Tuesday, July 19, 2016

Telling My Heart To Keep Beating

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It's a strange thing how life can leave you feeling like you're been shattered in a million different pieces. And just when I glue myself back together, put imaginary band-aids on all the open wounds, something comes along again and just leaves me broken all over again.  Part of me so incredibly frustrated that I even allow others to impact and influence the direction of my days in such a powerful way.  I crave days without problems when nothing goes wrong, nothing for me to fix, nothing for me to fight for, a simpler existence. 

I have found myself in a purge mode, where I'm trying to cleanse my life from things I don't need, possessions that aren't essential that I can part with to create more room for Noah's needs.  In some ways it's a feeling of relief - like this giant epiphany that I've been searching for.  Perhaps it gives me a sense of influence over things that are often beyond my control. I sat down one afternoon and evaluated the roots of my frustration.  Certainly a large part lies in the daily fights for finding help for Noah and failing.  Empty promises a strong column on the chart - people reassuring me they'd help fundraise, or fund an item for Noah, but none ever had true intentions of following through.  Those who sent me words that they'd "pray" for us, when in reality that simply is a phrase people casually use to absolve themselves from any real involvement in your life.  If they pray then they don't need to physically be present, or send you a card, or call you, or bring you a gift certificate to the grocery store, to ask you to lunch, or to event think about you beyond the mere two minutes it takes them to type out an email message or social media comment that says "I'll pray for you."  And while I believe in the power of prayer people toss it around so casually now that it's become just words and not a real action.  I crave honesty; those who deliver in promises and are true to their word, those who don't leave me feeling stranded all the time.  And I've come to accept the only real person I can ever count on is myself.   Which means if Noah needs something, I'm going to have to find a way all on my own. 

Fighting and advocating can bring you to your knees if you aren't careful.  You can suffer significant burn-out from trying to be the world's hero.  You realize everyone has put you on the front lines, but they expect you to fight the battle all alone.  It's all I can do to fight just for Noah and even then I often lose more than I win.  I hate this perpetual feeling of a me versus you theme to my day.  I wake up prepared to fight with SSI, Medicaid, Medicaid Waivers, caseworkers, supervisors, managers, attend court appeals hearings in an attempt to reverse denial benefits for Noah. And outside problems are intensified when you are a parent with special needs - trying to find creative ways of apologizing to my neighbors who's yard was inadvertently sprayed with an organic weed killer from our yard service company that totaled their decorative plants growing in between their flag stone pathway that separates our property, dealing with contractors that lie to get a sale simply because they see you as an easy mark and they know you're desperate to replace a molded pained window that exists in your medically fragile child's bedroom, a security company who then wants to further take advantage of the situation and tells your contractor to permanently disable the window security so they can sell you on a digital more expensive system that is triple the cost, having a mortgage company conveniently losing your check in the mail and to avoid a late fee you hand out the details of your bank account over the phone and are forced to place a stop payment on a check that costs $45, only to have that company attempt to cash that cancelled check two days later. It's like a cluster of daily complicated problems I'll never escape from.   I have to keep telling my heart to keep beating - to keep going, to breathe.  Just breathe.  Just try to breathe.   It's easy for life to feel like it's suffocating you when you're dedicating all your positive energy and every ounce of yourself you pour into your child with special needs and everything that accompanies that.

Although I've really lost count I think it was Noah's fifth or sixth appeal hearing on May 20th of this year.  I was battling the denial of PPod Accessories for Noah's existing PPod that we paid out of pocket for, and an in-home personal chef to assist with the preparation and dietary needs of Noah's pureed foods.  Of course these denials I believe were very much retribution and retaliation for speaking to the news media and press about the financial circumstances surrounding Noah's denials and supporting transparency among all of Colorado's Community Centered Boards or also commonly referred to as CCB's.  I never even had the chance to formally request these benefits - the State simply anticipated I "might" ask for them based on some very lose conversations prompted by Noah's caseworker at the time.  The State certainly didn't deny that retaliation was the reason why Noah received these denials via a telephone message within a half an hour of being called for a public comment to accompany a broadcasted media story of CCB's getting their hands caught in the cookie jar stealing funds designated to go to children like Noah and being used for things like Costco memberships and private telephone bills.  CCB's fighting hard against transparency hiring lobbyists and spending hundreds of thousands of dollars to avoid having to be transparent.  But those who have nothing to hide - hide nothing at all.  While SB-38 passed, it didn't encompass everything that I wish it had - in a way it was a stripped down version.  And while it's a good start perhaps, we still need and deserve so much more.

