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.

Tuesday, December 23, 2014

Perpetual Pain: The Appellate Decision

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December 22, 2014 at 6:55pm I received an email containing the Appellate decision regarding Noah's medical malpractice case.   The timing of this news even harder as it was the day I went into labor, with Noah's birthday today, and Christmas only 2 more days away.   This time of year is beyond hard to write about, I try to do my best to downplay and minimize the reality of what I really feel so as to not let on the true nature and pain of the suffering that I continually experience - the perpetual pain.  Compounded to all these feelings are things that are beyond my control. 

The Appellate Court's Decision:

In Noah's case this means that the jury's decision stands, and that the costs against us will simply be set for a hearing. 

I feel like Noah will never have the proper closure to what happened to him at birth.   It doesn't even matter what other's opinions may or may not be because I lived it.  I live, breathe, eat, sleep and wake up to the truth every single day.  I am haunted by it, knowing my son will never have justice.  I re-live it all on a regular basis, the sounds, what was said, the hospital smells, it never goes away. It's as fresh as the day it happened.  The memories never fade, and I carry this weight around me like a chain that grips my heart.

I dedicated nearly ten years of my life to a judicial system I believed in.   A system I never thought would fail my son.   I believed the truth would conquer all.  And the truth is more important to me than anyone could ever realize. 

I had to tell Chris about the news in the email.  I seen his body just gently fall, his shoulders collapse and tears well in his eyes.  He held his composure best he could so not as to deviate from being strong.   Luke still much to young to even understand what has been going on or what this all means, looked with deep concern as endless tears followed down my face.  I was in and out of sleep most of the night.  Luke awoke with a bad dream and for a brief instant I forgot and then remembered the news.   This pain in my head from the pressure of all my tears, shot down through my throat and past my heart and into my stomach.   How could this be?  This nightmare I cannot wake from.

We've endured putting Noah through invasive Court ordered genetic testing, faced an order to sedate Noah, who likely would not have survived sedation, for a MRI the day I was giving birth to his little brother, a theory that Noah suffered a brain injury weeks or days prior to birth (which is plastered all over the Internet in a Supreme Court ruling), only to get to trial and have them spring a new defense of merconium aspiration syndrome.   Tell me where the truth of what happened to Noah is in that paragraph... because it's not there.  It's not there at all.

It's in the fact that Noah wasn't timely delivered and was crying out for help and those cries were ignored until it was too late for Noah and he was born dead and then miraculously revived 13 minutes later.  His life would have been different.  He should be running around right now telling me how excited he is for his 6th birthday.   And this pain, this terrible heartache as a mother that I can't change what is.   I don't know how one recovers from this kind of brokenness.  How much pain is one person supposed to carry in their lifetime?

And all I can do is try to hide the tears from my children as I celebrate Noah's sixth birthday, and move forward the best I can with Christmas.


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

To My Son on His Birthday: Six Wishes

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Sweetest Noah,

You turn six today!   In many ways the time has gone so fast, in other ways it feels like things have stood still.  Although so many typical milestones have been skipped and may or may never come to be, with each passing year the sparkle in your soul, the pure joy in your laughter, the twinkle in those crystal blue eyes grows stronger and reminds me how happy you are to be here.   These are six wishes I have to celebrate the anniversary of your birth:

I wish for you to always experience immense joy
Remember to never let someone steal your happiness. Sometimes that is a hard thing to remember as you are met with challenges, cruel stares or unkind words.  But you must always remember the actions of others are no reflection on the person you were born to be -  the beautiful person I know you are.  Let your smile be your gift, let your tender laughter be the lesson that others need to learn from.   Most of all never let anything or anyone dull that incredible light that you've had since the day you were born.  Life is much too precious and much too short to not find your happiness.   Trust that we'll do our best to lead by example and show you all the true joys there is to being in this world.

May the world never harden your heart Life is full of challenges, problems to over come and flat out tremendously difficult moments.   You may find yourself questioning your self worth, frustrated as you realize that your little body doesn't do all you wish it could, and the desire for others to hear the voice that lives inside you.   You may hear the words won't, can't, and never... don't let those words become a part of your vocabulary.  Always seek to do good in the world, and know that just by being you, that you have the power to make a difference not only with your life but in the lives of others. 

That you meet challenges with determination and a belief you can conquer all things
The odds haven't been in your favor since you were born, as your parents we've endured countless predictions that were unfavorable.  But we never believed any of them.  Because we know that you are the leader of your own life.  No text book, no other person on this earth can determine the achievements and success you will find in your lifetime.   The journey is up to you, and this is your life's story to write.  We are so grateful that we get a front row seat.  We believe in you.

Show the world who you are
Never be embarrassed about the person you are or the challenges that you face.  You have a gift that most people never have the privilege of experiencing.  You are the purest form of goodness and love.  You have so much to teach others.  It is important to remember that you must give to receive, and the rewards will be great if you give of yourself with all your heart.   Never waiver from complete honesty and the truth no matter how painful either may be.  They will be the foundation and virtues that will help guide your way.

