Definitions Not Found in Wikipedia

Mikayla helping daddy with the Laundry

     When I was an adolescent & a younger man, I liked to think that I wasn't defined by anything.  I thought of myself as very adaptable, and I simply didn't like to "labeled".  I wanted to be known for many different things, and not one particular thing or another.  I had this thought as I was walking around the house doing a little laundry yesterday with Mikayla: "What DEFINES you?".  It came into my mind like you would expect to hear from a commercial on a marketing campaign like Nike.   So I decided to entertain that thought for awhile, and starting thinking that as I grow older I have more things in my life that define me.  I am defined as husband, as father, as son, as grandson, as friend, by my career, etc.  I am defined by the moments, days, and years of my life to this point.  Moments like what college I attended, the day I got married, and the flood of May 2010.  These moments have thus shaped my life and defined who I am.
    One such moment was hearing the doctor come in after our second ultrasound of the day with a specialist (when we knew something was wrong) and telling us that our baby had Dandy Walker Syndrome.  She explained to us what this meant for our child and the possible very difficult scenarios, and asked us at that moment if we would like to abort our child.  She then left to give us some time to think and talk it over.  Honestly, when she left the room I was in shock, and I know Heather was too.  I felt like I was in one of those war movies after the bomb goes off, and all you hear is the silence and the ringing in your ears.  Heather remained surprisingly calm (I thought she would break down), and we had a moment that would define.  We didn't believe in abortion as an option, but things are a lot different when you are the one sitting in that chair and it has become more real than a philosophical debate after a few drinks with your friends.  We said YES to Mikayla, and trusted that God had a plan for our lives he was yet to reveal.  I became defined in that moment as a parent of a special needs child.  So what defines us is not just those moments in our lives, but those moments in the lives of those who came before us.  The choices my grandparents and my parents make, define me as well.  I wouldn't be here if they had made different choices, and neither would Mikayla  Mikayla begins her life and journey with one more definition than I did.  She begins her life with the definition of special needs.  It will be up to her and God what she does with that definition.  I no longer run from my definitions, but I embrace them as part of who I am.  What truly defines me is Love.  Love for my daughter, my wife, my family, or my fellow man.  After all, "God is love." 1 John 4:8.
     So I leave you today with a fictional quote from John Nash, when he won the Nobel Peace Prize on his work on Game Theory in the movie A Beautiful Mind.   From what I understand, he did not actually make this speech publicly.  Nevertheless I love the quote: 

 "I've always believed in numbers. In the equations and logics that lead to reason; but after a lifetime of such pursuits I ask, what truly is logic? Who decides reason? My quest has taken me through the physical, the metaphysical, the delusional and back, and I have made the most important discovery of my career... the most important discovery of my life. It is only in the mysterious equations of love that any logical reasons can be found."

CLICK HERE if you would like to see the clip from the movie.

A special thanks today to all those who came before me, and even those of you who came after.  Thank you to my and Heather's grandparents, parents, siblings, and relatives.  All of you (both living and those who have passed), along with Heather & Mikayla are all my reasons for definition.
   

Being vs. Doing

Mikayla with her Stephen Curry basketball jersey

My father-in-law gave me a lecture series on CD called Customs of the World: Using Cultural Intelligence to Adapt, Wherever You Are. This has been a fascinating lecture series to listen to for me, because of all my travels around the world and studying of other cultures.  The lecturer David Livermore takes you though a series of cultural differences in an effort to improve the cultural intelligence (CQ) of the audience.  One of the lectures was on the Being vs. Doing Orientation.  The Being Orientation are cultures that emphasize contemplation and reflection, and values quality of life.  An example of a culture that is high in Being Orientation is Japan.  On the other end is the Doing Orientation, which are cultures that emphasize action and proactive behavior.  Doing Orientation cultures tend to value efficiency and results.  As you can probably gather, the United States is very high on the Doing Orientation.  We are a nation of doers on the go, that pride ourselves and being busy and strive for efficiency and results.  It is important to note that these are generalizations to an overall culture, and not everyone falls into one category or another.