The State was citing Social Security Act Section 6505 for the reason why they decided to suddenly deny Noah PPod accessories.  SSA Section 6505 was signed as Federal Law in 2011.  Five years later, they decide to use it against Noah.  Section 6505 prohibits the exchange of money to any out of country vendor for any Medicaid Waiver benefit.  This means that equipment that exists in places like Canada, the UK, and Northern Ireland can't be paid for with Medicaid or Waiver funding.  Leaving everything once again a completely out of pocket unassisted cost for already financially struggling families.  I think the original intent and my interpretation of SSA 6505 was to prevent Medicaid fraud; for instance someone on Medicaid traveling to Mexico for pharmaceuticals or treatment, and not necessarily to block a small child from life changing adaptive equipment that they need for their daily living needs and quality of life.  An Administrative Law Judge however found that his hands were tied as it is Federal Law, and all States are bound by it.  The Executive Team for Colorado Medicaid assures me in telephone conference calls that they will continue to explore the application of SSA 6505 but I suspect if they do it will be years from now and that there is no real hurry as SSA 6505 is beneficial for them - it allows them an outlet to prevent even more children from accessing paid category benefits, and in turn they will pocket even more.   The Administrative Law Judge felt that an in-home chef or person to assist with the preparation of Noah's meals was a covered benefit under EPSDT which isn't the case.  I likely didn't fully explain my intent of that request, because in all honesty I didn't even know the State was going to issue me a denial for a service that I was just tossing around in my mind.  EPSDT Medicaid only covers certain supplements and calorie drinks, it does not provide for a personal cook/chef, in-home dietician of sorts.  I might explore that at another time, I'm not really all that sure - it never was a front runner of things I was considering pursuing for Noah.  The State's only intent with that denial was just to provoke an angered response.

A few weeks later the State decided to decrease Noah's respite and sent me an 803 notice.  Because I am Noah's legal CNA, there is a provision that says because I am Noah's CNA that I need less respite hours than a mom that has paid private duty nursing and goes off to work each day or can come and go as she pleases because she has hired care for her child.  Backwards I know but I don't make this stuff up.  If anything the parent who dedicates their entire day to their child's 24/7 care needs more relief than the parent who has help.  In any case this means that Noah cannot exceed his category funding.  Other families can, but I'm penalized because I'm Noah's CNA. There isn't anything I can do about that regulation either.  I'd lose if I tried to appeal it - as a Judge would be bound to follow that rule. The only thing that I could dispute would be that his county takes a 3.5 percent fee out of Noah's yearly funding and pockets it on any category or benefit they approve which leaves Noah with even less than he would be afforded otherwise because these agencies are just making money off of an already bad situation. Here's all the help we'll dangle it like a carrot you'll never reach, and if you do reach it, they're going to snap 1/4 of that carrot and eat it themselves.

After a long battle that reached more than eighteen months from start to finish came to a final conclusion.  The fight for adaptive sensory clothing for Noah was finally fully won even after the State filing an Exception to Initial Decision and then taking nearly another five months for a determination.  No parental portion of responsibility which I knew was the case all along.  The State did require I obtain another PAR, which had already been done having Noah's treating physician sign off on how many articles of clothing he'd need seasonally.  While it felt redundant I jumped through the required hoops and I coordinated and picked out some clothing to get Noah into the upcoming fall season.  I wish the victory had been easier, I wish that no parent had to fight as hard as I have fought.  It feels so cruel and unnecessary in all that we experience in a day that someone would intentionally add to our stress and heavy heart.  It feels so bittersweet - a strong fight won, but I know so much more still lays ahead of me.  But as a portion of Noah's allotted clothing lays before me ready for me to hang up a feel a huge sense of relief and as a look at this small pile of clothing as if its a symbol of my unwavering efforts and promise to Noah that I will never ever give up.