To always fight fairly
You will inevitably have to fight harder for injustices, rights, fairness and assistance in your lifetime.   Right now we're here to do all that for you, but there may come a time when you need to stand up for yourself.   And when that time comes, make sure you do it with with respect and compassion.  Stand up for what you believe in and never shy away from bringing attention to an injustice in your life or in the lives of others.  As the saying goes; you can catch more flies with honey than with vinegar.  

Remember where you came from
As a family we've struggled through a lot and continue to keep doing our best.  You come from some strong stock.   Know that it's in your genes to keep going no matter how hard things may get.  Never feel like you must measure up to someone else’s expectations.  And always remember my son, that Everyday holds the possibility of a miracle.

And my ‘one to grow on’ - I wish to be here to witness all of your life's journey and cheer you on as you go
Oh, Noah how I can remember the first time still to this day the first moment I laid eyes on you.   We've come so far, and have much further left to go.  I remain so humbly blessed that you are here with us.  Happy 6th Birthday.  I love you.


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

Sunday, December 21, 2014

The Box on the Doorstep

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Surrendering to the fact that you've done all you can do and can do no more is such a hard pill to swallow.  Especially so, for a special needs parent like myself, who dedicates every ounce of my being to helping my child and those like him.   The truth be told no matter how hard you fight that sometimes not all battles can be won.  In fact most can't be.  I often convince myself that I'll find another avenue, another road to pursue... a way around this giant obstacle that will lead me to the goal of helping Noah.   Sometimes I succeed.  But many times I don't.  

I have a tendency to fight as hard as I can for as long as I can, until I reach the end of my rope without further direction to go.  That usually results in a tremendously good cry and a strong prayer since there's nothing else to be done.   I've reached that stage with many things.  Most recently with the hopes of obtaining the Krabat Pilot Crawler for Noah.  I started that process in October of 2013.  Over a year ago.   I faced a Medicaid denial, a Medicaid Appeal.  A win after an Administrative Law Hearing, only to have Medicaid reverse my win.  Dragging out the process for several months.   I tried to fundraise, that didn't work out well.  It's hard to get people to understand that something of this nature is truly needed for your child and to help further his personal growth, independence and quality of life.   Hunted multiple foundations, with most not even responding at all. 

I came to that inevitable point where it was time for that good cry and that strong prayer.  Tried as hard as I could and I failed.  But out of the blue, completely unexpectedly, Wheelchairs4Kids, a foundation that assists children with adaptive equipment responded to my application and said they assist Noah with the crawler.   They contacted many local agencies within our area who helped contribute to the gift of helping Noah.  Many whom I'll never even know.  So many people coming together for one little boy to gift him with the chance to crawl. 

When all hope was lost... the Krabat Pilot became a reality.

In a box it sat at our front door.

Can you imagine the intensity of that feeling?  Something that you had known your child needed but that you couldn't find a way to provide?  To have fought so hard and resigned yourself to accepting it was never going to happen?  And then to see that box.  That very box that contained that one thing that you knew would make all the difference?

It's like a feeling of a combination of all the Magic of Christmas and all the love God can provide all tied up together.  Your tears turn from those of sorrowful nature to complete and utter gratefulness.  

And today, Noah crawled with the assistance of the Krabat Pilot. 

His motivation, tremendous drive, and desire to move propelled him forward.  Just as I imagined it to be... just as I knew it would be.  Something I seen only in dreams became real.

“So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable." Christopher Reeve


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

Tuesday, December 16, 2014

Reinventing the Holidays

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When looking back on your own family traditions there is a natural desire to pass them down to the next generation.  We'd put up the Christmas tree on Thanksgiving or sometimes the day after if Dad thought it would seriously stress out Mom while cooking dinner.   Each child would be allowed to open one gift on Christmas Eve.  My paternal grandparents would literally load us up with full-sized varieties of Hershey candy bars to give us a sugar rush for the next twenty years.  We'd do the occasional cookie baking and hot chocolates, egg nog and cheer.  I'd spend time playing new Christmas songs I learned on the piano each year. We'd be up hours before the sun, sometimes the over-eager little me even up at midnight trying to pry my parents out of slumber in order to go through what Santa had left.  All the while my mother convincing me that I must have interrupted Santa and if I kindly went back to sleep Santa would come back and leave more.  To my dismay there wasn't any more in the morning than there was at midnight.   Santa would leave stacks of unwrapped toys one section of the room was for me, one section of the room for my little brother.  In our stockings we always had one giant apple and one giant orange with a single chestnut for good luck.

Santa was always good to me, and filled my childhood years with magic and love.   I had hoped to pass down so many of my memories and the way we did things when I was a child, because it was such a beautiful time in my life.  But then Noah came along and changed everything.  The way we do the holidays entirely.  

We didn't get home with Noah until January 9th, 2009.  All those years ago in a blog so fresh and new I wrote: 

The day Noah was born his daddy bought him an outfit in the hospital store that says "Special Holiday Delivery"  and matching socks with holly.  We plan to put him in it tomorrow, and celebrate with a late Christmas.  We're going to open presents together - the three of us!  I just pray this feeling lasts, and that Noah comes home to stay for years to come.   