This lecture in particular really got me thinking about our culture, and specifically our culture orientation as parents.  Generally, we are a nation of parents that emphasize this Doing Orientation. Heather and I as parents of Mikayla are very much in this orientation as well.  Mikayla goes from one therapy to the next, and we often come home with a list of "things to work on".  This list may include things like head & neck control, eating by mouth, getting her to push up with her arms, grasping, eye focus, and stretching the hamstrings, just to name a few.  Sometimes it can be overwhelming, and feelings of guilt would creep in if we didn't work on all of those things during our off times on weekends and night time.  We are determined to give Mikayla every advantage and chance we can to succeed.  It is our main focus with her.  That being said, listening to this lecture reminded me that it is also equally as important to sometimes just BE with Mikayla without agenda.  Sometimes, she just needs some snuggle time and some quality time with us to know that she is loved.  It reminded me of something our pediatrician told us early on.  He told us "there will be many voices telling you many different things on what is best for Mikayla because of her special needs, but you are her parents and will ultimately know what is best for her."  I didn't fully process what he said to me then, until I was driving in my car listening to this lecture on CD.  He was telling us that we are a culture of doers, and as such we will hear advice from many different people who are trying to help Mikayla.  As important as it is to listen and work with Mikayla, don't forget that sometimes we also just need to be with her.  Value the time we have with her, and reflect on the good times we have together as a family.  These times are also important to us, to give us the fuel to keep working with her towards important goals and milestones.  So my message today is, I love living in a culture that is of the Doing Orientation but let us not forget that there is real value in taking time to live in the Being Orientation as well. 

Any Given Sunday: Superbowl Sunday Edition

"We know that all things work for good for those that love God, who are called according to his purpose." Romans 8:28

I have been thinking a good deal about this verse lately, as it relates to something I hear from people quite frequently.  Heather and I will often have people tell us that "God gives special needs children to special people, and to those who are equipped to handle it."  This may be surprising to some of you, but I don't believe that.  I don't want to offend any of you, if you do.  I am just explaining what I have come to believe through my experiences, and through my understanding of the Romans Bible verse I shared above. 
My experience started in the Vanderbilt Hospital Neonatal Intensive Care Unit, or as many people call it, the NICU.  In the NICU, there were many children with all different kinds of issues.  Some of the issues ranged from very moderate to quite severe.  Many of these children, as you can imagine, are children with special needs.  The surprising thing to Heather and me was how empty the NICU was for visitors, especially on the weekends.  We figured the NICU would be packed with a bunch of parents visiting their kids on the weekends.  I mentioned this to one of the NICU nurses, and she told us that unfortunately many of the children are in the NICU because of choices that their parents made.  This was disheartening to me.  I by no means want to imply that many of the parents of the babies in the NICU are bad parents.  I don't know their stories, and who am I to judge?  The question that kept arising is that if God truly gives children with special needs to those who are equipped to handle it, why were there so many examples of parents who weren't?  I was really confused by the whole thing, until I got some clarity after reading Romans 8:28.
Romans 8:28 says that all things work for good, but it doesn't say that all things ARE good.  God can make good out of any situation, but he doesn't create every bad situation in our lives.  We are good at creating those many times, all on our own.  He gave us free will.  So here is what I have come to believe.  God will make good things come of our situation with Mikayla, and he already has because we love him.  I don't believe God only gives special needs children to those who are equipped to handle it, and I will tell you it doesn't make me feel any better when you tell me this.  I would rather hear you say that God will bring great things about in our and her life, if we continue to love and trust in him and his plan for our lives. 

