)

Future Rock Wall

Flying Airplanes for the top of the playhouse

LED lights activated by adaptive switch

Luke's Loft and Noah's Cave

Noah's sleeping continues to be a challenge.  We still can't seem to find the true root of the additional sleep disturbances that he is experiencing.  He's just restless, but his brother is the same way, so it could just be typical toddler sleep patterning.   We weren't sure if Noah was cold in the night, so we've bumped up the heat quite a bit and are dreading our Xcel electricity bill when it arrives.  I know it's going to blow us away, and we don't qualify for LEAP financial assistance.  Noah may always lack being able to safely sleep with a blanket and he cannot move in sleeps sacks and could be susceptible to pressure sores if he was unable to move himself as much as he currently can - and even then often times we need to reposition him - especially if he gets stuck up against the side of a bed wall.  

The Christmas tree went up yesterday.  Noah is celebrating.  This is definitely his time of year.  We still have to put up his Christmas train, which I sure his little brother will attempt to place off track, before Noah has an opportunity to derail it.  Just hoping this train continues to make it another year.  It sure gets a lot of Noah abuse with Noah rolling into it and swatting it around.  But it is one of his favorite things to do.  It's hard to believe that it's almost December - and soon to be Noah's 5th birthday.  Although time seems to fly, it never travels faster than one day at a time.


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

Monday, November 18, 2013

Counting Blessings

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Yesterday I had the rare treat of getting to go to lunch with two other special needs moms. We had a long lunch spending a couple hours discussing all topics relating to our children - comparing notes about therapies, Medicaid denials, nursing, respite, diets, medications, doctors... lots of topics that most parents don't have to think twice about.  As we spent the afternoon together having lunch and walking the local mall we discussed how unpopular we are as special needs parents with government agencies, public school systems, doctors that don't listen, nurses that steal drugs, respite care providers gone bad, medicaid denials gone both good and bad and the fight that follows, therapists that road block you from pursuing avenues that would improve your child's quality of life.  And the most well seasoned mom out of the three of us, said the most powerful thing today.  Turn your tears into re-directed energy.  Think about how you can make that person or group that is causing you to cry to have a very bad day.  Sweet revenge in a sense with comes finding a way around them.   So what you tell me no... I will find someone that says yes... that says yes to helping my child with open arms.  In our time together I realized that the three of us in our own individual ways are some of the strongest, and most powerful advocates you could ever begin to imagine.  We have fierce drives and incredible profound love, that makes us so powerful even on the hardest of days.  We are like the energizer bunny... we keep going and going and going for our children.   You can try to knock us down, but we'll get up each and every time and figure out how to advocate for the needs of our children.  Inevitably I feel sorry for those who think they'll stand in our way.  Eventually you will lose.  The odds are not in your favor.  We have a fire like no other.  God made us fighters to go the distance. 

Yesterday I drafted the strongest appeals letter I could write for Noah's most recent Medicaid denial, a pediatric crawling device - deemed "Not a medical necessity" even after being recommended by a physician and a therapist.  Now I wait for my telephone hearing before and Administrative Judge to battle it out and attempt to convince them to overturn their decision and fund it.   And this of course won't be the last denial I'll have to fight.  Sadly, it is common - more common that it should be.  I think Medicaid and other agencies are rather relying on the hope that we'll give up, accept the denial, put our tail between our legs and go away.   But we don't know how to turn our backs on helping our children.  So we become soldiers of one.  Battling for every need that they have.  Exhausting at times, but we keep marching forward.

