Tag Archives: NUBPL

Her Knight Father-Daughter Dance

Lexington has a father-daughter dance organized by the Her Knight organization. I took Katherine Belle to our second such dance this past Saturday.  Here is a little update on our date:

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Katherine’s dress was beautiful. Glenda somehow managed to take pictures of her in it, looking serene and regal.  The truth was much different. She was worked up and maniacal. These pictures were somehow captured mid-action at precisely the right time to make them look posed. In fact, in my favorite photo below, you can see her left hand clutching her dress to pull it up to rub her face.  Yet, somehow, my wife caught her looking calm, mid yank.

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After she was dressed, she looked at herself in the mirror and said “I’m a Princess!”  Yes, you are indeed.

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Katherine is a very shy little girl, much like her parents.  Noise and commotion make her withdraw all the more.  As a result, when people came up to talk to her at the dance, she would not talk back.  At best, she would smile.  Then, when they left, she would talk about them non-stop. This happened several times, as we met several dads and volunteers who knew Katherine from our blog.  I loved seeing them and them introducing their daughters to Katherine.  Katherine enjoyed this as well. For example, after meeting a dad and daughter in line for photographs, Katherine commented “I really am a famous princess!” because they recognized her.  She would not talk much while eating at our table or in line, but several fathers and their daughters made a really positive impression on her.

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Katherine and I spent about an hour of the dance with her dragging me around.  I held her hands from the back, while she “walked.”  She would periodically hop (with me boosting her in the air), which is her version of dancing.  This was really fun for her, as she loved the way her dress puffed up when she jumped. She often squealed when we did this.  She also had a head bobbing, stomping move that would be more at home in a mosh pit than a daddy daughter dance, but, hey, it was fun for her.

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She also loved the Chik-fil-a chicken nuggets and the cookies, but not so much the Chik-fil-a cow mascots. The stuffed ones were okay, but the life-sized moving ones were still scary, despite a recent trip to Disney to see similar characters.  In fact, after an hour of dancing, our evening ended abruptly after one of the cows approached her too closely.  She demanded an immediate exit – well, she delayed long enough to grab a cookie.

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I want to thank Her Knight, and Amanda Bledsoe in particular, for putting on such a great event.  You truly made Katherine’s day.  Mine even more.  Katherine spent all morning Sunday telling her dolls she was “Princess Katherine Belle” and making them “knights.”

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Be Mine

IMG_4835Earlier this week I pulled out a few Valentine’s Day decorations and found Katherine’s mail bag from her daycare days.  I saved the few cards she received (she was only there for two years).  Looking through them made me sad because she isn’t currently in school (we are planning to send her next year) and doesn’t have a peer group.  She makes cards for her therapists and relatives, but she really doesn’t receive any.  IMG_4746IMG_7537Who wouldn’t want this girl to be their Valentine?
IMG_4940Let’s show Katherine Belle how much she’s loved.  She LOVES Valentine’s Day.  Let’s shower her with love.

IMG_4758Xoxo,

Glenda & Dave

#Hope4KB

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I like a challenge, especially when the challenge is for a good cause. What is #Hope4KB?

  1. #Hope4KB is a T-shirt campaign designed to raise awareness for rare diseases around the world through social media (KB is our daughter, Katherine Belle, a three-year-old from Lexington, KY, who is battling an unknown, progressive rare disease);
  2. You purchase your #HopeforKB shirt from Print My Threads here;
  3. Orders will be collected through March 1st. Wear on Rare Disease Day on February 28, 2015 (only orders placed by February 18th will arrive for Rare Disease Day, but we want you to wear this shirt all the time!) ;
  4. Take a picture of yourself and/or family and friends wearing your #Hope4KB shirt and share it on your social media accounts, i.e. Facebook, Instagram, Twitter, etc. with #Hope4KB; and
  5. The goal is to BREAK. THE. INTERNET.

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Ellen did it.  Kim Kardashian did it. It happened with the ALS #IceBucketChallenge – Let’s do it with #Hope4KB! Not to mention these are the softest, most comfortable American Apparel tri-blend short sleeve track shirts.  Trust me, you’ll be wearing this shirt LONG after February 28, 2015. (Psst…you can still help even if you don’t have any social media accounts – this campaign is for everybody!  Simply take a picture and send it to me at gcmccoy1@aol.com and I’ll make sure it’s shared!) *Proceeds will benefit Katherine Belle and Katie Webb Kneisley. (Click here to read her story.)