Even without a heavy dose of evening caffeine to keep me alert for Noah's needs in the night, my thoughts keep me up at night trying to out-think the situation.  Where the money will come from? How to fund a wheelchair, an activity sitter, a floor sitter, a Mygo Leckey Tour Base, a seating system for Noah's Zippie chair, what to do with Noah's Convaid models that I love but that are giving him pressure sores.  Medicaid of course "kicked back" three of Noah's requests.  A "kick-back" is one step away from a denial.  They do a "kick back" to gain additional information to determine if they should approve it or deny it - you have to answer additional questions and justify the need.  Sometimes they'll approve it, sometimes after the "kick-back" they'll deny it.  I'm always so prepared for a denial that since the "kick-back," my mind has been racing to how fast could I fundraise for these things, what could I sell in my house to make sure Noah gets them, appealing feels endless and drags out things Noah needs sometimes longer than a year when he needs something now, not a year from now, knowing that some things his waiver might fund, knowing that since that too is a Medicaid program I'd likely face a denial there too.   Noah has outgrown all equipment he currently has from his toddler years.  He is seven years old - quickly headed for eight and I worked so hard to acquire him all that he needed, and I can't just start over.  I can't just find another foundation to buy him a bigger floor sitter, or a new wheelchair seat, or a mobile base for an already existing device - I can't just find these avenues of support anymore.  The resources have dwindled.   Many of the pieces of equipment Noah currently has didn't even have a Medicaid code for funding when he was little and I was forced to put so much of it on credit cards to obtain it.  Years later there is no safety net, and nothing to fall back on.

The really tragic aspect about being so dependent on a broken government system for children with disabilities is that I'm doing my job.  I'm being this incredible parent to Noah.  I search the ends of the earth to make his quality of life and happiness the best that if can be, I am devoted and offer him every part of my being and spiritual self, I love him beyond all measure and have had to even alter my personality over the years to do combat and battle on his behalf when that's not at all who I was before he was born.  And I can't just absolve those standing in the way of the benefits that Noah is entitled to.  And when I say entitled I mean benefits that are regulated under rules, regulations and laws that are being withheld from him.  And it's not just Noah - it's all children like him, it's happening to so many of them - especially if their parents step outside of the compliant box to appeal a denial or challenge an injustice or promote change through legislative efforts.  Doing the right thing by your child and the special needs community doesn't at all make you very popular with certain agencies. 

- Investing in a child with special needs in no way a luxury, but should be considered a national necessity. - A variation of thoughts by Marian Wright Edelman


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

Wednesday, July 6, 2016

4th of July: Smile Gratefully

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Blazing summer heat intensified the smell looming from neighborhood bar-b-ques and July wild raspberries ready for picking.  Classic signs of impending Independence Day celebrations to come.  I never fully know how far to plan our Fourth of July activities since Noah's sensory challenges vary and can be unpredictable.  Yet, with summer in full swing, I can't help but want to absorb that feeling of bar-b-ques, picnics and evening fireworks.  I decorated the kitchen table with a disposable stars and stripes tablecloth and adorned with a handful of red, white and blue napkins and paper plates.  Luke and Noah in matching flag shirts, ready to celebrate the day.
Ironically Noah lost his fourth tooth the evening of July 2nd, just in time for the 4th of July.  He went to reach for a toy and his strong athetoid movements caused his arm to jerk back and he hit himself in the face knocking it out.  It had been very lose but not lose enough for us to pull.  We both were relieved that Noah didn't swallow this tooth.  The search for his 3rd and swallowed tooth was called off after seven whole days of searching.  I never imagined that I'd be mashing feces in an attempt to locate it, yet the mother in me really wanted a full collection of my child's baby teeth.  I suppose I would have made a terrible gold miner as I failed to locate that teeny speck of white.
Given the track record of special need children who frequently swallow their teeth, I have to accept that three out of four isn't bad considering the challenge of a child who cannot put their hands in their mouth to wiggle out their own teeth.  Noah left a tooth fairy note to explain the loss of his third tooth and the tooth fairy still left him money.  She must have been feeling particularly bad for him as she increased the amount for his 4th tooth to two dollars.  Noah beamed with delight over the financial increase.  Let's hope this is motivation to prevent him from swallowing any more.

