Wednesday, September 30, 2015

How It Should Have Been

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Most times I'm able to live in the present - meaning I get up and see Noah and our lives with him for what it is, and how it is.  I breathe in the beauty of it, and exhale the pain all at the same time.  Nearly seven years later after Noah's catastrophic birth injury, I cope and manage in all the same ways that most parents do when they have been dealt this type of life altering hand.  But occasionally, there is that moment when you see something that triggers a that glimpse into how your live would have been... how it could have been, how it should have been with better labor and delivery care.   That's the hard part, because Noah's life had the chance to be very different.  This didn't have to happen to him.  And like thousands of other babies who suffer the same outcome, it didn't have to happen to them either.  

I was in a store parking lot, on the phone but put on hold dealing with the bank because they reported my card as stolen by mistake which left me with no form of payment for my purchase until they reversed and corrected their error.  While on hold, clearly annoyed that the bank left me in a pickle when by reporting my card stolen when I was holding it my hands I seen a family walking across the parking lot.  Hand in hand, and two boys that resembled the ages of Noah and Luke.  I think it was the walking holding hands part that got me the most - no, I know it was that part.  Sure I can hold Noah's hand in his wheelchair, but not side by side walking, I'm pushing from behind.   It isn't how this was supposed to go, we should be just like that family holding hands walking side by side into a store - together.   Noah should be talking and running, playing and learning to ride a bike without training wheels.  All these things.  All these precious things that were stolen from him. 

Suddenly the bank reporting my card stolen didn't matter so much - although someone did come back on the on the line and did indeed fix it.  Perhaps maybe it was God's way of putting things in perspective so I shifted my focus from being so annoyed.  In recent times I've been going back to that place in time a lot - Noah's birth and the events that proceeded afterwards in relation to assisting with future news and video publications surrounding the issues of what families face when it comes to pursuing the causation and root of an underlying medical injury.  I always go back to it on my own anyway periodically even when I'm not openly discussing everything with others -  it's just been necessary to do it a bit more frequently than usual I suppose. 

And I recognize to a large degree I will never in my lifetime possess the truth about Noah's birth.  Haunting still that I have no memory of the moment he was born.  And I do try.  I try often, to fight remembrance despite anesthesia.  And I have no one to tell me even, since Noah's daddy was barred by the hospital from being with me during delivery.  All I have is this dream of those two children in Eskimo hooded snowsuits making snow angels side by side.  Just a dream.  The only thing I can remember about being asleep. My soul feels like I'm missing time.  I don't know if that's how everyone feels or not that has undergone surgery, or if it's just me because I associate a traumatic experience along with it.  But, it's is a sad thing not to have a memory of the moment your first child was born, you can't help but want to remember.   I wish that something could recover that lost time, I'd likely even try hypnotism if I thought it could work.  I want to know so badly.

A journalist recently asked me the question "where do you go from here."  I don't know that I even gave the best answer to that.  In some ways you're a bit stuck in this place of not knowing.  I'd like to believe that there will always be a greater purpose for my pain, and that the only thing left now is to help others so they don't have to follow in my footsteps.  To make things better for those who inevitably will come after me, new babies, new moms and dads, new tragedies unfolding.  Some of the best advocates I've ever known have risen from a place of great despair and crushing heartache and grief, and I really should be no exception to that.   Strong mentors and spiritual guides have also learned lessons to pass onto others by the roads and paths life has given them.  Exposure of the truth has the potential to open doors to change with this discussion and exposing how families are treated when there is an adverse medical outcome.  Noah's story deserves to be told.  And I'm so grateful that someone wants to acknowledge and shed light on what happened to us and what we underwent was real. 

Will it all ever stop me from every now and again seeing a picture of how it should have been?  Probably not.  But, maybe my voice will someday help another mom from ever having to sit in a parking lot staring at a picture of what she believed her family's life would be like.


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

Tuesday, September 22, 2015

Your Wings Were Ready, But My Heart Was Not...

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In the early morning of September 18, 2015, my dearest Aunt Rhonda was called home to heaven.  Although she had been fighting an fierce battle with cancer for some time, it certainly never feels quite real.  I think it may be a tendency to be a coping mechanism that many of us do - that it just can't be that bad, that things will turn around and get better.  But it didn't get better, and in the end without a question of a doubt there was a sad suffering that can only be released with being called home to Heaven.   Our Auntie Rhonda was quite special. I don't think she had a wicked bone in her body.  In fact I often questioned and admired how she found ways to offer instant forgiveness for those who would trespass against her, and had one of the biggest hearts I know. 

