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.