Our First Christmas together celebrated January 9, 2009
Noah still heavily medicated was in and out of sleep when we did our make-up Christmas.  But I remember it just like yesterday, holding him in my arms in my pajamas the three of us by the Christmas tree.  Things got harder the second year.   Noah still was very much a distraught little baby.  He cried often and frequently nothing made him happy.  I sure tried.  I tried everything.  Realizing that things were overwhelming for him, there was no ability to attend family gatherings, and we decided we were not able to leave the comforts or the safety of our own home.   A few family members visited us, but only for brief amounts of time in order to ensure Noah wasn't overwhelmed.   By the third year we started to realize that some parts of Christmas were actually one of the few things that seemed to calm and comfort Noah.  The tree went up early, lights, songs, Christmas movies.  Whatever it took to keep him happy.   But how we went about the holidays still was different from how I ever dreamed it to be.
My Special Delivery and the Best Gift I've Ever Received
I longed for what felt like broken childhood traditions.  I couldn't really give Noah an apple or an orange, he couldn't eat solid foods, he couldn't unwrap his own gifts, he couldn't even get me up in the middle of the night to say Santa had come.  I wanted it, I still to a large degree want it.  But I'm learning that I can reinvent the holidays with a child that has special needs and that it is okay to start new traditions that fit his needs and us as a family.

Instead of an apple and an orange, Noah gets cotton candy and fast dissolving chocolates.  We put the Christmas tree up weeks before Thanksgiving even hits.  He has his trains, switch toys and Christmas books and movies to entertain him.  And allow him the freedom to make a mess of the ribbons and essentially un-decorate the lower branches of the tree on a regular basis.

Each year we seem to incorporate something new to grow as Noah grows with his abilities, likes and dislikes.  And are doing a night before Christmas chest for both the boys this year.  I found these cute little chests at Hobby Lobby, and I stuffed them with all the essentials you need the night before Christmas; a set of holiday pajamas, Christmas movies, coloring books, reading books, sensory activities, fast dissolving chocolate Santa and an apple juice box.  I painted each child's name in nail polish on the boxes since it was all I had on hand.  I made it work and poured a lot of love into each of them.  Making new memories for me and for the boys.

I'm finding if I can find new ways to make the holidays fun and work for Noah and us as a family then it doesn't matter the traditions that either Chris or I had as children.  It's about our children not what necessarily was a part of our childhood, but what our children will remember most about theirs.  And by reinventing the holidays I'm building memories they can both look back on and say remember when...


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

Saturday, December 13, 2014

Fire Station Santa

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We received a beautiful invite this year from our friends at North Metro Fire Rescue District to have Noah and his little brother stop by the fire house to visit with Santa and sit in the fire trucks.  This was the first year we had ever attempted to visit Santa outside of the comforts of our home since Noah was born.  Santa was easier at home due to Noah being medically fragile and his overwhelming sensory challenges.   But somehow I knew that this would work because Noah is so loved by North Metro, and they are such a tender and loving crew.  There were less than ten children there, which was good for Noah.  He only displayed his sensory gag reflex twice and came out of it both times without vomiting, which is a huge step for him. 

He loved being lifted up to sit on his daddy's lap on the fire truck, and of course had plenty to tell Santa.   Those two I think were sharing secrets.   Santa even knows a multitude a bird sounds and can talk like Daffy Duck!  Who knew all these years that Santa was so incredibly talented!  Noah thought that was simply the best.   This was the first year where Luke wasn't apprehensive of Santa, however he wasn't about to sit on his lap.  Standing to tell Santa he wanted an airplane and continually plating and serving him individual cookies was how he wanted to work it this year.   Luke also did his best to comfort and console another child who was upset that Rudolph couldn't go home with them.   Traits I know stem from growing up with a severely disabled older brother that often needs extra comforting and care. 

Seeing Santa at the fire station was simply perfect.  It was a small enough event to make Noah feel comfortable and big enough to give Luke an opportunity to socialize, play and engage in Christmas crafts with other children his age.  It felt so relaxing and comforting.  The exact kind of feeling that you want to capture at Christmas in put in your pocket.  The true spirit of Christmas. 

I treasure moments like that, especially this time of year.  Those are the parts that bring you back to the center of what matters and puts that sparkle in your heart as you watch the gleam in your children's eyes.  I'm hoping we make this a yearly tradition and are able to see Santa at the Fire Station each year. 

May you have the gladness of Christmas which is hope; the spirit of Christmas which is peace; the heart of Christmas which is love. Ada V. Hendricks


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

Thursday, December 11, 2014

Tis the Season

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Seems like this year our holiday stress just keeps mounting.  Generally the holidays can be challenging for us anyway, trying to juggle gifts with very little financial resources, and then there is always that anniversary of Noah's birth and the remembrance of receiving that call in my hosptial room that Noah likely wouldn't survive Christmas Day and needed a blood plasma transfusion to help him keep fighting, all the while a priest placing a rosary in my hand and curling my fingers around to hold it.   People tell you to never look backwards, but I think it's human nature to grieve periodically especially during those same times of year.  Christmas unfortunately just is my time when I associate things with a tragic event our lives that changed the course of the rest of our lives.   The unhealthy part would be if I stayed in that constant state of sadness, and I don't.  So I occasionally give myself permission to say it's okay to cry about how it all started, but it's also okay to appreciate the miracle of Noah's life and how far we've worked together as a family to get where we are today.   It's a balance.  I try staying busy and investing my time in others helps to facilitate that I don't dwell and devote an abundance of time on remembering our holiday start as a family.