More than anything I adored how she related to my sweet Noah.  Never once did she ever look at him as if he were less, or a child with a disability. Her eyes only  seen a child that needed just a little bit of extra love and care.  She never was shy about holding him, as awkward as his movements were, and how flopping and rigid he could make his body at any given moment, or his tendency to change his attitude from minute to minute early on in his babyhood, never once did she have an unfavorable thought or feeling in her heart when it came to Noah.  A true testament to her incredible character. 

She also was an incredible shopper with great taste.  Next to my Nana she could find some of the cutest cocktail dresses with no place to go.  She'd scoop them up on clearance and invent a place to wear them to.  The life of the party, with a touch of sparkle and glitter. 

Today her funeral services are being held. It was it was a bit hard to realize that being in attendance for her visitation and services would be an impossibility.   Planning a trip out of state takes weeks sometimes months with Noah, and we come with lots of travel complications; a handicapped accessible van which can be upwards of $200 daily to rent, airfare for four, a place to stay that has adequate sleeping accommodations and safety features that mimic his hospital bed that he has at home, food - and a way to blend Noah's meals.  Not an easy feat at all in three days.  I know that she'd understand, she always did.  But, in the end you always wish and hope that you're able to be there for those who loved you in life to honor their memory. 

I am comforted that her funeral arrangements are everything she would have hoped and dreamed them to be.  Pictures of her casket are exactly what she would have wanted and I'm thankful that her life insurance policy can assist her with such a proper service.  She talked about this day often in recent times, knowing that eventually this time would come.  Although sometimes uncomfortable for those around her and speaking to her, she was quite comfortable with making it known what her wishes were.

However, it did feel inadequate that all I could do is provide a simple blue flower arrangement.  There are so many parts to special needs parenting that are really difficult, one of which is your ability to fulfill what is in your heart, because financially it's all you can do just to try to keep up with out of pocket medical, therapy and equipment costs which can sink the strongest of ships.  Special needs life tends to just complicate a lot of things. Yet, I find solace in that there isn't a more loving person to help watch over Noah from up above.

When my cousin passed away in a tragic car accident years ago and she called and left me with a message with that crying scream of pain I knew her heart would always have a wound that wouldn't heal.  I sent her this plaque of a poem called the Broken Chain to comfort her during that time.  It read:

"We little knew that morning that God was going to call your name. In life we loved you dearly. In death we do the same. It broke our hearts to lose you, you did not go alone; for part of us went with you, the day God called you home. You left us peaceful memories, your love is still our guide; and though we cannot see you, you are always at our side. Our family chain is broken and nothing seems the same, but as God calls us one by one, the chain will link again."
The chain will link again.  My soul feels certain of it. 
In loving memory of Rhonda Koster


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

Wednesday, September 16, 2015

Birdies & Butterflies 2015

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I always feel so honored when people that have become a big part of Noah's life invite us to events.  And I am so grateful for the opportunity to give those who gave so much love to him and our family a hug in real life.  I was especially excited to meet the Sterner family at their sponsored charity event this year called Birdies and Butterflies.  The Butterfly Fund is not only a foundation that has welcomed Noah with loving and open arms, but their mission is one that is close to my heart as they embrace so many children to help in the special needs community .  It takes a very special person to see a child with a really scary diagnosis, with severe disabilities, and many children that are critically ill and fighting the biggest fight of their lives each day and say I'm going to go the distance for that sweet child and make a big impact in their life.  And that's exactly what The Butterfly Fund does.   But these foundations can't do it alone, it takes a collection of loving hearts and gifts of kindness to financially fuel the lives that The Butterfly Fund can touch and reach. 

Birdies and Butterflies is a yearly golf tournament with a dinner party, awards, silent auction, prizes, putting competition hosted by Madison & Company Properties at the Blackstone Country Club.  Although a tad bit of a drive from home, it was worth every single mile to get there.  You come to the Country Club really at the end of E-470, it sits on a hill overlooking waves of land and newly built homes in the distance.  It's certainly a majestic Club House with lots of fine touches and features.   Noah found a sense of calm as we all sat together enjoying each other's company out on the massive patio deck.  The weather was perfect, a light breeze with a comfortable warmth.  It was the perfect weather for soothing one's soul.  Peaceful and to be in the presence of others - parents and children on the special needs journey and the special family who brought all of us together.  

