Happy 16th Birthday!

Saturday will be Ben’s 16^th birthday. May is also National X and Y Chromosome Variation Awareness Month. In honor of these two things, let’s try to get SIXTEEN donations for Brandon’s Hundred Hole Hike, which benefits AXYS, an organization that raises awareness for individuals and families who have X and Y chromosome variations – families like us. Here are sixteen memories I have of Ben, some small, some big, but all make him who he is today.

1. You had to have a violin. You had us order it on Amazon and expedite delivery so it would arrive within a few days. When it got to our house, you played it for a few days, and decided that you’d rather have a ukulele. After a bout with the ukulele, you decided you’d be a brass man, and you wanted a trumpet. You stuck with the trumpet for a few years, even achieved a rating of “1” at a musical contest…and then gave it up when you found out marching would be involved in future years. I can still picture you in all black, that silver trumpet at your side as you strolled into LHS for your final concert. And now, at almost 16, you’ve finally let us hear your voice – a beautiful baritone sound that I hear on Sunday mornings and sometimes resonating throughout the house late at night when you think we can’t hear you.
2. After six years of playing forward in soccer, I remember the day you came home and announced that you needed some goalie gloves because you thought you’d like to try to be a keeper. It took you longer than most to learn some things, but this….this you just KNEW. It just came to you, like every ball you just keep stopping.
3. Another memory, and perhaps just a fleeting one for some, is the vision of you in our front yard in our Shawnee home. It was summer. It was hot. And at that time, I felt compelled to put you in overalls. Your baby rolls spilled out around them and you nearly tipped over in our yard from the weight of the denim and your low muscle tone – but you were mesmerized by the world around you – the color of the dandelions, the blades of grass. Oh how we loved you and still do.
4. Finding out for yourself why you are eXtraordinarY – to know that an extra “X” in your genetic makeup makes you feel and think the way you do – to see your face when you saw the karyotype image and it occured to you that you really are different for a reason and that it’s okay to feel the way you do. To see your face relax, your shoulders settle, and your eyes narrow as you pondered the last 12 years and the decisions that were made that led us all to this point. That moment was by far, quite memorable.
5. You loved the Wiggles, an Australian sing-songy band on the Disney Channel. You loved them so much that you dressed as Greg for Halloween and wore his yellow shirt and black pants to daycare for the whole week following. You wanted a Big Red Car so we bought you one. You went cruising through the sidewalks of Olathe singing “Fruit Salad” from the tops of your lungs and searching for Captain Feathersword. You even had a Wiggly Party for your birthday, and yes, we went to their concert when their tour came to Kansas City and we had our picture taken with Dorothy the Dinosaur. Somehow, these pictures long since disappeared.
   

   
6. When you were in Kindergarten, I used to work in your elementary school building and my office was just across the hall from his classroom. At that time, you had difficulty with sensory processing, routines, social skills, and a number of other things, but you didn’t yet have a plan in place or what today would be called “general education interventions”. That morning was different than our usual morning, because I was helping with hearing screenings and I was not in my office. You were having a rough morning and for some reason, your teacher had not seen you come in the classroom. She had also not seen you leave. When you went to go look for me and I was not there, you weren’t sure what to do. When the bell rang, you didn’t want to be late or be in trouble, so you hid under my desk. Two hours later, your class came into the room for hearing screenings. I watched for you as they filed in and I remember that feeling of panic when you didn’t arrive with your class. We quickly discovered that you were safe and sound in my office, under my desk…hiding away from the world, from the bell – because you, unlike most children, didn’t know you could just walk right back to your classroom when you didn’t find your mom in her office.
7. When you were little, you didn’t want to go into your daycare for a week because the ceiling tile was missing. There were little things like this that bothered you. There was a magazine rack at our pediatrician’s office that always seemed to taunt you. It was made of repurposed scrap metal and resembled a robot, but to you, I always imagined the clown from Stephen King’s “It”. I remember having to carry you to the other side of the waiting room and holding you until another family offered to move for us. I wonder if that magazine rack is still there.
8. There was a wonderful lady at your childcare center who would always call you “Bean.” I’m not sure if it was her dialect or if it was her pet name for you, but the name stuck. For your 5^th birthday, we ordered a birthday cake for you with a racecar theme from someone who had just started decorating cakes. When I picked up the lopsided cake that had nothing but a matchbox car on it and pudding in the middle, I knew I had to quickly run to Dillons to order another cake! When we picked up that cake, the order said “Happy Birthday, Bean” instead of “Happy Birthday, Ben”. We didn’t have the heart (or the time) to get it changed.  To this day, I still catch myself yelling from the side of the soccer fields “Go Bean!”
9. I remember the day that Molly came home after someone at school had called her “fat”. You stepped right in – the overprotective brother. You distracted her, stood up for her, built her up, and made her feel special. You showed an interest in what she likes and I believe you even played dolls or bunnies in order to make her feel worthy. I don’t think you’ll remember this moment, but I’m pretty sure Molly and I always will.
10. You’re the cat whisperer. You always have a cat on your back or on your lap. At 6 foot 2, you have a gentle way with animals. When Rocket and Star were kittens, you would cradle them in your arms, let them ride on your shoulders, and rock them to sleep. When our neighbor back in Kansas was being cruel to Nova, you stood, defensive and angry, on the front porch, until he backed down and Nova came running home.
11. On your first Christmas you sat in your blue and white striped velvet jammies, in front of the tree – a tiny baby, looking up at its entirety, watching in awe, taking in all of the lights and the brilliance….the beauty and the innocence – it was all yours.
12. You called airplanes “puh-tings” and you wouldn’t stop repeating that word until we pointed at them in the sky too and said “puh-ting” instead of airplane. You pointed at every “Nonalds” (McDonald’s) and became outraged when Dad and Papa forgot their money and you had to leave without your French fries.
13. I remember when your friends left you behind at Free State High School. You had gone to play soccer for a few hours and when I came to pick you up, the fields were empty and you sat on the curb alone. I knew that I hurt worse for you that day than you did and that you didn’t fully understand what had happened, but I wanted to make things right. I still do.
14. When you were 14, you had a group of friends over to the house. It was the first time we had a big group of guys over and everything seemed “normal”. You were playing basketball until sunset – being loud, leaving empty Coke cans in the driveway, playing music, and just being kids. I will never forget it.
15. And I remember those days that are few and far between….when I tell you it’s “Hug Your Mom Day” and you pretend to believe me. You give me the best hugs that seem to last forever and the world melts away. Our differences, our challenges, and our worries – none of it matters but this moment…and I remember that little boy I held in my arms 16 years ago.
16. Which brings me to my first Mother’s Day, May 13^th, 2001, the day that you were born. I had tried on my oversized cap and gown the morning before, gone for a walk, and then Brandon and I were on our way to my graduation barbecue at my parents’ house. The whole family was there. It turned out to be a “labor” party.  “Drops of Jupiter” by Train played on the radio on the way to Menorah Medical Center. I remember my friend Amy calling me so I could hear my name announced at graduation. Hours, MANY hours later, you were born…at 2:01 a.m. on Mother’s Day. I got the best graduation/Mother’s Day gift that anyone could ever ask for – YOU.  Happy 16^th Birthday, Benjamin Michael. I love you more than you will ever know.