We got a very beautiful invitation for Thanksgiving this year.  We received a flyer in the mail, inviting special needs family in our community to a restaurant for Thanksgiving dinner, for no charge and no tip.  And they were also inviting 12 of your family members to attend with you.  Yes doesn't it sound unreal?  It did to me too.  I think must have read it at least five times, then had to sit down and read it a couple more!   I've never seen or heard anything like it before.  And what a gift.  You can only begin to imagine how challenging the holidays can be with a child who has special needs.  I loved cooking Thanksgiving dinners and had done so pretty much every year since my parents divorced when I was 19.  I remember trying to cook my first Thanksgiving dinner after Noah's birth - it was so difficult.  Noah was tremendously distraught in his early years, he screamed, cried almost twenty-four hours a day.  I bounced him endlessly on exercise balls, turned up every stereo to try to find something that would soothe him even for 30 seconds... I cried more tears that first year than I had done in my whole life.  I was so lost, so tired, so beside myself with grief and trying to accept my new life in the role of a special needs mom.  Thanksgiving to me was a way that I could prove that I was able to juggle both a very challenged child and cooking.  Although many hands were offered for help, I declined wanting to conquer the goal - a turkey dinner with all the trimmings and me serving my family around the table.   I did it.  But it was far from easy, and looking back on it, not sure how I did it, and I wouldn't want to try it again.  It inevitably has grown easier since then, since Noah is now older and able to self-soothe to a large degree.  But it does take extra work, that other households don't necessarily have to balance while preparing a large meal.   So this year, we decided to take up this wonderful offer by Zolo Southwestern Grill and accept their kindness and amazing offer to have them prepare our Thanksgiving dinner this year.  Noah and family will be dinning out.  And I'm excited - thrilled actually to be surrounded by other special needs families - we are a group of people in the community that never fail to count our blessings. 


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

Monday, November 11, 2013

Paint the Pony

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Noah has been doing so well at hippotherapy and continues to make huge strides with his head, neck and trunk control.  He can now look both directions that he's traveling in, and hold his head up for long periods of time.  It is truly amazing how far he has come.  One of the best and likely most expensive therapies that he does.   We were so excited to see pictures of Noah for Colorado Therapeutic Riding Center's Paint the Pony Brochure!  He looks truly sweet on his horse in his pictures.  We are so proud of our little cowboy.  His hippotherapy therapist also made these great shoes for Noah.  They have wooden platforms glued on the bottom of the soles of his shoes.  Noah walks with assistance after he gets off his horse and this helps him firmly plant his feet one foot after another.  The are very effective and what a great fix to help him walk better. 

Noah's shoes with platform wood bottoms for walking

Samson, Noah's service dog left to Utah several weeks ago to finish basic obedience and skilled training.  We received some rather sad news last week that Samson, has failed the program.  Our family grew very attached to Samson through the last year of his life, and as a result Noah's grandmother has decided to adopt Samson into her home so that we'll still be able to visit and see him periodically.  We hope to hear soon about the next plans to replace a service dog for Noah. 

The change of seasons, or maybe even the time change itself continues to present night time challenges for us.  We are always up in the night to assist Noah, but it never fails that either the change of seasons or time changes seems to spark even more late night trips to Noah's room to help him.   It's always a trick to guess what he needs - hungry, too cold, too hot, too restless, getting sick... doesn't like the sheets we put on, the room isn't dark enough... trouble shooting at 1am isn't really a bowl of cherries but we continue to try each and every night.  I really wish that Noah could safely sleep with blankets like other children, but he has so much movement that he wraps himself up in them and they pose the risk of suffocation, he won't sleep in a toddler sleeping bag because it's too bulky and prevents him from flipping over.  They make an anti-suffocation pillow (of course that is also made and shipped from the UK) but as far as I know I haven't been able hunt a anti-suffocation  safe blanket.  Noah's has also experienced difficulties recently his fleece PJ's with footed feet seem to be driving him crazy.  I can't tell if it's the closed in feet, the zipper all the way up, the feel of the fabric, or that they aren't form fitting that is sending him to the moon.  So he's sleeping in day clothes with socks and that seems to be working better.  

Chris and I are also struggling with our aches and pains.  One might think - really how hard can it be to carry an almost five year old child around? - He's still fairly little - but you have to consider we have to carry him everywhere.   Transferring in and out of a bath, to bed, on the floor, to his feeder chair, in and out of car seats, and wheelchairs and strollers, we also run him around because we are his legs and his arms...  Chris has severe back issues, and I seem to be feeling it like a bunch of pinched nerves in my legs, feet, arms and lower back - and of course we're again parents, in our late 30's - things aren't going to get any easier for us as we get older.  We joke that we'll have to hire some young strong person to help us lift Noah place to place someday.  It's the things that most people don't even think much about when they see a family like ours. The physical strain is as real as the emotional and financial strain.  Collectively it all wears you down, little by little.  And we just continue to pray for God to give us lots of strength and good health so we can keep being Noah's ability to be mobile in all ways that he can be.

