Is this a date?

It's 7:45 a.m. on a brisk November morning in Denver.  Suzie and I are sitting at a small table for two at Panera on Colfax Ave enjoying a quick breakfast and chatting.  Our conversation ranges from the presidential election to family vacation to what our next vehicle might be when we replace my car.  Next to Suzie's coffee cup sits a round, black, restaurant style pager with gently blinking red lights.  Across the street is Children's Hospital and Kinley is about 15 minutes into a 60-90 minute MRI scan of her spine.  The pager is there so the radiology nurses can let us know when it's time to return to the recovery room and be there when Kinley begins to awaken from the anesthesia.  This appointment is one of several exams that are scheduled for November and all of them are leading up to the main event which will be spinal fusion surgery on January 17th.  Kinley has developed scoliosis over the last couple of years and the curve has progressed to the point where surgery is a necessity.  The next leg of our journey as parents of a special needs child is beginning.  Though the circumstances weren't exactly ideal that morning it was actually nice to spend the time together at Panera.  We haven't been able to get out much as a couple lately which made me wonder was this a date?  Hmmm.  Later that day we joked with Kinley that we had gone on a date.  Not sure she was amused.  What I do know is that after 18 years of marriage I still love hanging out with Suzie..............even when we're "on call". 

Children's Hospital Colorado

One of the reasons we moved to Denver in July 2011 was to live in a city with a world class childrens hospital.  We have been to Children's Hospital in Aurora several times since our move and our most recent visit was to meet with a new team of neurologists.  We had previously been to the MDA Muscle Clinic and Metabolic Clinic at Children’s and were really impressed with everyone that examined Kinley and talked to us about her condition.  This new team is part of the Mitochondrial Clinic which is a specialty clinic that focuses specifically on mitochondrial disease patients so we were excited to hear what they had to say about Kinley.  Dr. Abbie Collins in particular was amazing with Kinley and gave her the most thorough neurological exam I believe she has ever undergone since the onset of her symptoms in 2002.  We left the appointment with a much better understanding of the three primary physical issues that Kinley is dealing with (Parkinsonism, Myoclonus, and Ataxia) as well as learning about some new strategies that could possibly help Kinley improve her quality of life.  During this visit, as well as a recent trip to her pediatrician, we learned that Kinley has gained 20 pounds over the past year which is awesome!  In spite of her neurological issues her overall health has been very good and for that we are extremely grateful.  We still don’t know what the long term prognosis is for Kinley but we are confident that we have some of the brightest minds and compassionate hearts in pediatric neurology on our team and that is a great feeling.

http://www.childrenscolorado.org/

Children's Hospital Colorado once again has been ranked among the nation's top children's hospitals in the U.S. News & World Report 2012-13 Best Children's Hospitals rankings, now available online at www.usnews.com/childrenshospitals. Children's Colorado has been ranked in all ten specialties. High rankings in a minimum of three specialties qualified Children's Hospital Colorado for the 2012-13 Best Children's Hospital Honor Roll, a distinction awarded to only 12 children's centers nationwide.

Fathers Day road trip

This past Sunday I once again took part in what has become a Father’s Day tradition for me since 2006.  I drove Kinley to MDA Summer Camp and left her there with a wonderful staff and other kiddos to have a week of fun that didn’t involve me at all.  Kind of ironic I guess that Father’s Day each year marks the beginning of a week where I don’t have to be a father at all.  Don’t get me wrong I adore Kinley and love being her dad but this is a week that I look forward to all year long.  Taking a break from dad duty and caregiver duty is a real treat and I take full advantage of the down time.  This year was her first time going to camp here in Colorado and the facility is just off of I-70 near Georgetown.  After getting her settled in her cabin there Suzie and I went on to Breckenridge for a few days of biking, napping, eating, gondola riding, hiking, napping, eating, shopping, strolling, and just generally goofing off.  I loved hanging out with Suzie and just enjoying our “responsibility-less” time together.  As usual now is about the time during this week when I start to miss Kinley a little and by Friday morning I will be very excited to see her again and find out about all of her camp adventures.  Hopefully she will have a big ole hug for her dad when I arrive.  If she doesn’t……….well I’m gonna give her one anyway.  Cheers!