It certainly is different looking at Noah with a new smile.  His smile always particularly precious, now has a new character about it.  And it feels like a piece of his childhood is fleeing and I miss the days of yesterday.  Common feelings of motherhood for all mothers.   Yet, we can't remain frozen in time and while Noah doesn't blossom in milestones, he certainly grows and thrives in a variety of other ways that tells my heart he's growing up.

Noah's grandparents smoked brisket and ribs, and I attempted my own smoking of salmon for the first time.  I'm trying to branch out and try new things.  I often get so comfortable in this comfort zone I create for myself that I never leave the boundaries of what I've familiarized myself with.  The salmon was a good first effort, but perhaps I added too much salt for the brine and I certainly will consider that more brown sugar the next go round is essential.  Noah found his blend of smoked bar-b-que and potato salad delicious and was only moderately found of his pureed fruit salad.  Of course he loved his cheesecake finale.  The child with a perpetual sweet tooth. 

Noah doesn't do well in regulating body temperature.  Extreme heat and cold is problematic and always has been.  Upon the recommendation of other special needs parents we purchased Noah a Water Mat from Walmart for $19.  Was probably the best $19 I've spent all summer.  It's like having an 8x5 play waterbed type area for Noah to roll around in and offers the a cool soothing comfort from the cold hose water.  And the really great part is both children like being together which gives them an opportunity and way to play together.  It's really a super cool product that I wish I would have found years ago for Noah.  Now I have to hope it doesn't spring a leak as he's grown quite attached to it.
Noah also geared up in the Upsee to help his daddy water the flowers that were destined to suffer a demise due to heat stroke without a much needed drink.  I had hoped to walk Noah in the Upsee, however once we were suited up together it was apparent that Noah has simply grown too tall in comparison to my short height.  I think we will have to pass the Upsee activity on to him and his daddy.  I wish there was another product similar to the Upsee for older, growing children.  The entire family will be sad when we have to retire the Upsee due to growth.
We walked to the city's Fourth of July celebration which they hold in front of our house at the park each year.  We always walk down and then walk back.  They have small activities like inflatable bounce houses, live music, and free cupcakes.  We never really participate in anything, our family dynamic is so different that even in a crowd we still stand out.  It's really a quick walk there and a quick walk back - really simply to say we checked it out.  We didn't realize when we moved into this house that the city's fireworks were nearly overhead our house.   Not the best for a child with a severe sensory processing disorder.  Noah is always a gamble on how he'll react.

Surprisingly, there was no big meltdown or hysterical crying this year.  He was very jumpy with each pounding loud boom, and I am not sure he loved that feeling.  He did however tolerate the situation to get through it, and seemed to use his grandmother and her assistance with an umbrella to prevent any rain sprinkles from touching his legs a security blanket, but I assume he was likely very relieved when the firework show had concluded.  Despite neighborhood lingering fireworks he fell asleep relatively quickly. 