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A Magical Vacation

Laughter is timeless, imagination has no age, and dreams are forever.  
Walt Disney

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IMG_7348After working hard on a brief from December through early January, the time came for a much-needed break. Fortunately, this aligned with availability at our friends’ condo in Sarasota and while Glenda’s mom was in Wildwood, Florida.

Sandwiched between these two locations is Disney World. We are “wish-eligible” at Make-a-Wish and similar wish-granting organizations and have wondered whether Disney would be a good place to use our one wish for Katherine. With her sensory processing issues, we did not know if she would enjoy the experience. So, we decided to splurge for two park days to see in between Sarasota and Wildwood. I’m glad we did. Katherine really enjoyed the trip.

Glenda and I have decided to give you our top 10 moments on our Sarasota-Disney-Wildwood trip. We are not looking at one another’s list, so these may overlap. They may not. Here are mine, in chronological order:

  1. Walking from Sarasota to St. Armand’s key on our first day, in the beautiful 70-degree weather (leaving behind frost at home), eating lunch and gelato outside, and then walking back;IMG_4654IMG_4134IMG_4138IMG_5331IMG_5342IMG_5279IMG_5270
  2. Building Katherine a “bouncy castle” out of blow-up mattresses at the condo in Sarasota, and her laughter playing inside of it;IMG_5606
  3. Putting on a “puppet show” with Katherine’s stuffed animals from outside the “bouncy castle”;IMG_4246
  4. After learning of Katherine’s diagnosis, the concierge at the Disney resort booking reservation times for us at the rides we wanted to do, and then bringing her a stuffed Minnie Mouse doll. Well-played Disney, well-played;IMG_4403
  5. After running out to get something from the gift shop, returning to the room our first night at Disney to hear Katherine exclaim “Look Daddy, I can walk!” Followed by her letting go of the sides of her pack-and-play and taking a very good step by herself. She then showed mommy another step. While she cannot walk on her own, these steps are the best I’ve ever seen her take and her excitement at “being able to walk” was priceless. Magic Kingdom, indeed;
  6. Taking her on Dumbo as her first ride, then tentatively waiting to hear whether she liked it. Her exclamation, “play another game,” meant “yes”;IMG_6351IMG_6335
  7. Watching her slowly come to love the characters. She met Cinderella, Rapunzel, Belle, Ariel, Donald Duck, Goofy, Mickey, Daisy, Minnie (from a distance), Chip and Dale and some monkey-thing from the Lion King. Goofy and the monkey-thing frightened her – though she has a Goofy obsession. After being tentative, she grew to like them. She still held Glenda’s hand while meeting the animal characters, a separate favorite thing for me;IMG_6569IMG_6524
  8. Dancing with her in her princess dress while waiting for a table at a restaurant, while she made her dress puff out while jumping and twirling (with my assistance) only to realize that the entire restaurant was set up to look out the large windows over the lake behind us. We were the floor show;IMG_7392
  9. Looking at all the sleeping children and zombie-fied adults waiting for the bus back to the hotel after the fireworks, with the only spark of life in the entire line being our little KB, after 12 hours in two parks and no nap, still jumping up and down, screaming “Jump! Jump! Fireworks! Jump!” Boy were my arms tired; IMG_4557
  10. Listening to Katherine sing along with her Mickey’s Clubhouse DVDs on the ride home.
    (Ok, I have to give a couple more, sorry Glenda):
  1. Watching Katherine crawl-chase Glenda’s mom’s dog, Joey, to pet, kiss and play with him. Only last year, she was still physically shaking in fear at the sight of a dog;
  2. During a silly spat with Glenda on our last night in Wildwood, having Katherine say, in her best Glenda voice, “Calm down, Dave. Just calm down” – I honestly wasn’t “not calm” just a little animated – after laughing and sitting down and re-assuring her that I was ok and it was silly, and reminding her to always call me daddy (she only calls me “Dave” when she is imitating mommy), having her hug and kiss me and ask “does that make you not mad, daddy?” After answering “yes,” having her sit thinking for a minute, grin and then ram her toy rabbit, Bibi, in my face, then ask “Does that make you mad again?”;
  3. Watching KB bounce around singing “hot dog, hot dog, hot diggety dog”;
  4. After leaving our meeting with mermaid Ariel, hearing her remark that she was wearing the mermaid’s dress; andIMG_7297
  5. Being covered in glitter from carrying my little princess all over the park. Who knew I look fantastic in green glitter?