“You never know how strong you are... until being strong is the only choice you have." Cayla Mills


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

Wednesday, October 30, 2013

New Traditions

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

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

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

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

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


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

Friday, October 18, 2013

Life's Smallest Miracles

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

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

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

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


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

Friday, October 11, 2013

Expect Anything

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

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

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

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

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


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

Friday, October 4, 2013

Rising Waters

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

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

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

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

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

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

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


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

Tuesday, August 20, 2013

Blind Trust

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Without question having a child with significant special needs forever alters your life.  It completely changes the person you were before.  Patience, perspective and priorities become clear.   You suddenly realize all the years you spent getting upset about trivial things like a wrong coffee order, or someone taking a parking spot you were waiting on means nothing.  Other aspects of your life also change, how you go about doing things, how you plan, and where you go.  And the part that many don't openly discuss - how you handle relationships whether it's friendships, casual contacts or even family significantly changes.  Your faith in humanity is altered, you see more good than bad.  You want to believe with your entire heart that the world is well-intentioned, pure and just as innocent as that disabled child that lays before you.

After Noah I found myself with each passing year growing more dependent on others.  The independent, self-providing person I was disappeared.  I quickly realized I could not accomplish everything that needed to be done and also care for Noah full time.  It started off as little things like not being able to shovel your snow timely according to city regulations, then to repairs like the sink leaking, a toilet not working... to even yard work, I lacked the ability to even water or go pick a garden I put so much love into.  Because Noah took every ounce of my time.   I learned quickly that giving hearts without expectations of something in return were rare.   I learned if you needed help that we'd likely have to find a way to pay for it, as often times love, kindness, and help are not free.  

We recently needed a door replaced.  So off to Lowe's we went.  We purchased a door had it measured by their installation team and installed.  Something that should have really been a no big deal kind of thing.   A young guy, at 24 years old came who was contracted to help his dad.  I didn't think much of it, figured he must know what he is doing if Lowe's hired him as a contractor.  The door went in, but immediately was off center, you could see daylight on all sides and it was allowing heavy rain to come into the home.  He also said he couldn't re-hang the storm door that was already there in front of the door we needed replaced and said we'd have to go purchase a new one at the store and he'd be back to install it the following week, which meant more money for us with an anticipated door that likely didn't need to be replaced at all - just because he said he couldn't rehang it. I called Lowe's who sent him out again to fix it, was told he'd be out to fix the door.  Upon his arrival he said our new balance to fix the door and install the new door that he said we needed because it would no longer fit the new frame was $180.  He demanded a check payable to him, indicating it would get back to Lowe's.   I trusted and wrote the check - we needed the door fixed.  The door continued to have problems, the trim and wood and insulation continued to show through on the interior and exterior and it dragged on the flooring so badly you couldn't even hardly open it.  Once again we called for repair, once again he came out, lifted up the frame and added little pieces of plastic in the corners of the door to offset the fact we were seeing daylight and it was still not installed properly.   Upon his last visit he said he could help us order an interior door that we needed and quoted us $400, said he'd get it done and the door ordered for us through Lowe's.  This time he asked for cash as he'd get a better discount with Lowe's for ordering the door with cash.  We gave him cash, knowing this door would really help Noah be protected from a bathroom light at night, something that Noah struggles with.   He called the next day, demanding an additional $300 saying he under-estimated the cost of the door as it would need to be a custom size, we declined as we have no more money and had to acquire debt to even pay him the $400, he asked if I'd pay him off over a period of time, again we declined indicating we had no more money - even down the line.  He called back saying he could indeed order the door after all since Lowe's gave him a significant discount on the price of the door, but requested to come back to take measurements one last time. 

Noah has been sick with a sinus infection and has been vomiting.  In true little brother sharing-germ-style both kids have passed a bug.  I've been so occupied with blow out diapers, vomit and keeping everyone as healthy as possible and running to the doctors that I've been a busier than "typical day" special needs mom.  I asked him to come by when the children were well that now wasn't a good time, but he rang my doorbell anyway a 1/2 hour later.  I opened the door thinking it was my mother on her way to rescue me with an extra set of hands for two very ill children.  Noah threw up upon his arrival, so I tended to cleaning him up while he went about measuring a door in another part of our home.   He shook my hand and was quick to disappear.   As annoyed as I was that he stopped by when I specifically asked him not to, it left my mind quickly as I continued to feverishly get the boys ready for a doctor's appointment. 