"When all your attention is focused on fireworks you forget there is an empty sky in which the fireworks appear." Michael Jeffreys


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

Tuesday, June 21, 2016

Say a Prayer, Send a Smile, Make a Difference

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The C.O.L.E.'S Foundation has been an important part of our journey with Noah for many years.  I'd tell you that finding C.O.L.E.'s all those years ago was just chance, but nothing is just chance.  It was as if something much bigger led me to find them.  Through the years, C.O.L.E's Foundation has been faithful in posting encouraging and loving words on Caringbridge blog posts (Noah's companion blog that I maintain for his original followers), and has never ever abandoned us when we needed prayers or a virtual hug.  Many foundations have come and gone in Noah's life, very few wanting to be involved continuously.
There have been days when I've felt so down and out, flat on my back with the weight of the world on my shoulders and I sure enough someone from C.O.L.E.'s faithfully leaving me a loving message of hope, faith and courage to lift me up in some of my saddest hours.  It's rare when people don't move on and onto other things in their lives, leaving you behind when you have a child with special needs.  My trust in strangers and people who care have diminished to almost nothing now, I question everyone's intentions who walk into my life knowing it won't be long until I never hear from them again.   I've grown into a pattern of someone introducing themselves by name, and me not making an effort to even retain the name in my memory because I know that the likelihood of me seeing them again is slim to none. 

C.O.L.E's has been the exception to this and for countless years they've never gone away, they have always been there, waiting for me to speak up about a hard day, quick to catch me with kind and loving words to support me in my time of need.  Very few people in this world will do that.  I have very little supports in my life that care enough to even give consideration to how I'm doing or how we're all doing as a family or more importantly how Noah is doing. People check in time from time almost as if they are outsiders casually taking a certain pleasure in the the train wreck called your life, few genuinely have an interest in helping you put the pieces of the wreckage into perspective and reminding you that although you are bruised and hurt and mangled often beyond recognition that you're still living, and how important that fact is.  Because tomorrow holds the hope of a new and better day.

If Noah isn't doing well, C.O.L.E.'s is one of the first places I go to ask for prayers.  They are so responsive when I just need someone to hear me, pray for Noah and send him well wishes.

This month C.O.L.E.'s Foundation featured Noah and our family as their family for the month.  For the entire month C.O.L.E's supporters from around the world send Noah cards with notes about themselves, prayers, wishes, love and tenderness.  These cards have been particularly special to me this month, as I've had weeks recently where I just feel like the world has turned its back on us.  I've been hurt by treating providers that haven't been truthful with me, repair contractors that disappear and never show up again once they lay eyes on the little boy on the floor, emails that are curt and less than caring when it comes to services your child needs, inquiries about even taking Noah to Bandimere to be in the tower so he could watch races with his dad and being told unless an organization requests it on his behalf it's a no..., I have been distressed to say the least about so many things that I have no control over.  That's the hardest thing - to feel helpless over situations that I wish I could change and I can't.  And those helpless feelings of feeling like I'm falling short for Noah sting like the longest sword is being driven through my heart.  And in my spare time I convince myself that I don't want anyone else's heart to bleed like mine does so I attempt heroic efforts to help other special needs families navigate various problems in their own lives.
Inevitably this all takes it toll on my energy, my hope, my faith, and trust in my fellow man.  Each letter, which have come daily from the C.O.L.E's foundation has felt like a reminder at the end of the day that while things seem hard (and they are), that at the end of the day - somewhere out there - (just like the theme song from the movie An American Tale with little Fievel the Mouse....https://www.youtube.com/watch?v=dan6g5a3Dgg) someone is thinking of you.  And some days before you go to bed you really just need to know that. 

Thank you C.O.L.E's foundation for sending us a team of prayer warriors, people dedicating precious time from their busy day to stop and hand write a note, put it an envelope and mail it to us with such love and kindness.  Faith and prayers unwavering.  Hope being sent like beams of sunshine.  I have felt every powerful written word this month, and I hope to bottle up this feeling of being loved so that it carries me through all the days ahead.
For those of you wishing to make a meaningful difference in the life of a special needs family like ours, you can always sign up to support their Say a Prayer, Send a Smile, Make a Difference Program.  I can tell you from personal experience that it's such an important program to remind a family that they aren't in this alone and that they are cared about. http://www.colesfoundation.org/


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

Monday, June 20, 2016

Feel the Burn: The Cheyenne Zoo

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We woke up geared for our last moments at our Broadmoor Cottage, we ordered conservatively - a tiny room service breakfast to save on our funds... although I wanted that fancy french toast, I used my will power to order a small peach yogurt his grandmother a strawberry, I splurged for Luke who insisted on an omelette and his daddy had cereal.  A small but still lovely breakfast before we headed out to the Cheyenne Zoo and then making the drive home.

