The Moments - Chapter 20: Voting and Boating Beyond A Blue State of Mind

                As I reflect on (and sometimes over-analyze) the things my son says and does and our interactions together, I often zone in on one instance or conversation or a grouping of a few of them that seem to have a theme.  Sometimes (as in Chapter 16), I find myself simply looking back over one of those “perfect days” in which everything seemed so fun, mostly because Joey makes everything fun.  The last Saturday we spent together was one such day – not everything was planned, but everything was fun.  And, some of it seemed to have a theme, too.

                Joey and I did not spend the full morning together.  The only thing not falling into the “perfect day” category was that I had to work on this particular Saturday.  I space those occasions out as much as I can, but I needed to go my office for a little while before joining the fun of the day.  This was not a problem, since my girlfriend, Krista, was able and willing to take care of Joey for me.  As I put it to Joey, I needed him to take care of Krista while I was gone. 

While Joey was keeping an eye on her, Krista took him to the library for the regular Saturday morning Story Time held there.  It has become a regular activity for us when Joey is with me on a Saturday, and he loves it.  Our branch of the Nashville Public Library is also connected to the community center that serves as an early voting site for our area.  Joey and I had already visited it the previous Thursday to cast my votes for Nashville’s next Mayor and City Council.  Before Story Time began, Joey helped Krista cast her votes as well.  Joey, like most kids, enjoys pressing buttons for those taking him to the polls, but there is one thing he always aims for – the “I Voted” sticker.  If adults would only get that excited about stickers, we could improve voter turnout across the country!  After watching Krista cast her votes for, among other things, some seats on the Metro Council, Joey then heard from our own Council Member, Jacobia Dowell, during Story Time.  She visited with the kids and read a couple books as part of the program.  But it was not the last time that Joey would hang out with a Councilman before the day was done.

                Krista and Joey ran a couple of quick errands before returning to my apartment for the afternoon.  Among them was a stop at the Dollar Tree.  Krista took the “you can pick out one toy to buy” approach with him, and he took home a new squishy ball and slingshot.  My boy likes cool weaponry!  By the time I got home from work, they were already back at mine and Joey’s home, where Krista had fed him lunch and put Joey down for a nap.  We were all preparing for a fun evening ahead.

                After Joey woke up from his nap, he joined Krista and me in the living room to play and watch TV.  Krista had a couple of cards of paint samples from which she was selecting a color.  They were all in the gray and blue family and had complex names, as most paints do nowadays.  Still shaking off his sleepiness, Joey climbed up on our loveseat next to Krista where she showed him what she was doing and asked which color he liked.  Not pointing at one, he proudly declared, “Blue!”  Krista and I laughed, as at least six of the colors in front of him qualified as blue.  So, Krista narrowed it down for him, “Look at these.  Do you like ‘Prague blue’ or ‘native turquoise’?”  Still occasionally swapping “w” for “r,” we heard him choose, “Pwague blue.”  I guess he’ll know Prague through art before geography, courtesy of Sherwin-Williams.  After making his choice, Krista told him, “Ok.  I like that too.  I also like ‘Island of Saint Croix.’”  (I’m still just a fan of “blue.”)  Then, like he had written a guide for a map, Joey repeated in perfect pronunciation, “Island of Saint Croix.”  It dazzles me when he delivers words and phrases that a 3-year-old wouldn’t otherwise have any use for in such clear, confident tones.  He’s still my little boy, but he can speak beyond his years so easily.  I think our next inexpensive afternoon outing could just consist of walking through a paint store to let Joey quote color names. 

                The previous night, I had received an invitation from my friend, Councilman Duane Dominy, to join him and his family at a non-political gathering at a home on Old Hickory Lake hosted by some friends of theirs.  Krista and I knew we wouldn’t know most of the people there, but a change of scenery via an evening by the lake sounded like a great idea.