    Glenda’s top 10 moments, in no particular order:

  1. Our friends’ condo in Sarasota is a pink Spanish style built in the 1920s.  When we arrived, Katherine excitedly pointed to the condo, exclaiming, “We’re staying in a pink hotel!”  She talked about the ‘pink hotel’ the entire time;IMG_4149IMG_5594IMG_4109
  2. Katherine watching Mickey Mouse Clubhouse DVDs on the trip and knowing all the songs by the time we got home.  This was really a first for her in terms of trying to sing along. Hearing her sing, “hot dog, hot dog, hot diggity dog” is priceless;
  3. Riding “It’s a Small World” at Disney. It took me back to my own first Disney experience as a child.  I loved watching her eyes light up with delight.  When it ended she exclaimed,  “ride again!”  We did.  She loved it;IMG_6431IMG_6451IMG_6459
  4. Shortly after arriving at our Disney hotel, Dave asked the concierge about getting a handicap pass for our stroller.  Not only did he proceed to book everything we wanted to do in advance and give us guidance on everything we needed, but he showed up at our door 30 minutes later with a Minnie Mouse doll for KB.  As he handed it to me he said, “we hope your daughter has a magical stay at Disney”; IMG_4267
  5. I knew that I wanted her visit with Ariel to be extra-special.  We decided to take her to a shop to pick out a new dress and have glitter sprinkled in her hair.  Ariel was so excited to see that KB was dressed like her and made the visit memorable for all of us.  As I was taking photographs I saw the look of pure joy on KB’s face .  That moment brought tears to my eyes and a smile to my face.  Yes, this was where we needed to be at this moment.  As we pushed her away in her stroller, she looked at her dress and said, “This dress is really cute. I am a mermaid”;  IMG_7253IMG_7202IMG_7246
  6. Bibi was with us everywhere we went and got to enjoy all the sights and sounds, even getting a little glitter on her head;IMG_6801
  7. Seeing Dave covered in glitter from head to toe from carrying and dancing with his princess;IMG_6779
  8. Seeing Dave and KB dancing together in her beautiful princess gowns;IMG_4563IMG_6488
  9. We took her to a character breakfast even though we knew she might be afraid of life-size characters.  She was scared but we told them she just wanted to wave so they didn’t get too close.  By the time Daisy Duck came by she was less afraid and would reach out to hold my hand for reassurance.  It was very sweet how she held my hand and also very brave for someone who was completely over-stimulated; andIMG_4575
  10. Seeing Disney through the eyes of my daughter. Sometimes it’s best to jump in the car and drive to Florida, in the direction of Disney, with no particular plans but to feel sunshine on your face, eat ice cream, and laugh. As Disney himself said, “Adults are only kids grown up, anyway.”  After a very tough year of being more grown-up than I’ve ever imagined, it was fun to feel like a child again, if only for a few days.IMG_6478IMG_6372IMG_6378IMG_7273IMG_7179IMG_5836IMG_5436IMG_4434IMG_4576IMG_6130IMG_6156IMG_4164

A Year in Review (2014)

Yesterday is history. Tomorrow is a mystery. Today is a gift.  That is why it is called the present. – Alice Morse Earle

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It’s true that your life can change (for better or worse) in the blink of an eye, only to realize you spent your prior days focused on a future that may never exist.

Learning to live in the present is not easy.  Our lives are filled with clocks,  calendars, and deadlines.  It is nearly impossible not to think about the future.  And not just tomorrow or the next day, but that distant future that lures us in with false promises of happiness.  For most, “someday” is that glorious day when all our dreams come true and the troubles of today fade away.

It is such an enticing place that I have no doubt that most people cannot help but smile when they say the word “someday.”  Up until a little over a year ago, I was always dreaming about “someday.”  I remember thinking someday I will have more free time, find a more fulfilling job, have my house exactly the way I imagine…

On Friday, August 30, 2013, at around 7:30 p.m. my glorious someday ceased to exist as I received the devastating news that my daughter is  dying of an incurable metabolic disease.  In an instant, someday became so scary and painful that my mind tried to obliterate the concept entirely.  I hated that day and never wanted to see it.  I wasted so many years fantasizing about a day that I now dread with every fiber of my being.

