Bowling

4:30 a.m. Saturday the alarm rings, I groan and force myself out of the cocoon of blankets and wonder why I am doing this, and if the pounding headache I woke up with two hours ago will go away soon.  I move through the house adjusting the heat in each room and turning on the kettle before settling in the couch corner to watch the Weather Channel for a few moments.  After a quick shower I check on Hillary and her feeding pump then, with a mug of tea in hand, resettle on the couch still wondering what I am doing this for.  Not too long after, I begin the process of getting Hillary out of bed before the sun is up.  Indeed, we have to be on the road shortly after the sunrise; and it’s snowing.

Hillary is uncooperative and unhappy to be forced from the nest of her bed so early for the sixth day in a row.  As I coax her to eat her cereal and drink her milk she gives me looks that could kill but finally she’s finished. Bruce has warmed the van by driving to the bagel store to get our breakfast to go so we load our athlete into it and start out for the Special Olympics Area Bowling Tournament.  She sleeps the whole way there, Bruce and I talk softly while he drives and I look out the window praying my headache, which has mostly subsided to a manageable level, will not return at the bowling alley.

Once inside, Bruce takes Hillary to check in while I locate and grab a nearby table as parents are not allowed in the bowling area once the competition begins.  I try the tea in my travel mug and find that it is still boiling hot so I set it aside.  Bruce returns briefly to let me know which lane to watch and continues on with our princess.  He will stay with her until the volunteers are ready to take over.  I watch them and as he talks to her she looks up at him from her wheelchair, adoring and laughing at her daddy.  She is Daddy’s little girl, even at the age of 21.  I see the other competitors enter the building, some with parents, most with attendants from their group homes or recreation programs.  Adults with children’s faces, some I recognize from years past, some new to me, all excited to be at the event today.  I notice that the man, Paul, who three years ago introduced himself to me by shaking my hand, asking my name and telling me that his father died, is there again, but now using a wheelchair instead of his walker.  I wonder at his age.  Then I spot the woman who asked me last year, with the trust and face of a five year old under her gray hair, to help her with the souvenir zipper pull the participants were given.  She looks the same.  As I make small talk with the two women sharing our table, who each work at a different group home, Hillary’s coach approaches me.  She lets me know that since this is her senior year and so her last on their team, she has arranged for my daughter to be the American flag bearer for the opening ceremonies and that her teammate Alexandria will be pushing her wheelchair.  I am touched by this and hope that we can get a good picture to add to the many I have taken of father and daughter laughing under the Special Olympics banner.

Finally the competition begins and I can look over the pictures we have taken with our iPhones.  Some are good, and I post one of Bruce and Hillary laughing, the excitement apparent in her eyes, on Facebook. It will get many “likes” and a few comments if history is any indication.  As we munch our bagels, chat, and watch the games we marvel that Hillary still is laughing as she waits her turn and her lane mates talk to her.  This is a friendly competition.  I cannot watch her laugh enough; she rarely smiles and rarely laughs. She wins the bronze medal which means in a month or so we will once again be up before dawn and sitting in a bowling alley much earlier than we would like.  It’s ok, it will be worth it if it makes her happy.  Whatever it takes to see that smile is what we will do. Suddenly getting up at 4:30, braving the weather, and sitting in a bowling alley with a pounding headache is worth it.   