                When we arrived, it was obvious that we were on the boat-loaded side of Old Hickory Lake.  Whether docked or out in the water, there were several impressive crafts just within a short view – and plenty more as we had the chance to look farther.  Immediately after getting out of the car and beginning to walk toward the hosts’ house, Joey said, “Wow!  I didn’t know there would be boats!”  For the first couple of minutes, we could only assume that they were to be part of the scenery.  As soon as we approached the house and were greeted by our hosts, however, we were invited to join the next group taking a cruise on the lake.  I looked down at Joey to ask if he wanted to take a boat ride.  With a big, bright smile, he looked up and said, “Uh-huh, I do!”  So, before Councilman Dominy and his family had even arrived, the three of us were off to join a group on a high-powered pontoon.   Joey sat between Krista and me toward the front of the boat.  We had a great view of the other boats on the lake and the variety of houses lining the shore, and we felt every wave and bump as our captain slowed or sped the boat.  Joey enjoyed the whole thing.  He smiled in the sun as he watched what he could in and on the water.  Every time the boat slowed down again, he would say, “I want it to go faster again.”  And, soon enough, it would.  We spent about half an hour on the water before docking again.  Every minute of it was precious to see how fascinated Joey was by everything around him.  I love seeing the world as it passes through his eyes.

                After our cruise, we walked back up to the lake house to visit with Councilman Dominy and his family.  As he and I began a discussion of local politics, Mrs. Dominy and Krista quickly read each other’s minds and knew that they were both frequently surrounded by “our obsession.”  We chatted for a few moments while watching Joey explore the deck and pool area of the lovely house at which we were gathered.  After a few minutes, Krista and Joey and I went to eat and Councilman Dominy went to fish for a while.  He and his son headed to the dock, and the three of us headed to the serving table.

                After eating and visiting for a while, I told Joey that it was time to go home.  I said we were going back to the lake for a moment to thank Mr. Duane and say goodbye.  When we got down there, Joey got to experience “a first.”  Councilman Dominy and his son, Aaron, were happily fishing off the dock while another group was out cruising the lake on the boat that had transported us.  Joey was fascinated by what they were doing but didn’t say much.  Councilman Dominy offered Joey a small rod-and-reel that already had a line in the water.  Joey took it with an interested smile and said, “I haven’t been fishing before.”  He showed Joey how to hold it, and the experience just organically took off.  At first, Joey didn’t want to keep the line still, but he kept it in the water.  After a very few minutes, though, he sat down contentedly holding his line, watching the floats in the water, and further observing the lake that had already entertained him so much.  Though older than Joey, Aaron clearly enjoyed having another kid around for a while and offered his own tips and help as Joey became a part of the “sunset fishing crew.”  Joey sat down directly on the dock for a while and then, when offered to man the old-fashioned straight bamboo fishing pole, sat for a while on a small fold-out stool.  For several weeks prior, my son had pretty consistently remained in a high-energy, constantly on the move and all over the place mode but, in this scenario for the time we stayed with the Dominy boys on that dock, Joey was the most focused that I had seen him in a long time.  Even 3-year-olds respond well to the peaceful pleasures of life now and then.  Krista and I stood right behind them and enjoyed watching the whole thing.  Behind us, another fishing line had been left baited in the water and, all of a sudden, we heard some noise from it.  Since I was standing closest, I lunged down to reel it in and brought a decent-sized catfish onto the dock.  Joey enjoyed watching it flop around as I held the line on which it was hooked so that Councilman Dominy and one of his friends could transfer the whiskered water-dweller to their holding area.  While Joey was fascinated, he didn’t move away from his own post.  Barely a minute after the cat was secured, we saw a tug on Joey’s line.  Councilman Dominy and I coached and helped Joey to secure his pole and bring in what was on it.  At the end of the line was a nice-looking blue gill of about 6 or 7 inches in length.  Joey was excited and eventually barely touched the fish before helping Mr. Duane send him back into the water.  A few minutes later, we headed out, but Joey was glowing all night about his first round of fishing.  He may not understand the honor of Duane Dominy being a sitting Metro Councilman now, but he’s glad that he was sitting on that dock when we were about to say “goodbye” to Old Hickory Lake for the night.