Stress Fractures

Photo of Mikayla taken by Sonia Fernandez Leblanc

     I have been listening to a podcast lately of a collection of Ted Talks.  Ted Talks are a series of talks about a different range of topics, and its slogan is "Ideas Worth Spreading".  One such talk was about stress and its effects on our health and well-being.  The woman who gave the talk spoke about a research study that was done on stress.  It followed a number of people who were listed as having high levels of stress.  Without going into all the details of the study, the study showed that stress can have harmful effects on your health.  This in itself is not all that surprising.  What was surprising from the study is that it was only harmful to those people who thought that stress was harmful to their health.  It had relatively no adverse effects on those who did not believe stress was harmful to them.  Let that sink in for a moment.  This is a testimony to the power of our thoughts and attitude.  Our thoughts on what we believe stress to be, fractures us.  We can literally think and believe ourselves into a certain state of mind and health.  I believe God must have created us this way to show that our spirit has a great effect on our being.  I highly recommend watching this Ted Talk if you are interested.  It is done by Kelly McDonigal, and here is the link: http://www.ted.com/talks/kelly_mcgonigal_how_to_make_stress_your_friend.html.
    People in our circles will often tell Heather and I that: "It must be so stressful having a special needs child.  All the worry, all the heartache, all the extra daily tasks you have to perform with/on your child."  I remember thinking when I heard this, that I never really think of it as extra stress.  It wasn't until I heard the results of that research study when it really hit home with me that Heather and I need to always maintain a healthy and positive frame of mind about things.  Especially when it comes to Mikayla, since she is probably the greatest addition to the source of stress in our lives.  However, we won't let the stress have adverse effects on our lives because we don't view this stress as being harmful.  Whatever stress there is, she has brought more joy, faith, & gratitude to our lives with simply her presence.  I am sure we all have stress in our lives, so the message today is to not let stress fracture you.  Embrace it for what it is, and instead let it fuel you to greater heights than you thought possible.

Sports - Higher Authority

Mikayla and I in the hospital watching the NFL Draft.

Before I begin, some of you have been asking how to subscribe.  There is a box in the right hand corner that says "Follow By Email".  Type in your email address there, and it should give you directions and how to have the posts come directly to your email.  Thanks for reading!

   One of my favorite shows to watch with Mikayla and Heather is the show ESPN E:60.  If you have never seen the show, a group of ESPN sports reporters gets together and share some 10-15 minute short films about stories around the sports world.  Sometimes the short films are about NFL, MLB or NBA stars and their lives off the playing field/court, and other times they are just inspiring stories about everyday people who have had a special connection with sports in their lives.  These are usually the stories I most connect with, and often times they have stories about a child with special needs who has inspired others with his/her story.  This is one of the reasons I connect with the show so much.  I remember watching the ESPN E:60's before we had Mikayla, and it is amazing how I watch the shows with such a different lens now.  Whenever they would share a story of a child with special needs with their parent, I remember watching the show and wondering how difficult it must be to take care of that child full time.  It seemed to be a burden to them, but what made their stories inspiring was how they came through it all together with a positive attitude.  I must say things are different for me now as I watch these shows.  I now connect on a deep personal level with these people, and can understand more fully just where they are coming from.  These stories are no longer just a show for entertainment, but accurately represent my reality now.  One such story on ESPN E:60 was Davan Overton who actually has a Dandy Walker Variant, which is a form of what Mikayla has.  Watching this story was honestly pretty difficult to watch at times.  Many parts of the piece are pretty low and difficult to witness, but the ending gives you that hope that sometimes you just need to keep you going.  I don't want to give away too much of the story if you haven't seen it.  I recommend you watch it if you haven't seen it before, and here is the link to the story: http://espn.go.com/video/clip?id=9898489.

     I am a big sports fan myself, and I have always been connected to them as a way to enrich our lives.  Sports represent the struggles & successes of real life, and the work and determination it takes to achieve a goal.  Mikayla will always be different like Davan, but that doesn't mean she can't live a life inspiring to others like Davan does.  She has already make me a better person, I guarantee you that.  It is my hope that Mikayla will live a full life in whatever that looks like to her.
     Last month we had the opportunity to visit my nephew Robert who lives in New York City.  He is a rambunctious 2-year-old who is full of life.  He is in love with sports, especially basketball.  The kid can dunk on his Fisher-Price basketball net, let me tell you.  One of the activities we did that weekend was head to the Jewish Community Center for his sports class.  In this class we got to see Robert and all his little friends run around the gym and try all different kinds of sports and activities.  At the end they played this fun game where they all ran around a circle of cones while the music played, and they would all stop when the music stopped.  Even the parents would join in, and the kids absolutely loved it.  I remember sitting there in their gym with a tear running down my cheek and my arm around Heather just praying: "Lord, I accept Mikayla the way you made her to the best of my ability.  However, if it is in your plans Lord I would love to run around in a circle with her someday." I am not sure if my prayer will be answered in this life or the next, but what a great reminder to enjoy the blessings we have and celebrate the small victories God gives us in this life.  So I will keep playing and watching sports with my baby girl, and if she is the little "Daddy's girl" I think she is, I know she will be a fan of sports as well in her own way.

