I like to write each year about the day we got Owen’s diagnosis, February 4th 2011, a day I’ll never forget. Usually when I write about that day, I write a letter to my past self, the frightened mommy of a 7-month-old baby boy. I tell that frightened mommy all about the things I wish she had known on that day. This year, I decided to write a different letter, a letter to Owen. I wish that scared mommy had known how awesome her little baby would turn out to be.
Ever since you were a little baby, I would squeeze you close and whisper in your ear, “I love you so much!” Now, often, when I say, “I love you.” You look at me and respond with a huge smile, “SO MUCH!” It’s our thing, just you and me. Sometimes you’ll look up at me and simply say, “So much.” And I know just what you mean. I love those words… so much.
Why am I telling you this? I guess because the day we got your diagnosis and heard the term 18q- for the first time, I worried that our lives, your life, would be less somehow. I was so wrong. Our lives with you are so much more than I imagined, so much fun, so much love, so much adventure, so much dancing, so much music, so much creativity, so much joy. You my boy, will never be less, you just aren’t capable of that.
Being your parents has made us be creative. You love to make up new games. One of your current favorites is “the alphabet food game.” Starting with A and working our way through Z, we name foods for every letter of the alphabet, X is the hardest letter. I’ll never forget the day we were out to eat. Daddy got stuck on a letter and couldn’t think of any other foods. Suddenly the older gentleman across from us shouted out a food. I’d noticed him watching us earlier and I thought he was annoyed by our game, but I was wrong. Then a table a few rows back, a family with children of their own, joined in and started naming foods. It was so much fun. I can’t help but think that everyone’s day was better thanks to you.
You love music and dancing, I hope you never feel too embarrassed to dance. Watching you and Benny at your dance recitals is magic. The spot light loves you but not as much as you love it. At your last recital I laughed until I cried watching Daddy and Miss Cindy try to wrangle you and Benny off the stage when your time was up. The audience adored you.
This past year you made a new friend, Super Mario. Aside from Daddy and me, he is your very best friend and he goes everywhere with us. Mario is brave and a true friend, just like you. One of my favorite memories of the past year is our trip to the Go Kart track. We all wore our funny glasses, inspired by Mario characters and raced around the track. It was awesome, and we looked fabulous. Thanks to you I am less worried about looking silly. The world is so much more fun now.
Hearing you talk is one of the most amazing gifts I have ever received but you also have the ability to say so much without uttering a word. One day a few weeks ago I had been gone all day. When you heard the door open you came running from your bedroom and grabbed my hands. As you walked backward, leading me to your room and pulling me into the game you and Daddy had been playing, you smiled up at me. You didn’t say a single word, but I felt so loved.
The day we got your diagnosis, I thought it would define you. I thought all our hopes and dreams for you were gone and we had to create new ones. I was wrong. You are special, but it isn’t in spite of OR because of that little piece of the 18th chromosome you are missing. It’s simply because you are you. You are who you always have been, the same person before and after February 4th 2011, and that person is amazing.
I am so proud of you. You are kind, joyful and full of love. You, my sweet boy, are everything a mommy could want a son to be.
I love you….