Monday, January 26, 2015

These Shoes Were Made for Miracles

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Noah has a lot of shoes.  A collection since he was born.  The cleanest shoes you've ever seen, they look like they've never been worn.  Only two pairs have ever touched the ground. Yet I have them all, and they each have their own story of how they came to be. 

His Robeez shoes because he screamed with any other shoe due to sensory issues.
His Sketchers because they light up when you walk and I thought that Noah would learn to take his first steps if I was just patient enough.
His cheap Payless Disney Planes shoes because they were easy to get on and had good quick velcro
His Piedro Shoes that I paid gobs of money for and had shipped from Canada because I thought they'd help his legs and feet become steady.
His Sure Steps because I was convinced if we mounted them to the Taos orthotic device he'd learn to walk.
His Hanna Anderson slippers because I thought he'd appreciate warm feet.
His Jack and Jill Boots because I hoped he'd tolerate boots to be outdoors in the snow.
His Carter high tops that we mounted wood to the soles so that he'd feel the wait of his feet while trying to walk at therapy.

I held so many dreams and wishes in all those shoes. 

Noah recently acquired my most favorite pair of shoes.  They didn't come for a specific purpose.  They came simply as a gift love.   Peach's Neet Feet designed a very extra special pair of Miracle Shoes for Noah.  A non-profit organization dedicating their talent and time to providing selfless acts of giving. They use art to create custom, hand-painted shoes to celebrate children who are fighting cancer and living with disabilities.

These shoes meant the most when they arrived because they were simply designed to celebrate Noah.  Shoes that capture and represent his spirit.   There is a quote that another special needs parent passed onto me years ago when Noah was very little "If God sends us on strong paths, we are provided strong shoes."   It was one of those say it to yourself over and over again thoughts until I fully understood the true meaning of what that parent was trying to tell me.  The path of a special needs parent isn't an easy one.  It is the hardest level of parenting one could ever imagine.  But the significance of that quote is that we were given all the tools we need to walk this path.  We were handed those strong shoes to walk this strong, complicated, challenging, painful yet incredibly rewarding path.  

And Noah's Miracle shoes are a beautiful reminder of how strong he is, how strong we all are as a family.  And they happen to be super adorable and were made with such love. 

"Kindness is so small, but so big in the lives of others.  It's not what you see, but how you see it." Madison Steiner (Founder of Peach's Neet Feet)


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

Saturday, January 24, 2015

Growing Pains: Did She Just Really Say That?

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Noah's been on a growth spurt lately.  Which caused him to essentially outgrow his power wheelchair insert chair that also sits on a traditional zippie base for speech therapy with an i2i headrest.  I noticed that it was leaving marks underneath Noah's arms and that he was very uncomfortable and upset while sitting in that particular seating device.   Medicaid on that molded chair allows for revisions or new molds for three years without asking them again for approval.  Wish that all his equipment needs had the same kind of policy with growth. 

In any event it made us make the long drive to have his molded Aspen seat modified.  Luckily he didn't need a completely new mold but rather padding changes and lengthening for his legs and height adjustments for his shoulder straps, we also took in his toilet seat for adjustments which was great too (as they share the same mold).   Noah sometimes gets bored at these appointments as there is a bit of wait time while they work on it, so he walked up and down the hallways with his daddy to keep him busy.  There is no way I could attend one of these appointments by myself.  Noah would be screaming after the first five minutes.   His dad is my only hope of getting through long appointments and a long drive.  Those two are best friends forever and dad has a knack for keeping Noah happy.

The appointment went a little bit quicker than we expected but we still would have been stuck in rush hour traffic, something that frustrates Noah tremendously while traveling.  So we opted to go across the street and have dinner and then try for home.  We chose Texas Roadhouse (his daddy's favorite).   Because of Noah's wheelchair we need to always sit at a table and most are generally in the back at that restaurant.   Noah demands to eat promptly upon arriving at any restaurant even before anyone else can even place an order.   Which means we must pack his meal, and then order him desert. 