Luke I think detected that we were leaving.   Not tickled he was a bit of a handful to convince putting his luggage into the car.  I can't blame him, I'm fully grown and I wasn't really loving the idea of packing up and leaving this wonderful weekend behind either.  But as they say, all good things must come to an end.  Lots of guests were checking out the same time we were, many having personal driver's and their names labeled on vehicles who were patiently waiting on them curbside.  The hotel allowed us to keep our vehicle with us on property with remote entry, which was so nice especially given never knowing when we would need to come and go quickly with Noah.  I was so appreciative of their thoughtfulness to what would make us comfortable.

Once we had packed up and loaded the vehicle we sad our goodbyes to the staff who had coordinated such a peaceful and lovely time for us.   Feeling as if I've known them years and not just a few days.  People that I hope that I'll be able to remain in touch with throughout our journey as a special needs family.  Their care and tenderness certainly extended beyond just doing their jobs.  And I appreciated their genuine love and sincerity.
The drive to Cheyenne Mountain Zoo was short.  It's very close to the Broadmoor.  I had been once before in my life as a child, but it either wasn't that impressive to me at the time, or I was too young to remember it.  Perhaps a combination of the two.  Noah adores the zoo, so I fully expected him to love the Cheyenne Zoo, but upon arrival he started to pout and cry growing more agitated with a zoo gift shop worker who wouldn't stop talking to him and delaying him from seeing animals.  His crying grew louder until his daddy had to carry him around the zoo for a while, hard to do in hot temperatures with such high elevations on the mountainside.  Noah finally calmed down enough for us to put him back in his wheelchair but not before realizing he needed to be changed.  Personal details I know, but it continues to frustrate me that there are no good spaces to change children like Noah in any bathrooms.  We have to either lay him on the floor, try to hold him while one person changes him upright or slouch him down in his wheelchair and pray he doesn't fall out of it while we try to maneuver changing him.  I'd like to believe that someday the law will require changing tables big enough for all disabled adults that must rely on caregiver assistance for incontinence care.
Noah never really fully regained his happiness.  He tolerated the giraffes who were overly curious about him.  He seemed to find their tongue exploration obnoxious.  The smells from the zoo were overwhelming, which was hard on Noah's sensory gag reflex.  And everything is uphill, and uphill and uphill.  In fact just when you think you're done... yep you guessed it, another hill.  When pushing a wheelchair you can certainly feel the burn in your legs.  Who needs to go the gym when you can find a really elevated zoo and push a wheelchair?  Nope not us.
Luke was rather board, it's hard to see many of the animals without stairs or an elevator.  It wasn't the most accessible friendly zoo, certainly it felt more crowded than our local zoo, it was smaller.  It does have incredible views on a walkway that makes it feel like you are floating on top of the entire city below you.  People whipping out those selfie-sticks to make it look like they are sitting on a cliff with the foothills and houses in the distance.
We decided there wasn't a real good option to eat at the zoo and made the decision to stop off and eat somewhere on the way home instead.  I don't think Noah was overly impressed with the Cheyenne Zoo.  Perhaps he was sad we left the Broadmoor (and let's be honest who wouldn't be?) and I know he probably was let down that it wasn't Santa's Workshop again... because well, Christmas rules.
We had a quick bite to eat, where Noah also had a meltdown because I couldn't order him a Frosty fast enough from Wendy's... and we headed home carrying with us sweet memories of our time together.


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

Sunday, June 12, 2016

Ristorante Del Lago at the Broadmoor: First S'mores

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After we toured the Penrose Museum we headed to the West side of the hotel for dinner at Ristorante Del Lago.  The view was so beautiful.  We had a table with the view of the lake.  It was peaceful and as lovely as a painted picture.  The ambiance drawing you into the feeling of a wonderful dinning experience.  The chef of the restaurant came to greet and meet Noah and to make sure he pureed a meal for Noah and a special desert.  I can't even begin to describe how incredible that is for a chef or a restaurant take interest in making Noah a meal.  I was intrigued by everything on the menu and wanted to sample everything.

