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.