My best analogy I can think of that most accurately describes in words the challenges of the past year requires an imaginary exercise:

You’re asleep and having your normal dreams when all of a sudden you are thrown into the middle of a big, cold ocean.  It’s really stormy, huge waves keep crashing over you, and you’re all alone.  You’re not the best swimmer, but somehow you don’t drown even though you are very fatigued and scared.  You are in survival mode.  You don’t remember how you got there, nor do you think about how long you’re going to be there.  You are there and you will die if you stop swimming.  Sometimes you tell yourself that you are asleep and it’s all just a nightmare, yet it’s not.  It’s beyond your understanding, but it is really happening.

You pray and ask God why this is happening?  Is this part of His plan?  In time you will understand His plan a little better and learn to trust it more than question it. And by doing so, you will find some peace.

Although nobody can pull you out of the water, many boats pass by and give you support (prayers, a life vest, encouragement, a boat, an ore, a compass, food, a fishing pole, water, etc.).  The boats that help far outweigh the ones that don’t.   Slowly but surely you become more familiar with your surroundings.  You are still vulnerable to the elements and storms, but you are paddling your boat the best you can one day at a time.  Over time you meet others in that vast ocean; people just like you.  You are not alone.

Navigating rare disease is much like learning to survive alone in the middle of a big, stormy ocean.  You really are left on your own to learn how to survive.  The sad reality is there are many barriers in our healthcare system.  Sure, there are benefits, but there is nothing worse than when the system fails your three year old. Sometimes in life you have to be your own life preserver.  And if you do it the right way, you may have to the opportunity to help others along the way.

I have learned a great deal about myself this past year.  It is amazing how little you fear when you are face-to-face with your worst fear.  After reviewing our work for 2014, I feel good about our accomplishments.  This list confirms we are not only surviving, which is a major accomplishment alone, BUT we are fighting.  And, based on the comments and letters I’ve received from so many this year, we are also helping others.   I have no doubt that God is with us on this journey and fully trust that His plan is far better than my once imagined “someday,” for better or worse.

A Year in Review (2014)

Advocacy

  • First article about our family was published in The New York Times, When the Diagnosis Is Rare, Parents May Know More Than Professionals;
  • Hope for KB sign campaign has received hundreds of photographs from around the world and from several notable celebrities, including Courtney Cox, Josh Hopkins, & Colin Hanks;
  • Made a short video about rare disease to share with Congress and on social media;
  • Encouraged individuals to write to Congressional members and ask them to join the Rare Disease Caucus. To date, Rep. Brett Guthrie, Rep. Andy Barr, and Rep. John Yarmuth have joined;
  • The Kentucky House of Representatives issued a Citation for Rare Disease Day (2013) and we took Katherine to the House floor to give a face to rare disease as the Citation was read by Representative Sannie Overly;
  • Hope for Katherine Belle has established a good following through social media networks, including Facebook, Instagram, and Twitter;
  • First blog post published on January 27, 2014.  To date we have published 31 posts detailing our journey.  Total reach is 45,049 views in almost every country around the globe;
  • Invited by the Rare Disease United Foundation to be included in Beyond the Diagnosis Art Exhibit at Brown University’s Alpert Medical School. The exhibit will travel to medical schools and hospitals across the country as a way of raising awareness about the many unmet needs of the rare disease community;
  • I have been invited (and accepted) to serve on the Board of Advisors for NGLY-1 Foundation and RUN (Rare and Undiagnosed Network); and
  • Dave offered legal assistance for several families (pro-bono) in their insurance appeals for genetic coverage.

Medical

  • Exhausted all testing at the Cleveland Clinic and received a 90% diagnosis of Infantile Neuroaxonal Dystrophy (INAD); received a third opinion from an INAD expert in Oregon of unlikely for INAD;
  • Appealed insurance denial for INAD test (won);
  • Researched every article available for INAD and similar diseases and performed genetic research on both sides of our families;
  • Participated in our first clinical study (NC Genes) at UNC – Chapel Hill.  We are awaiting whole exome results from this study (July 2015);
  • Second whole exome test through GeneDx.  Awaiting results (April – at the earliest – 2015); and
  • Raised $15,680 on KB’s GoFundMe page for whole exome, medical expenses, and travel; and
  • Established emergency care at the University of Kentucky following seizure activity in December. KB is now on seizure medication.

I have crossed paths with so many inspirational people and organizations this year – people whom I never would have met in my previous life.  So many friends, family, and strangers have helped in every single step of 2014.  Nothing was accomplished single handedly.  Nothing.  We have been blessed with phenomenal doctors, lawyers, nurses, techs, geneticists, politicians, clergy, therapists, this list goes on and on.  All the helpers of the world have shown up to help us during our crisis.