And while I balance all of those feelings and memories it seems this year I get an added bonus of stress.   Noah's bathroom continues to be up in the air.  Just when I think I have things sorted and his caseworker confirms all has a green light, I receive an email saying that even though Noah got a Medicaid approval for his modified bathroom, that they don't feel the contractor can adequately have it finished by the end of the year and therefore are pulling Noah's funding for it this year... thereby giving the state nearly 36K of Noah's money to keep.  Feels like a premeditated game they play.  Pulling out all the stops they can to say no, even with a Medicaid win.  Telling me I'll have to pursue this in the new year with a new pot of money for Noah, which means that I will have to continue to do without other services two years in a row.   Upon calling two supervisors, their story has somewhat changed but not entirely.  They say that they may partially fund this project with this year's money and may partially fund it with next year's money.  Still not really how I think this should happen and a way to simply pocket Noah's funds. 

Knowing how this all works I wouldn't be surprised if they all receive an end of year bonus for "conserving the state's funds" as a caseworker so delicately put it to me over the summer when I faced our first denial for the bathroom modification.  Seems to be everyone has an agenda and helping Noah isn't really at the top of the list.  The contractor assures me he'll work feverishly in the next few weeks to get as far as possible, yet I have no trust with the state whatsoever.  I wouldn't put them past them to allow the contractor to do all this work and then say yep we're still keeping this year's money and it has to be paid out with next year's pot.  Leaving Noah in the lurch without homemaking services, respite,  a much needed stair lift, therapy costs, and augmentative communication assistance.  Apparently the state is now offering diaper wipes in the Waiver program, as that was supposed to be my consolation prize - just buy some wipes with the money we plan to take from you this year - really adding insult to injury as we all know that I can't take on 36K in diaper wipes.   My only saving grace if I can manage to navigate out of this, is that God may have sent me a way to provide for the $4,163 that we're short.  It may require a bit of help from our loving friends, but I'm hopeful and praying as God may have just sent us a blessing.

But the State isn't my only battle.  I filed a formal complaint with Noah's DME Monday for holding a piece of equipment ransom after a mutual agreement and a signed promissory note that they'd deliver it to me faster than waiting on Medicaid approval because Noah needed it.  They too lied and went back on promises now changing the rules.  Over two months later and they have had the item in their possession since November 11th, but won't deliver it.  They still want to ask Medicaid for approval and haven't even yet submitted the request for Noah's doctor to sign off on it, let alone sent it to the state for consideration, meaning likely another three months or more from now.  Besides that fact they were going to send the request to a doctor he hasn't seen for over two years.   They are just a disorganized mess that doesn't have their act together, not to mention they are highly unprofessional and don't even have the courtesy to return phone calls no matter how many messages I leave.   Noah continues to be without even though I was promised this item in less than six weeks.   Even after filing a formal complaint I had to call back to corporate headquarters again because they still failed to address my issue within the promised 48 hours.  And now the regional manager's voice mail says she's gone through the end of the week.  Convenient.  I have high doubts I will have resolution of this before Christmas, and it makes my blood boil because I'm so over everyone's lies. 

And the icing on the cake I suppose is SSI's notification that we're being audited on December 18th.  Always so nice of them to pick the date and time for you.  Not the kind of holiday greetings one would hope to receive in the mail.  I kind of anticipate how it's already going to go.  Even though I provide them with Chris's pay stubs faithfully by certified mail (since they like to deny receipt) each month, they'll say they didn't hold onto them or copy them and demand a whole year's worth again, even though they've seen them and recorded them monthly.  They'll go over the lack of all assets we have, they'll give me two weeks or less to send in all of the pay stubs again.  Threaten to withhold Noah's benefits if I fail to jump so high before Christmas.   I'll be forced to go into overdrive and hunt them in the basement again, copy them again, and send it all certified again.   They may send me a letter saying things remain in place, or they may send me a letter saying they messed up and failed to properly notate something and demand an overpayment for their error. 

And in the middle of all this I'm trying to prepare for Noah's 6th birthday, find a moment to teach Luke how to make holiday cookies and have the boys build a gingerbread train together, wrap presents, grocery shop, avoid the snow with a wheelchair and keep going like the true trooper that everyone thinks I can be.  Merry Christmas in true special needs style.


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

Monday, December 8, 2014

Around Every Corner

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Like with most good news that comes our way.  It's always slightly premature for me to celebrate.  Because around every corner there is essentially a new problem.  Noah's modified bathroom request that was approved under the wire of the end-of-year deadline is short more funds than I actually realized.  Now the amount that I need is $4,163.00 - the amount short that Medicaid will not fund.  Originally I thought we were looking at less than maybe half that.   But with all things there is always a catch.  