                In his three-and-a-half years, I think Joey has had some really cool and some fairly rare experiences.  He makes the routine things in day-to-day life so much more fun to me, but I like being around and, I hope, being a part of some of the people and things that make life fun for him.  Who would have thought that in one day, Joey would read with one City Council member and then fish with another?  In the morning, he was helping cast votes, and in the evening, he was casting a fishing line.  Whether he pursues a life of formal public service, like some of that Saturday’s playmates, or not, I hope he will always, intentionally or unintentionally, keep making every day better for those around him.  Then, at any age, “the moments” will still be precious.

The Moments - Chapter 19: Amateur Night on Aisle 12

                As most young kids do, Joey makes routine errands more of an event when he is around.  A trip to the grocery store can be particularly enhanced if I make it with Joey.  Sometimes, he gives me an “aww moment” (see Chapter 8) but, in a shopping setting, he more often creates some “haha moments.”  Being the versatile comedian that he is, this may come in the form of trying to juggle items as I place them in the buggy, speaking about absolutely everything he sees, or telling me why he MUST HAVE something from every aisle we travel in Kroger.  About a year ago, he even tried to help me revive a phone call with my girlfriend.  I had called Krista to ask her something before we finished shopping, and strolled Joey to the side of the store that doesn’t always agree with cell phone signal.  At a point when I couldn’t hear Krista and thought the call had dropped, Joey heard me saying “Honey!  Honey!”  I then felt Joey grabbing my arm to take the phone and heard him yelling “Honey!  Honey!” in his extra-enunciated way.  At the time, Krista couldn’t hear either of us (but the folks looking through the freezer cases could). 

Last night, he added a new form of humor to Joey’s Krogering Revue – stream of consciousness.  Not that this is a foreign concept, but a tiny spark of detail prompting a random combination of thoughts in him makes me think that Joey is either a very talented comedian or a three-year-old who didn’t have much of a nap during the day, or both.  I will add the disclaimer that, before this short rambling began, I had leaned over for one of my own random eye-level conversations (a Kroger-time lesson in life) with Joey about how ashamed I was to be buying 12-packs of Cokes at such an awful price (seriously, two for $9 shouldn’t even be advertised).  He acted like he totally understood and kept confidently saying “Uh huh.”  So, as I leaned down to pick up two 12-packs of Diet Sprite, Joey first stated that “That’s not Coke.  That’s Sprite.”  To which I responded, “Well, Sprite is a kind of Coke.”  [That’s right, folks, this blog reminds us that Coke is a brand, a specific product, and a general category of beverage.]  As I then placed the boxes of Sprite cans in the buggy [Notice that I also didn’t flinch when twice including the word “buggy.”], Joey began a train of thought that just didn’t need to stop:

 

           Joey:  There was one Sprite… Uh-huh.  There was one Sprite between me and Mommy and Gamma.  We went to McDonald’s.

           Me:  Ok, cool.  Did y’all do that for lunch today?  Was it this day? [his frequent phrase for “today”]

           Joey:  No, it wasn’t this day.  Um…  I think it was about 20 years.

           Me:  (fighting the weird look on my face) Wait, you say it was 20 years ago?

           Joey:  Yeah, 20 years ago….  Well, maybe two years ago.  I just know we ate at McDonald’s and that was really cool, and I wanted to go to bridge over troubled water.

           Me:  (laughing a little) Well, yeah.  Who wouldn’t?

           Joey:  Yeah.

           Me:  So, you wanna buy some apple juice tonight? 

 

                I was disappointed that I didn’t have a good follow-up, but my 3-year-old’s newfound concept of long-range time rendered me a little speechless.  He has recently gotten the days of the week well-fixed in his mind and knows some of the usual occurrences on each day.  Apparently, broader spans of time are still a developing concept.  I await the day when he asks if we can go to Chuck E. Cheese, and I can come back with, “Why?  We were just there 20 years ago.”  We’d still go anyway.

Heading to the Slammer - To Get Kids Out of Prison

                There are two basic reasons why I, or anyone else, support an organization like the Muscular Dystrophy Association.  And, basically, it is the two general purposes they serve.  First, I want to support those individuals of all ages currently living with neuromuscular disease who need unique and expensive equipment and services to live independently and be as healthy as possible.  Also, I want to see the research being funded and facilitated by the MDA yield cures for those diseases so that those individuals can declare victory in a world where no one else has to suffer them.