As for now I can tell you that Katherine is a very happy child who brings us far more joy than we imagined possible.  She is bright, funny, strong willed, fiercely independent, and delicate and dainty but tough as nails.  I miss her when she’s sleeping, laugh with her when she’s awake, and love watching her personality develop.  She’s my best girl always and forever.

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Learning to live in the present is a hard earned gift – one that has changed my life for the better.  My once “someday” has become my every “today,” and each day is an incredible gift. I look forward to sharing our days and a few goals with you in 2015.  Happy New Year!

A Father’s Love

If truth be told, my bond with Katherine came about slower than Glenda’s. In my defense, she had ten months of bonding while Katherine was in utero (whoever said it was nine months is a liar). And, if Katherine’s own childhood is any indication, Glenda also had a lifetime of practice nurturing baby dolls, changing their diapers, dressing them, feeding them and tucking them into bed with sweet kisses and “night-nights,” groundwork for this specific mother-child bond.

As for me? Well, before Katherine, I had zero experience changing diapers, dressing, feeding or holding an infant. My “doll” experience consisted of Mego Hulk smashing Mego Superman over the head with my sister’s doll house in an epic battle for the ages – or at least the most epic battle since yesterday’s.

As far as the pregnancy part of fatherhood was concerned, I spent it with a feeling of complete uselessness and “getting-in-the-way-fullness.” Then, suddenly (or so it seemed to me, though an eternity to Glenda) there Katherine was, screaming at me.

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She seemed so small and fragile – except for the screaming at me part, which seemed large and dangerous. She quickly let me know that my ten months of uselessness were not ending with her birth, just taking on a new form.

It seemed wholly irresponsible of the hospital, but after a day or so, they sent this little stranger home with my recovering wife and me. I hoped that “rear her to be President and Nobel-laureate” was the standard Glenda was setting for her care of Katherine, but my personal standard of care at this time was “just keep her alive.”

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Don’t get me wrong, I would have run into a burning building to save Katherine from the moment she was born, but, as I said, our true bond had to develop. At first, we were strangers looking at each other; me trying to figure out what to do, and she trying to figure out where mommy went and why mommy had left her with this well-meaning boob (and not the kind that then dominated Katherine’s thoughts).

I cannot tell you when the bond was formed, but I can tell you the moment I realized it had. I was changing Katherine’s diaper and making funny faces at her, hoping for a grin.  Then she laughed.  Not an “is it gas” smirk, but a full-on belly laugh. The kind of laugh Glenda has (for the record, Glenda does not have an “is it gas” smirk, only a full-throated laugh). I literally jumped in the air out of excitement (I use “literally” correctly here, as I did, in fact, jump). I had heard and made an angel laugh. I called my wife, who didn’t understand my excitement. It was just a typical day to her, but I was struck by the knowledge that at some point during those early sleepless nights, between diaper changes, while soothing tears and dodging projectile vomiting, I had fallen hopelessly in love with this little girl. At that moment, I became “daddy” — and to the most wonderful girl who has ever been or ever will be, no less.

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Since then, our bond has only grown.  I find myself rushing home from work with barely contained excitement at getting to see and play with her. The best part of my day is when she hugs and kisses me when we put her to bed. The second best part of my day is when she greets me coming in the door from work with her hands in the air like she is signaling a touchdown, screaming “Daddy’s home!” When she refers to herself as “Daddy’s baby girl” I am filled with joy and pride.  When she leans against or rests her head on me while watching Daniel Tiger, my seconds stretch to infinity; in those moments, all is right with the world and I am calm.

Katherine nurtures me. When she eats, she takes a bite, then offers one to daddy, feeding it to me by hand.  Katherine offers me blankets and her beloved stuffed bunny named Bibi to hold (she has a many stuffed bunnies, all of whom are named Bibi: Bibi; Other Bibi; New Bibi; Itty Bibi; Other New Bibi; and Other Itty Bibi).

Katherine takes comfort from me when upset, frustrated or hurt, and listens to me when I tell her she needs to do something. But Katherine also orders me around like a trained pet. “Daddy fix it!” “Daddy get wawa!” “Daddy throw ‘way lady bug!” (she has taken an aversion to the lady bugs that occupy our house and thinks I throw them away in the trash).  And, most often, “Daddy sit!” (pronounced in an exaggerated southern drawl as a two-syllable word, “see-it”) followed by her pointing to some location where I am supposed to do so. On “Daddy days” (when mommy sleeps in and daddy takes the helm for the morning), she likes to comb my hair and put bows in it, she tells me what she wants to wear (usually something Glenda has told her I would like) and tells me which items of my own outfit need to be changed.