Noah was into his first few bites of food when the hostess was going to seat another party next to our table.  It was another couple, however once the woman seen Noah she told the hostess rather loudly that she couldn't sit next to "him" pointing at Noah and that they needed to sit on the opposite side of the restaurant.   What is that disability segregation at it's finest?   Part of me was hurt, (how can I not be no matter how many times mean things like that in public happen?), and part of me was really pissed.  For a moment I wanted to publicly shame her on her behavior and call her out in front of everyone for her incredibly rude way of thinking and acting.  But that would have only created a scene and the woman would have learned nothing from it.  Once a person has that mindset, you cannot change it.  They will remain forever ignorant. 
Even worse, Noah looked on confused as he understands words and conversations.  People don't fully realize that Noah understands what you say and your actions.   And at six years old he is beginning to realize how some people perceive him in this world.  Painful for him, even more painful for us that I cannot guard him against it.

I remained internally devastated, I ate my salad but I couldn't taste it.  I went about eating mechanically like a robot going through the motions.  Noah's face smeared with food which is how he typically eats.  It's a bit messy.   I watched others watch us.  Wondering how many people felt the same way that woman did but lacked the guts to actually say it. 

Another party was soon seated in that couple's place.  A family with a single child around Noah's age - a boy.    My already wounded self felt like I stroking my personal pity party.   There sat a child Noah's age doing all the things Noah can't do... blah... blah... blah...  dig the sword deeper I said to myself...

Until that little boy spoke to his parents and shifted my thinking completely around.   I overheard him ask his parents why Noah was in a wheelchair.   They replied they didn't know but that they could tell that he was a sweet little boy that would make a great friend.    That family having zero clue what transpired only ten minutes earlier was teaching their child to love those different from himself.  

And so be it the lesson was mine, for that little boy wouldn't have had the opportunity to see Noah, to grow, to learn to love and see someone like Noah had that woman not misbehaved and booked it for a different section of the restaurant.  And in the end it's a new generation that holds so much hope in changing how we treat and perceive others with disabilities. 

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

Tuesday, January 20, 2015

Mandatory Milestones

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I never watched him learn to sit.
I never watched him rock to crawl.
I never watched him pull to stand.
I never watched him brace himself to walk.
I never watched him take his first independent step.
I never heard his first word.
Milestones that cerebral palsy took away from me. 

I see those milestones sometimes in dreams.  They must lay subconsciously heavy on my heart if I dream about all I missed and all that he cannot do.  I see him walking, I hear him talking.  His words so sweet, he runs and plays.  So vivid and real that sometimes I wake up and for just a moment I forget that it wasn't real.  But I see it all in dreams.  Just how it was supposed to have been.

The new year brought some changes for Noah.  He gave up the bottle cold turkey, which was a huge surprise to us.  We had been using a medical cup at meal times, and supplementing with traditional baby bottles during the day.  Until Noah just refused to open his mouth and shook his head in protest and refused to suck on a bottle.  So now he's drinking completely from cups.  Something I wasn't sure would ever happen, even more surprisingly that it wasn't something we were working on him to give up.  He just decided one day out of the blue he was done with baby bottles. 

And January 2nd, 2015, a mandatory milestone happened... Noah lost his first tooth. 

I had suspected it may be getting to be around that time that most children start losing teeth.   Yet, I had resigned myself to the fact that I may likely never see milestones of any kind.   So when Noah lost his first tooth, I felt this surge of emotions.   For a moment... a brief moment I was a part of how life should be - a piece of normal.   Something that other parents get to experience I finally got to experience too, right on typical child timeline. 

Noah understood that he had lost a tooth, we talked to him about it, and explained the tooth fairy would be coming and leaving him money in for his tooth.  We asked him what he wanted to spend his money on and he replied cheesecake (by vocalizing his "yes") when we ran down a listing of options he could spend his money on.   We were not surprised, he does love his cheesecakes. 

Noah cannot sleep with a pillow because blankets, sheets and traditional pillows pose a suffocation risk, we had to get a little creative with where we'd leave the tooth for the tooth fairy.  We told Noah we thought she'd easily find it on his dresser.  So we placed it in a little tooth container for him.   And told him that she'd come when he was sleeping. 