                As I have written before, the blessing of my son’s good health and his ever-growing level of activity has served as a constant reminder of the goals of the MDA and the reality they seek to create for all children.  While I know that he could, one day, be diagnosed with one of the diseases that MDA combats, he is currently far from limited in his mobility.  One of the reasons I like supporting the MDA in my little way each summer is to help them create that future in which muscle disease doesn’t limit any child.  Before Joey was born, however, I had another child to inspire me on that mission – and she has some limits that Joey does not. 

                My second year as a jailbird, 2010, was the summer that things started coming together in my participation in the Lock-Up.  I started raising money earlier, built a strategy for seeking donations in various ways, and learned more about the specific ways that the Muscular Dystrophy Association serves those with muscle disease.  However, it was at the event itself that year that my heart truly glued itself to this organization and its mission.  In 2009, I didn’t get to stay at the event very long and did not get to meet the attending local patient, which the MDA Nashville folks usually bring in to serve as host for the day.  In 2010, that was not the case.  As I entered Fleming’s Prime Steakhouse (a fabulous restaurant near Vanderbilt University) and “turned myself in,” I was greeted by an adorable little blond girl named Emily.  Emily was dancing and skipping and wearing the brightest smile.  She, I assumed, was not a muscular dystrophy patient.  For the first few moments, I figured she was the child of another jailbird or an MDA staff member.  As I took a few steps in and around a dividing wall, I saw that Emily was leading me toward her older sister Sara.  Sara, who was 7 or 8 at the time, was our local MDA Goodwill Ambassador and hostess for the day.  Like her sister, Sara was an adorable blond girl with an unstoppable smile.  Living her entire life with Type 2 Spinal Muscular Atrophy, Sara and her family were very familiar with the services provided by the MDA.  Sitting in her electric wheelchair near the jail bars where each Lock-Up participant took a fun photo before hitting the phones to raise money, Sara and Emily were greeting all the jailbirds and thanking them for their support.  When I first approached them, I froze for a second.  All my life, I had seen Jerry Lewis featuring kids served by the MDA on TV and knew the title of “Jerry’s Kids” to represent those who needed the help of the MDA because they couldn’t enjoy all the things in life that many other children do.  But, now one of “Jerry’s Kids” was right in front of me and she and her family needed that continued support to deal with a rare affliction that I couldn’t begin to understand.  Also, she had a younger sister who had never known a reality beyond helping her sister with things that Emily (and me and Joey and countless other kids) could easily do.  I stopped myself from getting teary-eyed and walked toward Sara with a smile.  They, and kids like them, were the reason I was there and the reason I would keep coming (still are!).  I knelt down to chat with Sara while awaiting my turn at the “photo-bars.”  She was a charming little girl who seemed to have a very positive attitude.  Little Emily, at only 4 or 5 years old, was obviously very supportive of her big sister and enjoyed being an entertaining part of the day for all of us.  After speaking with them for a few minutes, I felt so proud that they were sharing their lives so that the rest of us would better understand the importance of MDA’s work.  To be so young, they seemed to really feel a part of the mission.  I asked if I could get a photo with them before I went to my table.  They gladly agreed, and one of the MDA Nashville team members took my camera and made the picture. 

Five years later, that photo is on my desk at work as a year-round reminder of one of the highlights of my summer and of two of the greatest inspirations for why I and many others go “behind bars” to raise funds to put an end to neuromuscular disease.  I have included it in letters and e-mails that I send during my fundraising period each year since, as I have with some other photos from Lock-Ups past.  As much as I treasure each memento from my times “behind bars,” that picture is still my favorite.  In the picture, little Emily smiles like a movie star while holding Sara’s hand to remind the world that she will take care of her big sister and do everything she can to fight for a cure.  Sara smiles with the pride of being the one MDA patient chosen to visit the Lock-Up as a local Goodwill Ambassador and with confidence that what we did in that room that day was to support her and other kids like her.  I’ve seen Sara and heard from her family in the years since that day, but that first meeting will always be one of my most vivid memories and greatest inspirations as a jailbird. 