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My days are filled with tea parties with that warren of stuffed Bibis and a baby doll named “Baby Blue Eyes.” I am a jungle gym. We play hide and seek and peek-a-boo. She hides her toys then asks me where they are with an exaggerated hand gesture, palms up and shoulders shrugged, followed by us looking frantically in places they obviously cannot be, acting mystified that they are not there. She wants me to chase her (crawling, not walking) and lift her up when I catch her (preferably upside down), over and over, cackling with laughter the whole time, until I give out (I need to do more cardio and curls — and by “more” I mean “any at all”). I am audience to her first choir performances.

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And my days are filled with dance. I hold her hands for the support she cannot give herself, and then she crouches and stands, crouches and stands, her head bobbing up and down. Sometimes it is to music we both can hear. Sometimes it is to music only she hears. These are bursts of pure joy, accompanied, music or no music, by her laughter. And always it comes with screams of “Dance! Dance!” and, of course, orders of “Daddy Dance!”

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My wife has often commented that she never remembers me laughing like I do with Katherine. I didn’t. Katherine brings out laughter that I have never had. Not chuckles, but raise-the-roof, tears-in-your-eyes belly laughs — an echo of the laugh I first heard from her that day at the changing table.

Daddy is Katherine’s comforting plaything. I am her biggest Bibi. I am nurtured and loved, just as I nurture and love her in return. My love for Katherine is different than any I have felt before or knew existed. It is unconditional and boundless, life-affirming and life-changing.

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I barely remember my life before Katherine and cannot imagine my life without her.

Then I got the call that told me I had no choice but to start imagining it; the physicians told me that Katherine was going to die. As I hung up the phone and went inside to tell all of this to my wife, my mind reeled with horrifying thoughts: Some day – it seemed soon — I would come home from work and she would be unable to raise her hands in that “touchdown” greeting; soon after, she would no longer be able to shout “Daddy’s home!;” no more crawling on me like a jungle gym; no more crawling away from me in chase; no more feeding me her food; no more eating it herself; no more peek-a-boo, or hide and seek; no more ordering me to “sit!;” no more night-night hugs or kisses; no more laughter;

And…no more dancing.

In a prior post, my wife told you that she did not express all of her fears to me in the months leading up to Katherine’s MRI. If this was to protect me from fear, it did not work.  I had plenty of fear. I knew something was wrong.  I saw a tremor in Katherine that no one else seemed to see or else dismissed. I saw the plateau in her development.  I saw the lack of balance.

My Google searches between Katherine’s first birthday and her MRI appointment a month and a half after her second were filled with things like “causes of ataxia and intention tremor in an infant;” “hypotonia;” “symptoms and causes of cerebral palsy;” “genetic causes of developmental delay;” etc.; and etc. I furtively searched the Internet, like a husband hiding something racy, but this was much worse. I was hiding my fear that Katherine had a serious medical issue. I hid it to shield Glenda from unnecessary worry, although – maybe because — I knew she already carried worries of her own.

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Don’t get either of us wrong. We spoke of our concerns and fears. We just did not voice their full extent, if we even comprehended them ourselves.

By the time we went for that MRI, I had convinced myself that Katherine had cerebral palsy. If so, the underlying brain injury would not be progressive. With PT and OT, I hoped she would one day be able to “re-wire” her brain so she could walk…and dance.

During part of the MRI process, my wife was allowed to stay with Katherine, while I was kicked out to the waiting area by the doctors (only one parent is allowed to accompany a child). I wandered aimlessly, until I saw a little chapel.  I have always found such places peaceful, so I went inside. I glanced at a prayer book and read a couple of the fear-filled prayers of other families. This was a children’s hospital, so they were all from other parents about their own “Katherines.” Many were facing far worse than the cerebral palsy I was sure Katherine had  … maybe had … feared she did not have … please, let her have. My mind went to my year of late-night “Googling” fatal conditions. I wrote in the prayer book “Please take care of Katherine. She is EVERYTHING.” I turned to walk out, but couldn’t. My hands started to shake. I had to sit down, but the pews were too far.  I sat on the floor, my back against the wall and cried unsustainable, hysterical sobs. Cries I did not know I had in me until exactly that moment. Tears I had never before cried.