You always feel this instant amazing connection with other families who know what this feels like to worry about a child that is as medically fragile as a Butterfly.  You can see it in their eyes, you feel it in their smile, and the way they hug to embrace you in an unspoken blanket of comfort and understanding.  It doesn't even matter that our children have a differing diagnosis because we share that universal understanding of just how hard and beautiful this all is. 

The Sterner family - they are remarkable - all of them - right down to little Mia their granddaughter.  She is pure heaven and magic.  A child that is so incredibly tender and loving, I just wanted to bring her home with me.  A family that has devoted so much of their time, talents, love and kindness to move mountains for children and families whom they've never even had a chance to meet.  They are so rare that when you find someone like that on the special needs journey they are like this bright shiny diamond that glitters in all things golden.  Their hearts and intentions are so pure and true.  They are remarkable people.  I could only hope one day to be able to touch lives in the way that they do.  

Noah had the very best time, especially during the auction when he really wanted to participate and raise his hands increasing the bid.  Silly boy - had they honestly counted his waves we would have needed to take out out a second mortgage to bring home all that he was bidding on!  It was truly a funny moment.  Noah clearly has an agenda.  The only thing he declined to bid on was a Manning Bronco's Jersey, which was surprising given he typically loves football.  He must have overheard his dad's big desires at the silent auction items as he drooled past every Avalanche item that was there, as that seemed to be what most interested Noah in the bidding wars. 

A very special surprise and gift however came at the end of the dinner party when Noah's daddy was gifted in the auction with a hockey stick signed by Adam Foote from the Avalanche and a signed hockey puck from
Gabriel Landeskog with opening day tickets.   I haven't seen Noah's daddy be that happy in a very long time.   It was such a beautiful moment, and something so incredibly special and unexpected.  Christmas came early for Noah's daddy.  I don't think he'll ever ask Santa for anything ever again!  

The most rewarding moment of the evening though was spending time with other families and children.  Even though my life is better because Noah is in it, I still feel this huge blessing each time I get to meet another little child with special needs.   The Butterfly Fund does an amazing job of bringing awareness to a disease called Epidermolysis Bullosa - also known
as EB.  I first learned of EB some years ago when my life was touched by the story of a little boy with EB named Tripp.  He was the one who led me to find the work The Butterfly Fund was doing for children with special needs.   Before learning of Tripp's story I had very little knowledge of EB.  It is a lot like Cerebral Palsy in that it comes in different forms and degrees of severity.  However, all of it scary and has the potential to be life-threatening with infections and often secondary conditions that accompany EB's primary diagnosis. 

But it's the spirit in these little bodies.  Have you ever met someone that your soul feels so drawn to?  Someone that you can feel radiates this beautiful energy just by sharing a room with them? I had the pleasure of meeting William who has a very aggressive form of EB.  The event was held in his honor and he is such a precious little boy.  He's very smart and wise beyond his young years.  Having a conversation with him felt like I was opening a gift of wisdom.  He was teaching me, as I'm sure he teaches so many that are blessed enough to have the pleasure to meet him.  A child that has every right to complain about his pain and bodily challenges yet smiles brightly.  And out there on the green you could see him putting and golfing with delight.  He also has the most amazing family.  In fact I adored them.  A tight knit family sticking together and there for each other doing all they can for this little boy.  I wish Noah had that kind of extended family support and care.  It's a really necessary thing when you have a child that is so medically fragile to have as many loving hands and hearts on deck at all times.   William lives in San Antonio, so I'm really hoping that someday that if we can make it back there to visit Morgan's Wonderland which is our big goal and dream that I'll be able to see William and his family again.  You can watch a video about William by clicking here

William painted a very special painting of a "Special Needs Elephant" to be auctioned off.  It made it to a $2,000 bid, but in my mind it was really a priceless piece.  I loved William's explanation of what made his Elephant Special.  You see it was a painting of an African Elephant typically known to be very aggressive in nature, but this Elephant had a demeanor much like that of a kind Asian Elephant which was easy going.  So that is what made it special.   

Please if you have a moment to spare, I wish that you'd pray for a cure for EB, and if you have a chance please show The Butterfly Fund your support.  They are working to help from a great place of love and donations assist them in helping so many children.  To learn more about the The Butterfly Fund and to donate click here.