Recognition

While our high school robotics team was hosting a huge competition, and our girls lacrosse team was holding a fundraiser, three of our high school students traveled to Stratford, NJ for the state finals in Special Olympics Bowling.  I can assure you this was no easy feat for those three athletes, and meant as much to them as any other event meant to other students, and perhaps more.  You see, these three youths don’t get many chances to succeed, let alone excel.  The joy and pride they show when their name is called when results are announced is astounding.  As a parent, I watch with mixed emotions; a whole pot full of simmering emotional stew in fact.  While I am pleased that my daughter has come this far, I am displeased at how inconvenient the weekend has been.  I am glad that she has had this opportunity, but sad that she has so few opportunities to participate in activities in which she is not simply a spectator.  It will be nearly another year before she has the chance to participate again, and while I am somewhat relieved by not having my Saturday mornings planned in advance, I am upset for her knowing that there will long expanses of time unfilled with meaningful activity.  So it was, with all that running through my mind that we sat as a family at the most recent town council meeting. We waited through awards and acknowledgements for our police force; a citizen who had been instrumental in capturing a bank robber; and our girl’s high school track team’s winning seasons until it was Hillary’s turn.  Our mayor and town council were recognizing the achievements of Hillary and two of her classmates’ participation and success in the state level Special Olympics bowling competition.  As I wheeled Hillary up to the podium as her name was called I was able to see the faces of the others present.  What I remember is the look of astonishment and pleasure on some of those faces.  Hillary was the only one in a wheelchair, and if you have never been involved in the Special Olympics bowling, you may not know that there is a ramp bowling division.  It lasted only a few moments, but they are moments I won’t forget.  Once we were home and she was tucked into her bed, I had time to reflect upon the recognition bestowed upon my humble daughter.  I felt proud not just of her and of us for taking her to events, but of our town.  It is not perfect, but I am proud to say I live in a town where someone like Hillary is given a certificate of recognition by the mayor.  Any recognition of the difficulties she overcomes to participate and succeed are most welcomed, and restore in this mother’s heart the hope that somehow, Hillary is making a difference in our small corner of the world, and can truly feel that she is part of our town.

Poem & Reflection

FOR HILLARY



Some days

All that I can see

Is every DISability

The little things

You cannot do:

Pull my hair,

Untie my shoe,

Say my name,

Rock the chair,

Look up and say

“Sky is blue”,

Draw a picture

With big red trees,

Run up to me,

Hug my knees,

Pick a flower

And hold it up,

Spill your milk

Out of the cup,

Throw your lunch

Against the wall,

Or even roll

A purple ball.

But then I look upon your face,

Trusting me in every place,

And then it’s clear

Just how lovely and how dear

Having you to love can be

And for a heartbeat,

There’s…….ability.



I wrote this poem in the early 1990’s, most likely when Hillary was about 3 years old. She hasn’t changed much, she’s bigger, and we’re certain that she understands most of what’s said to her, but she has no way to really let us know. It’s ok, I’m used to it now, after all it’s been nearly 20 years. But every once in a while all I can see is what she is not able to do in relation to her peers. I don’t mean her peers who have no disability, but rather her peers who do have disabilities. Even among those peers, she is generally the most affected by an assortment of challenges. This is something I’ve been struggling with this week after spending last Sunday afternoon at a teen/adult Special Olympics bowling competition in which Hillary was competing.

This wasn’t my first time at this event; we were there last year as well. It’s one of the nice things about Hillary’s school program that they compete in the Special Olympics, and with a ball ramp and some assistance Hillary can participate as well. She used to participate in a league for children with disabilities until her bowling buddy and one of her first friends from infanthood, Francesca, passed away. We didn’t have the heart to find a new partner after that. Any how, when the opportunity presented itself we took advantage of it. Special Olympics is a happy time for the athletes and for the volunteers, they all seem to be enjoying themselves and the athletes are so proud of their accomplishments. Even as Hillary received a bronze medal, however, my stubborn heart refused to be lightened. My heart was hurting from the re-realization that among the minority that those with disabilities are, she is a minority. Most of the other participants can walk, and even of those who were also in wheelchairs, she was the only one who can’t talk, and to the casual observer seemed to be indifferent to those around her. I have to give the volunteers credit for at least trying to engage her, and the other participants tried to talk to her so it wasn’t that she was being ignored. Still my heart remained heavy.

One day I will be able to find the joy in this day. I will be able to see the happiness that escaped me then and eludes me now. First I must once again grieve the daughter as I dreamed her when she was born, and truly see the amazing one who is with me.