Then I said something that I had never consciously thought, “please let me dance at Katherine’s wedding.”

I calmed myself, dried my tears, and walked into the waiting area, just as Glenda was walking into it, too.  I spent the rest of the day trying to comfort and reassure her, until I got the horrible call and had to cause Glenda more grief than most people can imagine. “Glenda, she is not alright, they say she is going to die.” I then spent the rest of the night and many days since trying to console an inconsolable, grieving mother, while finding a way to get through my own days, working, playing with Katherine, breathing, eating, and trying to maintain my own weakening grip on sanity.

Katherine’s continuing laughter has made these things possible.

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That first time I asked to “dance at Katherine’s wedding,” the thought seemed simple. I wanted Katherine to be on her feet, able to walk and to dance.

In the days since, I have uttered these words many more times. Usually, I do so when I am on my knees, again crying unsustainable, hysterical sobs. Other times it is just a whispered incantation, my mantra.

It now means something different than it did that day. It is not that I want Katherine to be able to walk and to do so easily enough that she can dance. I do want these things, but my perspective has evolved. I no longer need these things.

It now means that Katherine is alive. It means that she is happy. It means that she has found love. It means that she still has those things that make her so special. It means I am blessing her union with a person who sees them, too. It means that she has someone to love her after I am gone. It means that the proper order has been restored to the universe; one where my sweet, smart and beautiful child lives on after me.

And that dance?  I no longer care what form it takes.  I do not care if she is dancing on her feet, or in a wheelchair. I don’t care if it is a head bob. I just want to see her happy on her wedding day, squealing “Dance! Dance!” and ordering “Daddy dance” one last time before someone else takes her hands.

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Katherine, my dear baby girl, I will hold your hands, support and dance with you all the days of our lives together. But, please, please, baby girl, let me dance with you at your wedding.

You can follow Katherine Belle’s story on Facebook.

 

 

 

A Mother’s Death and Resurrection

In August 2012, just one month after Katherine Belle’s first birthday, I found myself sobbing hysterically in my doctor’s office following a series of scary panic attacks. “Was there much stress in my life?” she asked. “Yes,” I responded. “My grandfather recently passed away and the chief of staff at work had suddenly died just two days ago.  And…and I am worried about my daughter.”

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At daycare, Katherine Belle made her mark in the nursery as the fastest crawler of the bunch, even earning the nickname “Flash” for her speed. She was reaching developmental milestones ahead of time and I recall worrying that she would be walking as early as nine months.

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Instead, as the months passed, I watched her peers, and eventually younger children, take their first steps while my daughter continued to crawl at their feet.  I felt silly to worry.  After all, she was only 13 months old … then 14 months … then 15 months.  Many moms reassured me that their own children did not walk until later. My husband’s aunt did not walk until she was almost two. Research reassured me that walking as late as 17 months was within the normal developmental range.

“Any day now…” and “you will wish she was not walking when you are chasing her all over the place” were common phrases I heard during this time.  When she still was not walking by 15 months old, I decided to seek the assistance of physical therapy. I silently struggled greatly during this time. My motherly instincts told me that something was not quite right.  Despite weekly visits to occupational and physical therapists, she still was not walking as she approached her second birthday.

I sought solace in the outdoors, taking daily walks on my lunch break at work to observe and photograph the beauty around me.  Only then was I able to stop worrying and enjoy a moment of peace. Photography was my therapy, my outlet, my voice. I looked for hope everywhere and would take a photograph to remind myself that hope existed and was right in front of me; however, I needed my camera to show me.

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But still, there were many lonely, stormy days.

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I did not want to worry my husband too much with my fears.  Truthfully, I could not even say what I feared, except that I just had a feeling that something was wrong.  What, I did not know? I held out hope that she just had low muscle tone, which she obviously had. And sensory processing issues, which she had as well. But as she approached her second birthday, I began to ask myself the really hard questions.  Why wasn’t she walking?  Would she ever walk?  Is there something more we should be doing? Is there a more serious underlying issue?

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At her two-year appointment in July, her pediatrician nervously said, “And now for the hard stuff of today’s visit.  I am concerned that she is not walking independently.  Did you have a difficult birth, any head injuries or an accident?”  “No,” I responded with a lump in my throat.  “Well,” he continued, “I want to refer you to a neurologist just to be sure. She really should be walking at two years old.”

In August, we met with two neurologists and told them her history.  They agreed it best to perform an MRI in a couple of weeks to see if there was anything going on in her brain.  We were out of town and decided to visit the local zoo the next day to lighten the mood and have some fun.