Sometimes you wonder if people think just because you have a child with special needs that it automatically means you are financially loaded.  Yep, I just have all this extra cash laying around to pay out of pocket for all of his 8 "alternative" therapies not covered by Medicaid, or his supplies that they deem a non-medical necessity, or equipment that continually gets denied.  Everyone must think I'm wearing a sign around my neck that says "Cash Cow..." Or they just assume that the community is taking care of us with donations and fundraising.  None of which is the case.

We can't keep up.  We're trying.  We've been treading dangerous waters for years now.  While I'm certainly not looking for hand-outs in life I sure could use a touch of fairness.   There is no reason why anything dealing with anything special needs or disability related has to come with these types of price tags.  Makes you feel like you're simply the pray.  An easy mark.  A desperate target.   And there are so many onion layers to all this.

On one hand here is all that Noah needs for a quality of life and daily living needs.   On the other hand no money to fulfill those needs.   This is so different than having a typical child that you can't afford ballet or soccer for... this is what he needs to live.  Regardless, of the fact that I still can't convince some people that having a child with Noah's level of needs is not a luxury.   He will be six in a matter of weeks, he isn't getting any smaller his needs continue to grow with him.  I'm facing hoyer lifts, stair lifts, additional home ramps to get him into the garage and even allow him access to his own backyard.  He is outgrowing equipment that I'll have to re-request.  And therapies aren't getting any cheaper.   And I'm trying to keep up with van payments that are more than a fancy sports car.

I'm craving someone to be authentic with me.  Be honest and mean it.  Want to help me without an agenda.   Be there to simply hold my hand, hug me, and say you know I'm going to help your son because it's the right thing to do. Not because he's a dollar sign.  Not because he's a statistic, or a number in your system.   Play by all the rules and just cut me some slack in an already heavy set of tragic circumstances.   God please send me those people.  I'm growing just so weary. 


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

Tuesday, December 2, 2014

Noah's Miracle: Holiday Playpak by Firefly Giveaway!

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Firefly has launched two great new products.  To celebrate the holiday season, Noah's Miracle is giving away a Playpak to one of our lucky readers!

The Playpak is Packed with Activities!
This lightweight little bag contains an entire activity center. Inside you will find rolls, wedges and supports (designed by clinical experts) that stick together in dozens of ways and let your child tackle different develop mental postures.

The Playpak also comes with a handy online therapy program, featuring advice and easy-to-use instructions that will show you how to use each clever little piece to create different sitting and lying positions, as well as how to preform all the recommended developmental games with your child. 

The Playpak is also light, handy and can travel anywhere!  It is also easy to store, hang and is very durable and able to handle squishing, squashing and bashing. 

Features and Benefits:
1) Lightweight, foldable bag/mat design 

2) Easily adjustable shoulder strap
3) Five handy storage pockets
4) Five colorful postural support elements
5) Non-slip grip on base of bag
6) Stylish, fun and easy to use
7) Durable, machine washable materials
8) Colorful loops for attaching favorite toys
9) Super sticky velcro strips for added stability
10) Soft velcro cloud

Firefly is committed to family participation and the Playpak lets you play a bigger part in your child’s therapy.  Research shows early intervention programs that allow therapists and parents to work together, like Playpak does, make a bigger impact on a child’s development. The Playpak online guide will show you how to ‘mix and match’ Playpak components in three key therapeutic positions, which form the basis for later abilities - back lying, tummy lying and floor sitting. 

Check out this amazing video of Noah's little friend Charlotte using the Playpak.  It will fill your heart with joy: (don't forget to disable Noah's blog music on the right hand side of his page prior to viewing)

1 winner will be chosen Saturday, December 6th, 2014!

The details to enter are below!  

Never Miss an Update from Firefly! 
'Click here' to keep up to date with updates from Firefly

Happy Holidays!  
Thank you for being a reader of our journey with Noah.

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

Monday, December 1, 2014

When You Don't Know What is Wrong

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Noah has been battling these strange spots which have been appearing periodically for about two months.   They look much like inflamed mosquito bites that often range in size from a pea to a quarter.  At first I thought that maybe we had a spider on the lose, so in true compulsive special needs mother style, I stripped Noah's room from top to bottom, washed his bedding, sanitized his sleep-safe mattress, cleaned the baseboards, washed his curtains, vacuumed out the heating vents... even washed his walls.  Went mad crazy cleaning in his room for six hours.  Turned up nothing.  Not even so much as a cobweb.  Nothing.  

The spots kept appearing. 

Ruling out the fact that we were now in fall months and the likelihood that these were bug bites were slim to none pushed us out the door to the doctor.   Noah was diagnosed with an ear infection and his spots were believed to be a symptom of his infection.   A course of typical ten day antibiotics cleared up his ears and his spots disappeared within a few days.   All seemed okay.  We traveled, took a break from therapy, all seemed well. 

Until the spots reappeared again.