After dinner we learned the worst thing had happened.  Noah's communication IPad had been stolen.  It's bulky, safe padded cover - one that is even difficult for an adult to remove or put on was empty and thrown under the bed.  My heart sunk.  I knew immediately what had happened.  Without question.  Without any shadow of a doubt.  He stole Noah's IPad when I left him unattended in my home, all the while I was taking care of a severely disabled child who was vomiting on the floor. 

I contacted the police department, who investigated.  The contractor later confessed to attempting to selling it at Game Stop without success, who later found strangers to sell it to for $180, and then he turned around and gave the money to his drug dealer.   The police officer doesn't have hope we'll ever recover Noah's communication IPad, which was filled with so many expensive applications that we've purchased over the years.  Something that Noah uses religiously everyday of his life.  Something he expects, something he demands to keep him happy and entertained.   I gave him opportunity after opportunity to scope out our house, to know where that IPad was generally kept, I trusted him and gave him money that I thought was going to Lowe's and wasn't.  And now we are out money that we don't have to replace.  Stupid feels like an understatement.  I feel like I have sucker written all across my forehead.    

In my trust in others, I never imagined that I would be taken advantage of with a special needs child.  Never dreamed that I would be viewed as an easy target.  But I was.  And I should have known.  I made it easy because I had my hands full and was distracted.  And it happened right underneath my nose in a matter of minutes.  In my extreme need for help because my husband and I lacked the time to work on a home project ourselves, someone seen a golden opportunity to use us.  A hard lesson I learned.  While I recognize that I still will inevitably lack the time to take care of things around the house without hiring help, I have to realize that not everyone has good intentions, not everyone will look at Noah and feel badly for him, not everyone will have it in their hearts to help a struggling family with a disabled child.   It's the first time I understood just how easy we are to take advantage of.  

Please pray for the miracle of the recovery of Noah's stolen IPad, even though the police officer feels it is unlikely.  I feel so badly that this happened to him.  I feel so responsible that I didn't properly protect something he loves so dearly.  I should have known better, but I have let my guard down so much since Noah's birth.  I want so badly to believe everyone we come in contact with cares about this little boy that they meet.  And although some changes and lessons about having a child with special needs have taught me so many important aspects about life -  this lesson was hard. 


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

Thursday, August 8, 2013

Breaking Silence

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I have sat in silence about something very difficult in our lives since Noah was born.  And now I have made the decision to speak out and openly discuss what has been happening in our lives all this time behind the scenes.   After Noah's birth we sought the truth about the circumstances of his birth and what happened.  What we discovered was truly heartbreaking - prolonged distress on a fetal monitoring strip showed Noah was crying out for help and was not delivered timely, ultimately causing him to be born dead - not breathing and without a heartbeat.  After thirteen long minutes Noah was resuscitated but the damage had been done.  Noah suffered global brain damage.   After contacting attorneys and multiple medical experts it was determined that a medical malpractice lawsuit should be filed to hold two nurses, a doctor and the hospital responsible for what happened to Noah.  We endured nearly four years of legal proceedings before Noah's case went to trial in February of this year.  After a four week trial, in March a jury ruled in favor of the Defendants.  We remain devastated and stunned by the jury's verdict.  The Defendants sought a bill of costs against us for what they claim it took them to fight against us.  A Judge agreed and awarded costs in the amount of $173,916.76 and an amount of $166,162.41. Channel 9news, Denver, Colorado will be airing Noah's story after the Bronco's game tonight. A web link of the story will be posted when it becomes available.  I want to truly thank all of you who were praying so hard for Noah and our family, to those who continually offered me words of encouragement on my worst days, when I failed to properly explain the root of my despair and grief.  I am so sorry I was unable to tell all of you at the time what was happening all these years.

"A Colorado family with a disabled child is being forced to pay a hospital's $340,000 legal bill after losing a medical malpractice lawsuit. Some of the items in the bill include desserts, dinners, bar tabs and even a hotel smoking fine for the other side. Tonight, after the game, I'll show you the legal consequences of losing a lawsuit and we hear from the family stuck with the bill." - Jeremy Jojola, 9news Reporter