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

Wednesday, September 9, 2015

Failure to Appear

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Last Wednesday was Noah's appeal hearing regarding his anti-suffocation pillowcases for his anti-suffocation pillows (which the State approved).  I called in when scheduled only to be told that the Court was having difficulties trying to reach someone at the State to participate in the hearing.  They certainly were aware of it, as they received written notification by mail, a notice from the Court and we had a verbal discussion about it in August during a meeting with the State on various issues and concerns.  So, I was rather surprised that they didn't make an effort to participate in the hearing.  I was worried the Judge would postpone since they could not be reached and failed to appear for the hearing.  But he took my testimony and asked me a handful of questions for clarification on the issue. 

One might think maybe that will be in my favor since the State decided not to even appear, much less file anything to explain their denial, but the Judge was still very clear that if the State provided a reasonable explanation for their failure to appear he could potentially entertain hearing their side.  Part of me wonders if the State didn't even bother because they figure they'll just file an Exception to Initial Decision - just like they did with Noah's Krabat Pilot win last year and overturn anything a Judge does anyway.  Maybe this is their way of snubbing their nose at the system because they know they have the final say regardless of what a Judge thinks.  It's really hard to second guess their intentions. 

It's an exhausting dance that I do with them.  And just when you think you've seen it all they do something else that blows my mind - like not even bothering to show up for a Court issued hearing.  Yet, there I was on time and ready to do battle, even with a very sick Noah that I was trying to care for at the same time, while attending a Court hearing by phone on his behalf.  Without complaint I managed to juggle all things at the same time - behind the scenes without anyone even knowing the heavy load of my day. 

And I've been really worried about Noah's health.  He's been sick frequently since May, with this last time being the worst.  And it doesn't take him long to get to a bad place - it's totally different than when his little brother gets sick.  So I'm sure I wasn't as sharp I as I could have been for the Judge had my mind not been racing about Noah and his dangerous sounding cough.  Still I think, I offered the clearest picture I could, and had a decent detailed strong Motion behind me, with exhibits that I think painted a good picture of the issue, something the Judge admitted he wasn't used to seeing.  But, with my legal background it's the only way I know to present an issue to a Court of Law.   I'm sure most parents just write letters - which works too.  Do whatever it takes just don't let the State steamroll over your child's rights.

The State is forcing my hand to continually appeal just about everything these days.  Yet they aren't penalized not one bit for brushing these things off like it's nothing.  I received Noah's formal denial for sensory clothing - or at least that's what we'll call it.  I suppose categorically it could be labeled adaptive clothing - in my mind it's the same thing.  Although it would have sensory benefit, it also would help with Noah's skin condition, which is easy to document in pictures and in his letter of medically necessity (which the State reminded me means nothing.)  I think still what unnerves me the most is that I had approval for many months with simply with unreasonable discussions on how the State wanted to go about that approval (i.e. me send them a check for my unspecified portion and a 50/50 proposal) when I knew for a fact that wasn't in the guidelines, and then when I spoke up and challenged them on that issue, the TRUTH struck a nerve with them and they decided to deny it as a penalty to me. 

And you just can't do that.  You can't approve something for months and then turn around and deny it.  That is a tremendous abuse of power.  Yet, I still need to work on filing an appeal for that too - something I'm dreading knowing the time it takes me to accomplish.

Today I learned that families that were being able to utilize benefits that Noah was denied, were terminated from those services.  Likely because I brought it to the State's attention that what they were doing was unfair if they weren't equally offering benefits to all like Noah across the board.  I still take issue with it, as they are still allowing some parents to utilize certain benefits but only if they are LESS physically disabled than Noah is.  Children with Autism and Aspergers for instance have often greater access to other benefits where children like Noah who are severely handicapped are denied under the exact same waiver.  A waiver that is currently designed to be universal across the board regardless of diagnosis. 

It feels very much like your hands are tied behind your back though - I see the problems - I can tell everyone about them, shout it from the rooftops in fact yet I lack any ability to change it, fix it or make it fair for all children on the CES waiver.  Some parents are blind to them - some don't care, and some much like me don't know what to do.   I can't even do a good job for Noah anymore since I've become so outspoken Noah is now suffering the consequences of me being a strong advocate.  A fear that many parents have so they hesitate to ever participate in questionnaires that could lead to their identity, or speak up publicly about problems, or even write about issues or orally discuss problems.  Because they know if they do their child could easily be targeted for even more denials than they already are.   I'm proof of that. 

Someone asked me if I wished that I had just stayed quietly on the sidelines and sucked it up, and not made waves with the State.  But I think if you don't stand for what is right then what is the purpose of all the
"Be sure you put your feet in the right place, then stand firm."


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