I knew that Noah wouldn't be able to check his own dresser for his money and might be disappointed with not being able to check under a pillow for the trade the tooth fairy makes, so I stayed up really late and stalked his room so I could catch the tooth fairy for him and take a picture.  Thank goodness for Noah's bedroom camera as it made it a little easier to catch her in the act. 
Noah's First Lost Tooth
It did me a world of good to experience a mandatory milestone - and one that was filled with a bit of magic.


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

Saturday, January 17, 2015

Why Me? Why Anyone?

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I was having a conversation with my mother the other night rather reminiscing about all of the school projects and activities I did as a child that were memorable and served as a learning experience along the way.  It started out over discussing what I could do with Noah while homeschooling him as fun activities that he'd enjoy.  

We talked about how I made homemade butter by shaking cream in a baby food jar, how I watched monarch cocoons and released them, how we took a field trip to a nearby stream and I caught a crayfish and he lived in a wading pool in the class room with a cool whip container with a cut out section for a door for a house, and how I named that crayfish CP (shortened for Cutie Pie).  And then the term CP hit my heart like a ton of bricks.  The acronym that now stands for my son's severe disability... cerebral palsy.    All these things like maybe what was eventually going to become the story of my life foreshadowed in some way even in my earliest of years.  Coincidence?  Maybe.  But maybe not.  As beautiful friends sharing the same condition as Noah, sprinkled in my childhood and to this day remain lovely friends in my life.  Could it be that I was simply being groomed for the ultimate challenge?

Thoughts like why me?  "Why anyone?" I asked my mother. 

As she replies "Because you had what it takes to do this."

Some argue the theory that children with special needs are not given to special parents.   Maybe because we want to believe that anyone in our shoes would rise to the occasion if it they had to.  But the truth is, not all would make the same decisions that Chris and I did.  There are people that would have consented to doctor's encouragement to starve their child to death, who would have given him up for adoption, or who would have taken him home and wished him to die, or felt he was a burden, or neglected and abused him.   There are endless stories, some tremendously tragic in the media, that tell a darker side than the path Chris and I chose for Noah.  It does take a special person to look into a doctor's eyes as they are telling you the worst thing that you could ever imagine and say as you are holding hands and crying simultaneously with the person that helped you create this amazing person "it doesn't matter we want and love him anyway."

And if the big hand of fate quietly went about making me this student all these years ago so that I could handle it all now, then so be it.  Then I'm thankful that God wanted me to be as prepared as I could be, and rise up to do what needed to be done - then and now.   John Mackey, the founder of Whole Foods, stated "Life is short and… we are simply passing through here. We cannot stay. It is therefore essential that we find guides whom we can trust and who can help us discover and realize our higher purposes in life before it is too late."  Noah is my guide, and I now understand my higher purpose.


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

Wednesday, December 31, 2014

Gentle Grace: Goodbye to 2014

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I crave the gentle grace and promise for a better tomorrow - for me, for my child with special needs, for my family. 

With each passing year, I yearn for better days and a chance at finding help, love and kindness to help light up all the dark corners of this life's journey.  While most people are making New Year's Resolutions, I sit here looking back on how far we've come and am looking ahead to how further we still have to go.  I've learned long ago if you want to make God laugh tell him your plans for your life.   Resolutions are simply wishes in the wind.  I cling to hope, faith and the belief that all things are possible.

Here's looking back on 6 Years of Noah's Miracle:
(Remember to disable Noah's blog music on the right hand side before viewing)

A New Year’s Prayer
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.


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

Saturday, December 27, 2014

The Heart of Christmas 2014

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Without contest, this Christmas was the most challenging and difficult since Noah's birth.  I just kept getting hit with heavy news.  I never could catch my breath, never could recover before the next low blow hit me.  Makes it exceptionally hard to catch the spirit and place it in your heart when it's so broken.   I found myself lost.   Managed to make it through Noah's birthday, only to suffer more when something terrible happened Christmas Eve, never quite fully recovering Christmas Day.  But I did my best to move forward for my children - for Noah.  At the heart of everything I endure is for him.