Mikayla holding her football.

Speech Therapy for Kids?

First off, a big thank you to all of you for the kind words and support of my first post.  It means a lot. Over the Holiday break I got to attend one of Mikayla's Speech Therapy classes at the Bill Wilkerson Center at Vanderbilt.  In the class, there were a few young children anywhere from 5 months to 2 years old.  All children in this class were hard of hearing, although they had varying degrees of hearing loss.  A few of the kids had hearing aids, and another had a cochlear implant which we are planning to get Mikayla when she is a year old.  It was interesting to see all the kids of different ages learning the beginning stages of how to talk and hear sounds.  It was also nice for me to see some older kids, and how they have progressed with the things we work on with Mikayla and her hearing.  Mikayla does not recognize many sounds yet, but we are very hopeful the cochlear implants will help her.  Since she has other issues related to her Dandy Walker we are not entirely sure how she will do interpreting the sounds, but as Heather always says the most important thing to us is that she is able to hear the sound of our voices.
The most interesting part of the class came at the end when our Speech Therapist asked the parents some questions.  The therapy isn't just for the kids I suppose, we as parents need the therapy as well and the chance to talk to other parents with like experiences.  The first questions were pretty standard, but the last one was a real eye opener for me.  The final question was: "What do you want for your child?"  The other parents chimed in immediately with answers like "I want my child to not be held back by their difference, and to do normal things like go to prom." or "I want my child to attend college" and "I want my child to fall in love with someone who will love them for them."  As much as I want these things, and hope and pray for her development I just don't know what will be possible for Mikayla.  All I could say to the group is "I just don't know how to answer that question, and I want Mikayla to be the best she can possibly be.  I want to give her every chance to succeed to the best of her ability."  One of the hardest parts of being a parent of a child special needs is comparing your child to other children, and realizing they may never be able to do what other children can do.  It was an important realization for me sitting in that class to remember that the best thing I can do for Mikayla is to help her to realize her potential, whatever that may be.  Be proud of her accomplishments, and not allow comparisons to others to rob the joy of success.  This is also something I feel I can do better in my own life.  Celebrate the joys of my life, and to not compare my personal success with that of others.  With this mentality, I also feel like I can celebrate the joys of others and be truly happy for them, free from comparisons.
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Welcome to Dandy Walker Ranger

Welcome to my Dandy Walker Ranger blog.  Why this title to my blog you might ask?  Dandy Walker is a syndrome my baby daughter Mikayla has had since birth, and even inception.  Dandy Walker is a congenital brain malformation involving the cerebellum, and highlighted by extra fluid in the brain.  Dandy Walker is rare, and effects 1 in 30,000 people.  All this is to say, that Mikayla is a special needs child.  I chose Dandy Walker Ranger of course as a play on words with the old Chuck Norris (insert Chuck Norris joke of your choice here) TV show Walker, Texas Ranger, but I also chose this title because having a special needs child is a fight everyday.  Sometimes it is a fight for your child's development, sometimes with yourself in your hope and perspective, sometimes against ignorance and understanding, and even sometimes it is simply a fight against an insurance claim.  The fight is not totally easy, but well worth it as I have come to grow in love for my daughter Mikayla.  I promise you she has taught me more about life in her short existence, and will probably continue to than I have taught her.  I am sure this is true for most parents, but imagine this perspective is heightened when your child is special needs.

So what is the purpose of this blog?  Well I am not entirely positive yet.  Right now I simply want to share our story and experiences with you.  In some way I hope that this will be therapeutic in nature, as writing and journaling our experiences so often is.  In another way I hope you can relate and learn from my experiences, and I hope that you will share your comments with me often.  I hope this blog is as much about you as it is me.  Feel free to subscribe so you can see posts in the future.  Also, follow me on twitter @JD_Honeycutt.