We ordered the Antipasti Misti as an appetizer.  I loved how it was a little bit of everything.  Some that I was familiar with and some that I was new to me.  The Salame Rosa was incredible and one of my favorite meats but so hard to find in grocery stores, buffalo cheeses, croutons, olives, a couscous with shrimp, and pickled vegetables.  Luke had his own little appetizer of house mozzarella and heirloom tomatoes.  It was a really hard decision for me but I finally wound up deciding on Pappardelle Bolognese which was Pimontese Pasta, Braised Eagles Nest with Ranch Wagyu Beef.  Chris ordered Bucatini Cacio E Pepe, which was is a roman style cheese sauce with pepper and he added a house sausage to the dish.  He has not stopped talking about that meal.  He says it was the very best dinner he's ever had any any restaurant in his life.  Noah's grandmother ordered Colorado Striped Bass which sat beside a bed of sugar peas paired with ricotta and lemon basil pesto.  Luke had buttered noodles, and Noah had creamed noodles and cheese with pureed blueberry cheesecake for desert.    

I however was in awe of the cappuccino.  Served with a biscuit and a rock candy stir stick, it was beautiful.  A coffee work of art.  Between us we ordered five... I know who orders five cappuccinos... but I was soaking up every heavenly minute.  We don't ever get out much less have the opportunity to splurge on anything that makes us feel human, alive and happy.  I wanted just to be happy.  So we ordered five cappuccinos because it made us happy.     

The restaurant staff was incredibly sweet.  They even made Noah and Luke a s'mores kit so that they could make smores by the fire at the lake.  They even pureed chocolate and gram crackers for Noah to dip his marshmallow in.  We were given a handful of bamboo skewers and a s'mores kit in a bag.  We had never made s'mores with the boys. 

We did have a fire pit years ago before Noah was born.  Two of them actually.  And then Noah was born and with the crushing weight of feeling like all dreams and life as we knew it died, I sold them.  I figured that ship had sailed and we'd never have the need for a fire pit any longer, Noah could never do those things so I purged my life of things like that.  I took a big shovel and buried those dreams deep in the ground.   So, I suppose I was rather excited at the idea that we were going to make s'mores by the fire.  I wasn't sure how Noah would really do with a marshmallow.  But I knew he'd at least enjoy the fire and the activity itself. 
Luke was really excited.  I showed him how to cook a marshmallow to just the perfect point, add a piece of chocolate and squish it between two pieces of graham cracker.  He was in awe that he cooked and made himself a desert.  Noah eagerly awaited his marshmallow and sucked it down like he was craving that melted soft sweet goodness and chattered for more.  There was a family sitting around the fire pit who looked like they wished to be making s'mores, I didn't detect they were guests at the hotel - but a lot like us - wishing to be a part of a world that that feels a lot like you are an outsider looking in.  I offered them some bamboo sticks, a handful of marshmallows, a whole candy bar and some graham crackers.  Excitement lit up in their faces, they were so grateful.  And it felt so good to share our special moment with someone else.  And it's a good lesson to Luke and to Noah that you must always share and make an effort to include others.    
Our last cappuccinos we ordered to go, so we'd have a nice warm drink to have while we sat out on the verandas at our Cottage before going to bed.  We don't have a lot of easy moments anymore or stress-free days or days that aren't filled with worry.  And I allowed myself to just breathe - for the first time in maybe a year or more where I felt like life wasn't suffocating me.  Although I wanted to cling to that and not leave - as I was checking in to see how many emails were waiting on me... 84 and all about Noah's affairs.  I dreaded going home, it was like I got to pretend that our lives were uncomplicated.   The Broadmoor made us feel so welcomed and cared for.   Even the president of the Broadmoor, Jack Damioli, making it a special point to phone us at our Cottage to make sure that were having an enjoyable stay.   
The following morning we packed our bags and said our goodbyes to the Cottage where we made so many sweet memories as a family and headed out to the Cheyenne Zoo before we got ready to drive back home. 