Noah was so blessed to have such a beautiful and bright Christmas.   A group of women I've known since just before Noah's birth coordinated such wonderful gifts for him this year,  and The Butterfly Fund .  I don't know what I would have done without them.  I never could focus this holiday season, and they rescued me from not being able to provide the kind of Christmas I wanted to for Noah.   My mother I guess said it best, that I've simply been living in state of shock this entire month.   And the world certainly brought me to my knees on several occasions. The harder you get knocked down the harder it feels to get up on your feet each time.   If it wasn't for Noah I likely would never make the effort to stand again and keep going.

We are so excited about lots of new therapy and adaptive toys for Noah.  Now that he's older he needs so much more age-appropriate stimulation but toys that will do half the work for him.  Noah received a switch adapted Mr. Tumble toy that his speech therapist coordinated through a new local foundation called Santa's Little Hackers .  They are donation based and provide no-cost toys that have been custom switch adapted in a large workshop to reduce the cost of providing toys to children at Christmas.   Switch adapted toys are very expensive.   Double if not often five times the cost of a traditional toy you'd find at the store.  

Noah is in love with his adapted Mr. Tumble who will now talk to him by hitting a switch.  He also received a switch adapted domino train that will lay dominos and then knock them over, a teddy bear that will communicate with him by way of his daddy's cell phone, and a switch adapted race track.   Noah was also gifted with the Zoomer Dino/Dog toy that will allow him to give his toy his own commands by programming it into his Tobii Eye Gaze device, a talking book reader that will read any book to Noah.  And those who love Noah so dearly gifted him with soft tumble forms, great for helping him with his positioning on the floor and new clothes and socks to keep him warm until we can get past these winter months.

I wasn't even focused on anything I wanted this year, I've just been too overwhelmed to give myself any kind of thought.  But when I received a very special package from friends in the UK, it made me feel such warmth and love.  It arrived on Noah's birthday -  a set of pajamas, Christmas pudding and cake, British Potato Chips (my favorite in the whole world), teas, Christmas coffee, and shortbreads, Postman Pat for Luke, and Mr. Tumble for Noah... such a loving gift.  A comfort package from across the pond.  I lived on all those goodies Christmas Day.  Felt like the biggest long distance hug you could imagine.  That box was every bit The Heart of Christmas and a gift I will always remember.

I was overly eager to take down Christmas this year.  The tree and decorations came down as soon as it was over.  I know Noah loves the season but I needed to just clean it up and move forward.  I need an easier 2015.  I am not sure how much more God can expect me to endure.

Smiles from the threshold of the year to come,
Whispering 'it will be happier'...”
-Alfred Tennyson


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

Noah's 6th Birthday

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Noah loved his Mr. Tumble Birthday theme.   I just printed off a picture of Mr. Tumble from the Internet because no one here really knows who Mr. Tumble is.  I expected they'd have to make a little figurine out of marzipan but the figurine would have been $80... so we took the $4 digital cake photo option, which I have to say was perfect.  Noah beamed when he seen his cake.  I think this cake was his most favorite one yet, and the one he has responded most to.

We bought him a little adapted switch fan to allow him to blow out his own candle.  We positioned the fan close enough to the cake that when he hit his switch the fan blew out the candle for him.  Was great, except the lights on the fan quit working immediately.  And I still need to contact the vendor for an exchange or return.   But it did the job, and hopefully all future years Noah will be blowing out his own candles from now on - switch style and making some big wishes.

Noah grows increasingly more aware each year, and without a doubt knows that his birthday is all about him.  He cautiously guards all of his presents and new treasures to make sure his little brother doesn't lay not one finger on them, and if Luke even thinks about it, Noah squawks and squeals with anger and protest.   He was even protective of his polka-dotted balloons.  Didn't want to give an inch of sharing to Luke on his special day.

Noah got a lot of really great Mr. Tumble treasures that were imported the help with some special friends in the UK.  Makes it so hard to buy for a child that loves something that is UK specific.  Noah even got this precious custom made Mr. Tumble card.   Lots of memories to add to his hope chest.

When we asked Noah if someday he'd like to have a birthday party with other people who would come he got excited.  Maybe someday that will be in his future and we'll be able to invite friends - makes it hard that his birthday is so close to Christmas.  Maybe he needs like a mid-year birthday party in the summer.   I suppose when you have a life like Noah's everyday is a day to celebrate life....


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