I was trying to figure out what on earth was causing it.   Off to the doctor we went again as my assumption was that maybe we hadn't knocked out his ear infection and that it had returned.  I was rather suspicious that maybe Noah had received prescription that wasn't any good.   After Noah finished his ten day course of antibiotics it is standard for me to separate the label from the bottle and shred Noah's medical label information.  However, when I pealed Noah's label off the medication I realized that the medication had previously been issued to another child a month earlier.   I called King Soopers, where this particular prescription was filled, to be told that the other child couldn't afford the medication and it is their policy not to destroy the medication to preserve costs, and therefore it is issued to the next person, which happened to be Noah thirty days later.   They said their only legal responsibility is to block out the name only of the person it was issued to before with a black marker under HIPAA (even though i this case I could easily read the prior patient's name on the prescription.)    This didn't make me feel confident at all not knowing if the prescription Noah received was even expired prior to him receiving it. 
Prescription not originally belonging to Noah
Yet a second doctor's visit turned up a good diagnosis on his ears.   We then moved onto the diagnosis of a contact allergy.  We went over all the elements Noah has been exposed to.  No changes in food, no changes in soaps or laundry detergents, we went over where was at and what he has been doing.  Until we got to discussing his therapies.

For months his pool therapist has been experiencing skin difficulties which she tells me is from a combination of the chlorine and being in the pool all the time with children and a sensitivity to antibacterial soaps.   It's become so severe that she now wears gloves in the pool with a rubber band tied at the wrist.   Noah's spot looked like they could be classic choline rash.   And have been occurring within twenty-four hours after pool therapy. 

We are now on a thirty-day break from pool therapy and mixing two allergy drugs to assist Noah in rid of his potential contact allergy to the chlorine exposure.   Warm water therapy happens to be one of Noah's most beneficial and favorite therapies, and I'm not sure what is different about the pool all of a sudden for him, as he's been doing this now since he was about two years old, and up until now hasn't experienced any problems.  He showers immediately after therapy, yet it must be absorbing into his body too quickly.

Between the mixture of oral allergy medication and hydrocosine cream, Noah has greatly improved.   I'm still trying to determine if we're still dealing with a chlorine allergy or if this is something else.  Noah's sleep patterns have been particularly challenging lately which may or may not be an indication that something else is bothering him.  When you don't know what is wrong it puts your mind on overload as you go over any possible explanation for any of it.   Noah has been particularly irritable these last few days, which I can't tell is simply a symptom of cabin fever or something else, although he appears well otherwise.  But he's been hard to keep happy. 

But I can't help but have these feelings that I really want nothing more than a good cry because I'm so ultimately frustrated that I don't know what is ever wrong. The constant guessing game feels endless.  And makes me feel entirely helpless at times to help him. 

The kind of helpless feeling when everything you're used to has been ripped away. Like there's no more gravity, and I'm left to drift in outer space with no idea where I'm going.” Haruki Murakami


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

Thursday, November 20, 2014

Finding a Soft Place to Fall

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We're supposed to be strong and hopeful.  Advocates, fighters and voices for our children with special needs.  We are expected to have courage as we watch our children struggle.   It is assumed we have broad shoulders and are able to let painful stares and cruel words roll off our back without a second thought.   Believed that we are brave and able to withhold concerns about our children not meeting milestones, struggling with sensory issues, or not sleeping through the night, and fearing for the future.  Strong, resilient, faithful, and focused.  Never feeling discouraged or overwhelmed with all that life throws our way.  Because we can handle anything in our path.

But the truth being; we all need a safe place to fall.

The people I have there for me I can count on one hand, and I don't even need to use all five fingers.  I mean truly be there for me if I had a crisis in the night and needed someone to call to watch my typical child while taking my child with special needs to the ER, those that I would call if I had a flat tire and was stranded, someone I could call to ask me to bring me a gallon of milk.  Someone just to listen about my heartache, my hopes and dreams for my child.  And I'm not the exception but rather the norm when you have a child with special needs.  Our support is significantly decreased, even more so depending upon the level of severity of your child's condition.

Sometimes you think someone is going to be your safe place to fall, but then you find yourself falling hard, looking up realizing the person you thought would catch you couldn't do it.  And for a moment it hurts.  It hurts because you needed someone in a really difficult moment.  Maybe that was just to say today is hard.  Or gosh, I'm so worried about my child because of x, y and z.   But they were too busy, or couldn't make time, or went about their lives not even looking to realize you had been left behind. 

For a moment you might abandon the idea of ever having a safe place to fall.  That unconditional person or group of people in your life that is there for you, whom you can say anything to without an ounce of judgment cast in your direction.  That hears you, that holds your hand, that offers you a hug even though there is nothing else they can do.  A person who genuinely cares about you and the well-being of your family and your child with special needs.  And if need be drop what they were doing to be there for you in a time of need.

That safe place to fall is critical for refueling a special needs parent, to remind them when all feels lost that they're not alone, that they don't have to carry the weight of this journey all alone.