It is appropriate that the Muscular Dystrophy Association uses a Lock-Up format for one of their fundraisers.  Muscle disease is a prison that people don’t deserve and a sentence that must end.  Let us who have any ability at all do what we can to help break those prison bars for them.  As I post this, I have one week remaining until the 2015 MDA Lock-Up.  I don’t know if I will see Sara and Emily there this year, but I will still be there on their behalf as I always am.  Please join me by contributing what you can right now to the important work that helps Sara stay healthy, will help her live independently as she gets older, and allows her family to learn and do more to help her.  Your gift is tax-deductible, and my bail-raising website is a secure avenue through which to give.  You can also contact me directly to make other arrangements.  Will you help blast the prison open now?  You know the fight.  Now, be one of the fighters!

http://www2.mda.org/site/TR/Lock-Up/LockUp2015-National?px=2212926&pg=personal&fr_id=19900  

Heading to the Slammer - For All the Right Reasons

                The Muscular Dystrophy Association does a great job of keeping us jailbirds motivated during the weeks building up to our annual Lock-Up event.  Some years, they distribute personal letters from folks living with muscular dystrophy or from the parents of children who live with some form of muscle disease.  It’s great to hear from the individuals being helped by your donations and, with each letter, I feel more knowledgeable about the vital work being done by an organization I have come to respect and cherish.  Here, I want to share a bit from some of those letters.

                In my first Lock-Up post of this year, I mentioned my new friend Nancy who called me before the 2014 Lock-Up and introduced me to her service dog, Wilson, at the event itself.  From her pre-Lock-Up letter:

 

                                "I have had Muscular Dystrophy since I was an infant.  Growing up with MD, the highlight of my youth was attending summer camp.  As a child attending a camp where everything centered around being able to participate in all activities it was very special.  I remember wheelchair baseball, basketball, swim, fish and even riding in a hot air balloon!  If I could still attend summer camp as an adult I would be right there.

                                MDA also has a clinic at Vanderbilt where I see doctors and a vocational rehab counselor.  They help me come up with new ways to do my daily activities, get necessary equipment and helped me fill out paperwork to get my service dog, Wilson.  Fortunately MDA has funds for batteries and tires for my wheelchair."

                From Julie Rutter here in Nashville, whose precious daughter, Emily (her smile makes you think of a Shirley Temple film), has a form of MD, I received a heart-stirring, thought-provoking account of a family walking into a whole new world:

                                "Spinal Muscular Atrophy (SMA) is a progressive neuromuscular disease currently with no treatment or cure. Emily has never crawled, never stood up and never walked.  But cognitively she is ahead of most milestones and, as she grows older, is increasingly aware of the way her physical abilities are different from those of her brothers and her friends…."

                                "The Muscular Dystrophy Association has helped us navigate our new reality.  They provide clinics with access to top-notch medical professionals.  MDA also offers support groups and an equipment exchange to help with the vast array of specialized equipment that is often not covered by insurance."

                I had not heard of a pair of patients of neuromuscular disease within the same family until I received my letter from Bridget Sarver of Mount Juliet:

                                "Both my husband and son are part of a clinical study for their condition Charcot Marie Tooth which the MDA is helping to fund the research on as well as paying for their visits to the MDA Clinic.  Most importantly in my eyes is my son Thomas’s trips to MDA Summer Camp annually, at no cost to my family.  Summer camp gives my son time to meet with other children and teens who are going through the same things he is facing.  He has been to three different camps in three different states and he has met a lot of individuals who are battling with multiple forms of Muscular Dystrophy as well as doctors and volunteers in a controlled and relaxed environment."

                These families, and so many more like them, are reason enough for me to “go behind bars” every summer. Heck, for these folks, they could put me in a real jail for a while if it would end the bondage of muscle disease. They are also reason enough for YOU to open your checkbook a little, and your heart a lot, to support the amazing efforts of the Muscular Dystrophy Association. Every dollar helps and is well-spent. Give what you can now so that, one day, the letters will say “We won!” Join the charge to victory TODAY!

http://www2.mda.org/site/TR/Lock-Up/LockUp2015-National?px=2212926&pg=personal&fr_id=19900