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It was blistering hot that day, so I took Katherine Belle to stand in the shade while my husband stood in a long line for tickets. We were sitting on the curb when a young man in a wheelchair looked over at us and backed up beside us.  His name was Donny and he asked how we were doing.  We made the usual chit chat about the weather and the zoo.  He asked where we were from and why we were in town. I told him we were visiting the local hospital because our daughter could not walk and we did not know why.  He shared his personal story with me.  There were terrible complications during his birth. He died briefly before being resurrected.  His mother struggled.  There were many surgeries. His life had been very difficult, but he was alive and telling me his story. He had strong faith in God and believed there was a reason he had been brought back to life.  His body may have been paralyzed but his mind was sharp and he was very articulate.

Then he said something to me that I will never forget: “I knew you were a kind soul and that you would not be afraid to talk to me because of my condition. I believe God put us together today so I could talk to you.”  Lastly, he looked me in the eyes and said, “Everything is going to be okay.” A moment later his guide came up with their tickets and he was gone.

I sat on that curb and cried. I cried so hard that I could barely breathe.  I felt as though Donny was the first person who truly understood how much I was suffering — even more than I realized. At that moment, out in the open and in front of a very crowded zoo entrance, I let it all go. A year’s worth of worry and anxiety flowed out of my body.  My husband soon appeared and took me to the gift shop where I was able to gain some composure.

In my husband’s January 27, 2014, post, “Faith. Hope. Love.,” he describes what followed next:

On Friday, August 30, 2013, I received a phone call that would forever change my life and the lives of my beloved wife, Glenda, and daughter, Katherine Belle. Medical terminology and nuance aside for the moment (medical terminology and nuance will fill future posts), the call was to tell us this: your daughter is going to die. This was not in some philosophical sense that “we are all going to die,” or a homily that “no one is promised tomorrow.” It came with a medical explanation of how she was currently dying, and the only promise was that tomorrow — or tomorrow’s tomorrow — would never come for Katherine.

I had prepared myself for bad news, but nothing prepares a mother for the news that her child is going to die of a rare genetic disorder.  Now I fully understand why the mind erases tragically painful moments.  The pain is enough to kill a person.  As my legs gave out beneath me, I fell to the floor in utter despair and heartbreak, screaming at the top of my lungs that this was not really happening, I have no doubt that a part of me died with this news.

I do not remember much after that moment (and would not remember much of the next few months), except looking over at my daughter on the floor beside me and seeing her sweet smile.  I felt dead and was told she was going to die, but she was alive in that moment. She was hungry. She needed her diaper changed. She wanted to hear a bedtime story and hug mommy and daddy before going to sleep.  A voice told me that I had to stand up and take care of my daughter.

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I let Katherine be my guide each day.  I would ask her what she wanted to do and we simply did it.

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Each day became a little easier and my breakdowns came less frequently. Once again, I turned to my camera for comfort.  When I looked into the lens, I was living in that frame.  There is no tomorrow in that moment; just that second captured for all time.  I can blur out the background and focus on my daughter’s smile, the twinkle in her eyes, the space between her two front teeth, the dimple in her cheek or her little hands splashing in the water.  The world stops and I am at peace.

At the end of each day I download my photographs.  They show me a happy girl.  Despite my grief, I see that I am giving her the life she deserves.

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I do not know what tomorrow brings.  None of us do.  I believe in science, prayers, hard work, positive thought, and the healing power of love.  Each day I share my photographs with friends and family and tell them a story that does not always require words, and that sometimes cannot be expressed with them. It is a story of faith, hope, love, and determination.  As we continue ahead on our journey toward a diagnosis, I see a brave and thriving girl who is progressing, not regressing.  I see a happy and joyful child who meets every obstacle or challenge with the biggest smile and the most positive attitude. I see a future with many more photographs of accomplishments, milestones, and laughter. In all of my pictures, I see faith, hope and love.  Above all, I see an abundance of love.

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The past few months have been excruciatingly painful and tough, but I have learned a very valuable lesson: You never know what the next second of your life will bring.  My daughter guides me daily and reminds me that each moment is precious. Each day is a gift. She has taught me the significance of the quote, “We do not remember days, we remember moments.”  I have learned to enjoy and live in the present because it truly is the only moment that matters.

Part of me died in that Cincinnati room, but I find myself resurrected. I am a new person with a new perspective — and I have the sweetest little girl to guide me in my new life.