When the world gives us harsh cold winds our true friends, like our favorite blanket, wraps us up in warmth, comfort and a soft place in which to fall. Anjie Henley


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

Tuesday, November 18, 2014

Beyond Barriers

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Just under the wire,  I sit here with a letter from the state approving a long fought for bathroom modification.   Truly a miracle in it's own right.  With less than sixty days until the end of the year, and one of the bidding contractors basically disappearing off the end of the earth and taking Noah's file with him.  Leaving us unable to submit a revised bid as the State requested.   This required his county caseworker to submit a letter explaining the nature of why we couldn't comply with their request. 

I thought immediately - game over for Noah.

There is no way we'd get a response back from Medicaid by the end of the year, and when we did they'd surely say you're up a creek because one of the bidding contractors quit their company and stole Noah's file, and even if they did say yes in the eleventh hour how can you construct a handicapped accessible bathroom by the end of the year?  

But I continued to pray and never lose hope.  And the impossible happened.  

There are still some challenges I'm facing, like Medicaid not approving the entire project, leaving me roughly a little over $2,000 short.   While his caseworker plans to ask the state to re-consider spotting Noah an additional $2,000 plus,  I'm kind of thinking that they may likely be willing to offer no more to Noah, even though he hasn't maxed his waiver funding this year.   This means right now what they have asked the chosen contractor to do is modify his bid to eliminate features Noah needs.   Painful thought for me.

I don't know what that will look like.  Maybe that means I have to forfeit a changing table and lay him on the floor, maybe that means no heat lamps because he can't regulate his own temperature well due to the nature of his brain injury.   We already are doing without creature comforts like a simple mirror over a sink so Noah can look at himself, or a height adjusted caregiver sink, no guard railing, all features denied by Medicaid in their final approval of the project.

I'd like to believe they'd step forward so I wouldn't have to cut additional features from this bathroom modification but my gut feeling is I very well could be stuck.   Makes me nervous, but like most things it's out of my control and in the hands of someone else. 

That to a large degree is the hardest part is having to rely on others for the care and help your child needs.  You are at their mercy for better or for worse.   I'm trying to celebrate the simple fact that we made it this far, but recognize I still have more hurdles to go.  And as you may have guessed this will mean construction starts during the holiday season. 

I am also bummed about a situation involving Noah's invitation to Thanksgiving dinner this year compliments of Zolo's Southwestern Grill coordinated by his county services for special needs families like ours.   You may remember we were invited and attended last year and had wonderful time.  This year we decided to go again and invite my older brother's family as they permit you to invite your family up to twelve members.  I didn't see an invite come in the mail or through email as was done last year so I contacted his caseworker who apologized I was never notified.  His caseworker sent me an email with registration on November 3rd and I registered that day.  Two days later I was notified that we were placed on a wait list with 121 people in front of us.  I was later told the event filled up on the first day of registration which was on November 1st.   When I called obviously upset that I didn't have even a fighting chance as I was never timely notified about the event, I was told they were sorry and that Noah and others had been lost in their data base.   Thereby causing Noah to miss an opportunity because of their clerical error.  

I highly doubt we'll get off the wait list, even harder as we haven't been able to get together as a family at the holidays due to Noah's sensory challenges for many years and when you become a special needs parent you feel you could very well likely win the very worst host award.   Your priorities are so focused on your child that you could easily burn the turkey into brittle bits and forget to buy a Christmas ham.   I feel especially bad having extended the invite not knowing that Noah wouldn't make the cut, due to us being untimely notified.  While I am trying to remain positive that somehow we'll find a way off that 121 person wait list, realistically I know that it is unlikely.   Coordinating Plan B at another restaurant feels like it's in my future.

I'm hurt about it, not jut because I was hoping to make this a family tradition year after year, but because Noah missed an opportunity he otherwise shouldn't have.  Had I been properly and fairly notified would I could have made sure we registered on the first day.   And it's Thanksgiving this time, but what if next time I'm not told about something else... just conveniently out of a database.  Another opportunity for Noah lost.  Opportunities that we have become dependent on as our only source of help.

Three things that never come back: the spent arrow; the spoken word; the lost opportunity. 
William George Plunkett


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

Monday, November 10, 2014

AIPAC Conference, Dallas 2014: Winspear Opera House

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Lighted Trees Outside Winspear Opera House

Our last event was the AIPAC Dinner at the Winspear Opera House.   Lighted trees lit up the Opera House grounds, reflecting beautifully on water that sat right in front.  Was a really beautiful effect at night.  Almost magical like a evening painting that twinkled when you looked at it.    Noah was excited that he was again out on the town.   He was certainly enjoying seeing and experiencing new things.

We found the first available table for dinner in a backroom.   I think we actually got kind of lucky because I think it was the only buffet station I could find that had corn dogs and sandwiches for Luke.   And this buffet and an incredible assortment of sushi and Asian cuisine.  First time I've eaten ceviche!  I was expanding my horizons.   It was nice to engage in conversation with AIPAC members that shared a table with us. 