Upon our return home I had casually mentioned our first s'mores experience with a friend after she showed me a picture of a homemade graham cracker she made and I explained how I had sold our fire pits years ago when Noah was baby after his diagnosis because I felt like there was no point to so many parts to our lives anymore.  Today, a fire pit with moon and stars carved out of the metal sides arrived on our doorstep.  A beautiful and heartwarming gesture.  She silently listened to me sharing a piece of my heart and sent such a thoughtful gift.  I know she wanted me to know there is always the rebirth of dreams no matter how much you think you have to give up on them.


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

Thursday, June 9, 2016

The Penrose Heritage Museum : The Invalid Chair

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We had a few hours before dinner after visiting the North Pole.  We decided we'd take a tour of the Penrose Heritage Museum which is on the Broadmoor property.  Noah's daddy has always loved cars and history so he was naturally drawn to the museum.  It was in walking distance from The Cottages at the Broadmoor and the weather was comfortable.  Admission to the public is free and the museum's attendants were welcoming upon visitor entry and happy to answer questions about the museum's historical contents.

Spencer Penrose built The Broadmoor in 1918, and his widowed wife, Julie Penrose, built the original Carriage Museum which they now call The Penrose Heritage Museum in 1941.  The museum has 31 horse-drawn carriages and 13 motorized vehicles on display.  The museum is home to two presidential carriages, one belonging to President William Henry and the other belonging to Chester A. Arthur.  The museum also has authentic Native American artifacts, and a giant wall full of riding track saddles, horse harnesses and stirrups and antique firearms.
Chris was particularly interested in the Pike's Peak racing track and map.  And they had the wreckage from Jeremy Foley's 2012 mountainside crash which was caught on video tape as it plummeted over the side of Pike's Peak.  The crushed and mangled Mitsubishi Evo sits cradled in an exhibit to reflect the crash with a video and interview from Jeremy about the crash.  Thankfully both driver and co-driver survived and walked away from the crash, but it was one of this videos that watching it leaves you feeling quite paralyzed with fear. 
Chris and I both have a passion for racing.  I think however quarter-mile racing is about as daring as we get.   You'd never get either one of us to race on a mountainside.  Nope, not ever.  They call the race the Pike's Peak International Hill Climb or otherwise referred to as the Race to the Clouds.  The race first started in 1916 and then consisted of both paved and gravel sections.  It is now fully paved, but even still with a 156 turns on the mountainside... it's still a big giant no for something we'd ever consider doing.  Not the a race that is on our bucket lists.  But it remains a very popular race with 130 racers who compete annually.  Hats off to all of them as I watch it comfortably from the safety of my television.

Although I have a tremendous love for racing, I still was incredibly drawn to the numerous carriages that filled the museum.  Rich with history I imagined what our lives might be like without automotive transportation.  Carriages are rather majestic and as they all sat quietly in their display areas it was as if you paid attention long enough each carriage wanted to tell you its own story.  Some with tattered and torn upholstery, distressed woods, and paint. 

We called for a shuttle so we didn't have to walk back in the afternoon sun with Noah, and thought we'd quickly take a tour of the upper level of the museum.  The item that most captured my attention exists on that floor.  It's an invalid chair.  I walked around it multiple times knowing that decades ago had Noah been born in that era that would be what he would have had to use as a wheelchair.  It was large, yet not as archaic as one might imagine it to be.  It could be either pulled from the front or pushed by the back by a servant.  One would lead you to believe that someone with a disability needing use of an invalid chair was rather well cared for.  Yet, I'm sure that life was hard and history tells us those with disabilities were not widely accepted nor favored.  Someday decades from now Noah's wheelchair could also be sitting in a museum...
Noah looked at that chair as if he understood the history of the invalid's chair too.  A child so brilliantly aware and unable to communicate his understanding to others without the assistance of modern technologies.  A child making his own history and leaving his imprint on this world. 


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