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

Tuesday, July 23, 2013

A Journey With Wings

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There has been so many things going on in Noah's life in the last month.   In early June, Noah's friends at 501st Mountain Garrison invited him to Comic Con.  We really had no idea how big and popular Comic Con truly was going to be, but were so excited to be asked to be included in the 3 day event.   Noah loved it.  It was the first time I think we have ever taken him anywhere where he was completely happy and content for an entire five hour stretch.  And with 61,000 people in attendance we were so surprised that Noah was capable of handling such an event. It was truly wonderful as all of our 501st friends made it so comfortable for Noah, they even gave us stormtroopers who had the built in speaker systems in their costumes to guide us through the busy crowds and making a way for Noah's wheelchair.    They also surprised us with meeting Peter Mayhew, (also known as Chewbacca in Star Wars).  He was the most loving and kind person you could ever imagine.  And he genuinely cared and loved Noah.  Truly a gift and and a dream come true both for Noah and his daddy.   Peter even donated to help Noah with his therapy costs from his foundation.   501st has always made us feel like we are such a part of the world, they include Noah like he's just like everyone else.  It is the most amazing feeling of love and inclusion you could ever imagine.    There are so many hugs and so much understanding.   They have filled our lives as a family with such joy.   They have become a huge part of our lives.  We have connected with so many people that will be forever friends in Noah's life. 

Noah Meeting Peter Mayhew

Noah & Daddy at Comic Con 2013

Noah & Family with Peter Mayhew at Comic Con 2013

We took a little break from Noah's once a week school efforts, but hope to resume soon. It's still really a touch and go kind of thing for Noah.  He is still fighting a tremendous sensory gag reflex about attending - even for small amounts of time which cause him to throw up time after time, and the only thing that stops it is when we leave.  I can't quite tell what the trigger is - if it's the excitement of other children, if they approach him too fast, or if he gets excited and doesn't know how to process things.  I just don't know.  I wish I did so I could help him through it.   His teachers and classmates are beyond understanding, and are filled with unlimited patience which makes it easier to come and go as we need for him.   We're all trying to help Noah the best we can with everything. 

This last weekend Noah's family from Texas and Boston came to town in order to spread his great-grandmother's ashes in Estes Park.   It was the first time Noah had met his cousins and he really loved being with them.  They were so loving, attentive to his needs and sweet.  He rather adored their attention.   It was a lovely thing to witness.  Noah did fairly well on the drive up and back. Sometimes Noah has a tendency not to travel well, but we were able to get him a new pediatric car seat which I think significantly made the difference in being able to travel with Noah a little easier.   It was a little tricky pushing Noah up the mountain side in his pediatric wheelchair stroller, thank goodness that they gave us all terrain tires on it, the bumps made Noah gag slightly and throw up a couple times, but over all he handled it well.  His daddy held his hand and helped him spread his great-grandmother's ashes.   His great-grandmother truly loved Noah very much and I'm blessed that he was a part of that moment.   We all took turns talking about our memories of Nana... and even though Noah couldn't verbally participate I'm sure he was thinking he remembered the time when she let go of his wheelchair and turned her back to admire a flower at the Butterfly Pavilion sending him down a little incline and he almost went into the small pond area... he thought it was funny.   It was a run-away wheelchair moment that sent me into a fast chase. This was the first time our family has spread ashes, and I must say emotionally it was easier than a funeral service.  There was so much peace about the experience.

Noah spreading his Great-Grandmother's Ashes
It has been a difficult month for me, as Noah turns 4 1/2 and I continue to do all that I can for him.  There are days of course where I feel I am not doing enough, struggling to provide for Noah all the chances for recovery, battling behind the scenes some difficult circumstances that most don't yet know about.  It's a constant struggle to continue to find ways to pay for all of Noah's out of pocket costs and needs which isn't getting any easier the older he gets.  But life is a journey with wings - we all have wings that need healing, even me, as I continue to grieve the loss of what should have been for Noah - even years later.   My heart is wounded, my soul forever struck.  They say there is purpose in the pain, and I am always searching for that purpose.  A greater reason behind all that we experience as a family with a severely disabled child.   I'm much like a flower trying to learn to bloom where I've been planted at the moment.  But as long as I have Noah I know that my roots will grow strong.  All I have to do is look at him and know that every decision I make I'm doing for him.  And I know that God will provide because I'm giving this everything I have.

Now that which was of the earth, lies here in these few ashes. These we now return to the earth, into the cradle of life, the womb of the world from which we were all brought forth. Life is a process in which we are all linked. We merge and reemerge. That which was earth returns to earth. That which was air returns to air. That which was water returns to water. That which was fire returns to fire. We cast these ashes that they may start life anew.  
In Loving Memory of Norma Jean Brannan (Nana).


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