I wandered about collecting plates of of food and drinks for my little troop and bringing it back to the table.  One of the bar tenders made a lovely comment about how amazing the group was that she was serving.   She said she has served a lot of different types of people over the years and that she was in awe of how friendly and nice everyone was.  I told her I agreed.  She asked about my connection to AIPAC and I explained I was simply an invited guest speaker discussing my child with special needs.  She began to cry.  She said she was having a really hard day, her power had been shut off, and as a result only got 2 trick or treaters on Halloween who said they'd pray for her.   She felt bad for having those feelings of struggling because she assumed I had it worse.  Little did she realize that all of us are fighting different battles, struggling in different ways.   I gave her a hug.  She was sweet bar tender.  Sometimes people are placed in our path for a reason, and sometimes we are that reason for another person.   I hope I was able to comfort her and reassure her that things will get better.  We just have to keep believing. 

We all made our way into the Opera House to watch the evening's presenters.  We had hoped to stay for the entire session but the boys were ready for bed and we missed the last half hour.   The parts that I was able to watch hit home, as a speaker said "by myself I'm an advocate, but together we are a movement."  And another speaker saying that "one person can't do it alone."
LED lighting at the Winspear Opera House - actually retracts to look like stars in the ceiling

There are times in my life where I want to think that one person can make a difference - that I can be that one person to bring about change, to fix the wrongs, to leave this world a better place for Noah and those like him before I die.   I feel sometimes there nearly isn't enough time for me to do it all... my mind wanders to changing facilities in a Space to Change Campaign giving Noah and others like him the dignity of being changed properly in public restrooms and changing facilities, I dream of a world that has handicapped accessible friendly airplanes that simply allow an individual to remain in their transit ready wheelchair with tie downs like they'd have in handicapped accessible vehicles, that I could fix all the problems with SSI and Medicaid, and Medicaid Waiver programs that promise help but then find ways of denying you that promised help - that things like the ABLE Act would help families like us that are barely financially making it by and have no resources to be able to save for our disabled child's future leaving them in the lurch of the State's care into adulthood.   There are so many things I want... that I need to change.  It feels endless.  I see so many thing that need to be fixed. 
Noah in awe of the ceiling light and the changing colors

But I can't do it alone, I know that.  Those speakers are right.   I might be able to plant a seed, but I can't make it grow without help.  The impact I may make might not be on a grand scale.  But it's certainly not for a lack of drive and passion. 

We headed home for our last evening.  Noah and Luke both a tiny bit sad because they understood packing meant that our time in Dallas was coming to an end.  Upon arriving at the airport we were told again that our luggage was too heavy.  Six pounds too heavy.  Really no heavier than when we left.  I once again explained it was Noah's supplies needed for traveling.  Once again charged $25 a bag.   American Airlines had separated us and spread our seats out on the plane.  I told the attendant that wouldn't work for us as we needed to all remain seated together to help care for Noah.  She looked at him and laughed saying "It takes all of you to care for a baby?" 

I was like really?  This is how Dallas is going to end? Being on this incredible weekend high of positive experiences and the attendant is going to call my severely disabled, 5 1/2 year old child a baby?  I wanted to correct her, but her body language was one of being in charge and exercising her power for better or for worse.  She finally agreed to seat us all together, but purposefully put us in the last row of the airplane.   We carried two car seats over more than 30 rows to the back of the plane, cradling Noah in my arms.  When we got to our seats I immediately knew we were going to have difficulties getting home.  We were seated right on the engines of the plane.  No view for Noah to see out, and the noise from the engines were going to be louder than elsewhere on the plane.  There was nothing I could do, we had to make the best of it. 

And in true Noah sensory style he threw up multiple times not being able to tell time and space and see out, with the overwhelming hum of the engines.  I was glad once we landed and were able to get him off the plane,  although being last to get off also caused him to throw up yet again.   The next time we fly I'm certainly going to have to re-evaluate seating... and there is no way we're going to be able to sit on the engines with Noah in the future.   I'm still trying to wrap my head around how we'll even travel with a service dog that is due to join the family sometime next year with as small as some of the leg room in these smaller planes are.

You would think that the plane ride home would be our only challenge of the trip, but it turns out something wet had soaked one of our pieces of luggage.  The piece that had all of the nicest clothing we likely owned and Noah's Upsee.  We assumed it was just the outside of the luggage but we didn't really know until we arrived home and opened it and a TSA inspection notice lay on top.  I'm still not sure what liquid got on it.  It certainly wasn't water as it stained our brand new luggage and created deep black oil-like stains on our clothing.  And our clothing was in plastic laundry bags before TSA fondled our possessions.  Five washes later, and I can't get it out.  Everything in that bag is really toast.   And I'm not sure what do to about Noah's Upsee - especially because I don' even know what's on it. 

I of course called American Airlines who says it's not their fault that if there was a TSA notice it becomes their fault.  TSA says doesn't matter if we went through it - it's American Airline's fault that it's wet.  So I've got two agencies pointing the finger at each other.  The claims form is truly ridiculous to fill out for TSA, and according to online research you could be fighting with TSA for six months to a year.  I have so many battles in a day from SSI to Medicaid, to denials for Noah's equipment and therapy that I'm not sure I have another fight in me right now.  And I am trying to look at it from the perspective that I gained so much on this trip that in the end I maybe I should just accept the loss and move forward.  

I must remember to count only our blessings and not our problems.

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