Why did I say that?

Since I won’t have another opportunity to post on Leap Day until 2016……..

Last night I went to a basketball game at the high school Kinley will be attending assuming she survives the many perils of middle school.  I was chatting with a pleasant gent sitting in front of me and he asked if I have any kids that go to the high school.  My response was “I have a special needs daughter who is 11 years old and she will eventually go to Chaparral High.”  Afterward I wondered why I had led with the term “special needs” instead of just saying I have an 11 year old daughter.  Yes she has some physical and developmental disabilities that affect her daily living but do those limitations truly define her as my daughter?  I don’t think so at all and I’m perplexed as to why I felt the need to share the extra information with a total stranger.  Without getting too deep into some psychological mumbo jumbo I’m sure it has something to do with me developing a type of defense mechanism over the years.  Maybe if I describe her up front as my special needs daughter it will help to guide the conversation so they don’t accidentally say or ask something that makes me uncomfortable.  Recent examples would be “is your middle school going to be close enough for your daughter to walk there?” or “is your daughter involved in any extracurricular activities?”  Those are perfectly appropriate questions for people to ask if they don’t know our situation and I’ve had to answer or deflect (depending on my mood that day) those kinds of questions many times in the last few years.  I’m sure if I asked Kinley about this she would just want me to tell people that I have a beautiful 11 year old daughter.  Good advice indeed.

Kinley rides a Harley

As a native of Kansas I have always been drawn to all things cowboy including horses.  However I'm a little ashamed to admit that I have never actually thrown my leg over a saddle unless you count the ponies at Watson Park in south Wichita when I was kid.  So I was a little nervous when one of Kinley’s doctors suggested something called hippotherapy which is physical and occupational therapy done while on horseback.  At age 3 Kinley gave it a try while we were living in Kansas City and absolutely loved it.  She continued after we moved to Wichita and then took a break for several years while doing more traditional physical therapy.  She started again a few months ago here in Colorado and we think it has been great for her both physically and emotionally.  Why a horse?  Well according to the American Hippotherapy Association the “natural movements of the horse helps individuals with disabilities increase their functional abilities and achieve greater independence. The horse's movement translates through the body, strengthening various muscles. Horses are used because the pelvis of a horse moves in the same way as a human pelvis. This creates a movement pattern similar to human walking. The horse also provides sensory input that promotes increased motor function.”    

American Hippotherapy Association

This is Kinley riding in the outdoor arena at Saddle-Up Foundation in Parker, Colorado.  There is also a wonderful indoor arena for the colder days but I would have to say she likes the outdoor sessions the best.  Her horse is named Harley and they are pretty tight!  A physical therapist is on one side and a volunteer on the other side with another volunteer helping to lead the horse.  Just riding the horse is great therapy however there are all kinds of different exercises that can be done while the horse is moving or standing still.  One of Kinley’s favorites is to play catch with Suzie or me using a large beach ball while she is riding.  At the end of the session they even allow her to brush the horses coat and those movements are great therapy as well.  Kudos to all the facilities like Saddle-Up that offer hippotherapy as a way to improve the lives of kids with physical disabilities. Cheers!

Going to Holland

December of 2002 was when we really started to understand that Kinley was going to have some significant challenges for the rest of her life.  That realization landed on our psyche like a ton of bricks and we didn’t know how to handle it.  “What to do when your 2-1/2 year old stops walking, starts having seizures, and her brain MRI shows cerebellar atrophy” wasn’t a chapter in any of the parenting books we had picked up along the way.  Experts told us we were going through a grieving process and that it was natural to have all the feelings we were experiencing at that time.  Anger, denial, fear, sadness, etc were all present and accounted for if you had taken a daily emotional roll call back then.  However for some reason it was still difficult to express to our friends and family how we were feeling.  We were really grasping for something to give us perspective and help us move forward with a positive outlook.   Someone shared the following story with us called “Welcome to Holland” and it was amazing.

"Welcome to Holland"

By Emily Perl Kingsley, 1987.  All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans: The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.  Several hours later, the plane lands; the stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sometimes I still dream about Italy.  Like when I’m at the rec center running on the track that overlooks the gym and I see girls Kinley’s age running up and down the court at basketball practice.  Or when I drive by softball fields in the summer and girls are playing ball while their parents sip cold drinks and watch from their lawn chairs.  I’m sure there are wonderful ballet lessons and piano recitals in Italy as well.  But then I remember that I am in Holland and it truly is a beautiful place that God has chosen for me.  It has its own great activities and experiences to enjoy and I have found that you really can have a blast here too.

Stares and Smiles

It’s not polite to stare.  Didn’t our parents tell us that at least 71 times between the ages of 2 and 10.  One of the things I’ve learned the last 6 years is that a lot of adults seemed to have forgotten that piece of the etiquette puzzle.  Suzie and I have always enjoyed going out to eat at restaurants, shopping, etc and we still do today except now usually we have Kinley with us in her chair.  The stares are the most noticeable to me in restaurants as we pass other tables and booths on the way to our seat.  I’m sure they don’t even realize they are doing it and maybe it’s just a normal reaction to stare when a 65 pound child rolls by in a stroller/wheelchair.  My least favorite stare is almost always accompanied by a sympathetic head tilt and “you poor thing” facial expression.  The best stares are from other children as they are genuinely curious and I think that is sweet.  Sometimes they will ask their parent or even Suzie and I “why is she in a chair”?  Some people though really get it and I admire them.  Hopefully they are passing their manners on to their children, friends, and family.  When we walk by those folks they just smile really big at Kinley and say “hi” or “how are you today”?  Usually cashiers at grocery stores, retail stores, etc are awesome to Kinley and we love that.  So to all the special needs dads out there……..don’t sweat the folks that stare.  Just smile at them, say hello, and maybe next time they will do the same.

Mito what?

Here's the scoop, the lowdown, the 411.  In my 20's when I occasionally thought about my future as a father I never considered the possibility that someday I might be the parent of a special needs child.  The future held many exciting possibilities and trust me none of them involved seizure meds, a wheelchair, or an IEP.  However in the fall of 2002 my 2 year old daughter began to have symptoms that pointed to a neuromuscular disorder.  The formal diagnosis of Mitochondrial Encephalomyopathy didn't come until late 2005 but by then I already knew my life had changed forever.  I was going to be a "special" dad.  It's a challenge that I chose to accept instead of run from and it's also a badge of honor I proudly wear every day.  Life is what you make it.  Hmm.....I think Hannah Montana might have said that.  Now you can understand how in some ways my daughter is a typical pre-teen and in those moments I am a typical dad.


I hope to share some of the joys and challenges of being a "special dad" and probably will sprinkle in some sports, politics, and current events if it relates to that topic.  Also I have the good fortune to be married to a wonderful woman who is a great "special mom" to our daughter.  Love you honey!  Well until next time......  cheers!

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