Fun on the diamond

I love baseball.  Some of the greatest memories of my youth involve playing baseball at Southwest Boys Club and West Urban in Wichita, KS.  It is a wonderful game that encompasses skill, speed, courage, power, and strategy.  It also has a joyous emotional component that comes from being played in the spring and summer when the leaves are green, skies are blue, and the sun is shining.  This spring and summer I have been given the opportunity to coach two different baseball teams.  The Red Sox are part of an adaptive baseball program in Denver through Sports Made Possible (http://www.sportsmadepossible.org/) and Kinley is on the team.  A lot of the kids get around the bases in power wheelchairs or with the aid of a volunteer helper pushing their manual wheelchair or holding their hand while they walk or run.  Most need assistance with every aspect of the game including holding and swinging a bat or  throwing a ball.  Still they play the game with an excitement and enthusiasm that is an inspiration to everyone at the ballpark.  These kids are so thrilled to hear their name called by the announcer when they come to bat and they are smiling from ear to ear when they cross home plate.  They are incredible.

My other team is a group of typical fifth and sixth graders and the truth is I haven’t even met these players yet.  I volunteered to be an assistant coach through the Parker Recreation department and a few minutes later I was a first time head coach. J  I am excited about this experience and next week will get my roster and schedule so I can begin the journey.  Though I’m a little overwhelmed with all of the details and responsibilities I have to say there is one primary goal I have for the kids this summer.  I hope that they will play baseball with the same joy, attitude, and spirit that I see in the Red Sox.

Play ball!


Another great adaptive league is in Wichita, KS and they do a terrific job as well.
http://www.miracleleagueofwichitaks.org/

May-day, May-day........we have a Kinley!

Today was Kinley’s 12^th birthday.  12.  Wow……….next stop teenageville.  Well I’m happy to report she had a fantastic day complete with presents, well wishing phone calls from family and friends, and of course cupcake treats with classmates at school.  I definitely had a lot going through my mind today as I took it all in.  This  birthday also marks an anniversary for me in this journey as a special needs dad.  Ten years ago today was the last birthday she had where she could walk.  In fact at that time she hadn’t started showing any symptoms at all so you could say it was her last “normal” birthday.  Oh how I wish I had burned those birthday images much more clearly into my brain with photographs and videos but it never entered my mind that day in 2002 that things would never be like that again.  Today though I also thought about how grateful I am that she is healthy, continues to grow, and shows no signs of her disease progressing. 

Also today as if the number 12 wasn’t enough to try and get my arms around we also took Kinley to a transition meeting at the middle school she will be attending next year.  Middle school is something that we have always viewed with some worry and trepidation where Kinley is concerned.  Will she continue to make new friends?  Will her typical peers start to ignore her because she is "different"?  Will she encounter a bully for the first time?  I have to say that after meeting the staff today at Sierra Middle School I have a sense of calm and peace that Kinley will be just fine there and in fact continue to thrive.  During the meeting I noticed how Kinley interacted with these new adults that she had just met.  She was confident, personable, respectful, and also gave them a glimpse of her goofy sense of humor.  I am so proud of her for the young lady she is becoming.

Happy 12^th birthday Kinley!

My purpose is _________.

It seems a lot of people my age tend to ponder the idea of what exactly their purpose is in life.  I used to believe my purpose needed to be tied somehow to business or some outside activity that benefited other people or society.  Over the last few years however I have come to wonder if my purpose really isn’t just to be a great dad and caregiver for Kinley while she needs it the most.  At this time of my life I can’t think of anything more important than being present for Kinley as much as possible and also trying to help my wife with all of the challenges that we face day to day. Maybe for right now that is all I’m supposed to be concerned with and then in a future stage of my life I’ll have a different purpose where I can impact other people.  I've often thought what if I would have been a lousy dad to a “typical” child and perhaps I'm better suited to raise a daughter with Kinley's needs.  If it’s true that our God given gifts are to help us fulfill our purpose then maybe mine are already doing just that.

Strength in numbers..........

Saturday March 10^th I participated in the Muscle Walk for MDA put on by our local chapter.  It was a great event with hundreds of people turning out to support MDA and the families that they serve.  Our team was small but enthusiastic and we had fun being together at the walk.   Obviously the primary goal of an event such as this is to raise money to help fight neuromuscular disease.  However there is another tremendous benefit to families like ours that attend and it can be very impactful in its own right.   What I’m referring to is the emotional lift that comes from congregating with people who are in a similar circumstance and knowing that you are not alone in this battle.  Sometimes I can go months at a time without being around other special needs families and everywhere I go i.e. the neighborhood park, the mall, school visits, etc are constant reminders that my daily routine as a dad is different than most other dads.  After a while it does begin to wear on me and it feels sometimes that I’m living an experience that no one else understands.  It is when I have the opportunity to just be in the presence of other families and specifically dads who are taking this journey right along with me that I feel “normal” again.  Some are farther along the path and some are just starting out but no matter what stage we are at it's great to have events that bring us together for a few hours so we can recharge and renew for the road ahead.

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.