Scrolling back through pictures of Evan in his first year, my heart hurts a little. It hurts for a number of reasons. It hurts because I can see the features that indicated he had Williams Syndrome. The blue sparkly eyes, the wide and flat nasal bridge. The memory of his floppy limbs. At the time I had no idea. Evan was over a year before we received his diagnosis.
I’m sure some of you are thinking, “what does it matter now?” Truly, it doesn’t. And 92% of time, (I did extensive research to get that percentage) I do not look at the words Williams Syndrome and feel anything negative. In fact, most of the time I see it as a true gift. That my son has this rare condition that causes him to have extreme empathy and compassion. It causes him to smile all day long. It causes him to sing at the top of his long and care very little who hears it. I can drop him off at preschool and there is no crying. He toddles away from me happily and forgets I’m there.
It hurts because I see my father’s rosy cheeks and ear to ear grin in Evan’s chubby baby face.
It hurts because I can remember the difficult time I had post-partum and how I longed to see the beauty in motherhood.
It hurts because I know my little boy is growing up. I know he will enter the public school system soon. That our first meeting with the child study team in our school district is just days away.
It hurts as I recall the first time Evan was evaluated by the early intervention team. How my stomach lurched each time they asked Evan to complete a task and he would just look at them expectantly, hoping they would play with him but not completing the expected task. Not knowing that he was being tested.
Then the hurt turns to a knot in my stomach. A knot of joy intertwined with struggle, intertwined with pride, intertwined with wonder.
My, how far Evan has come. From this little floppy baby who could stare at a spinning wheel for a half hour straight. From this bouncing bean who loved to leap in his jumper exersaucer. From this eager boy who wanted to communicate with us so badly but could barely get out the word “more” for the longest time.
This past weekend, I woke up late (glorious glorious thing that was) at my in laws house to find everyone else up and playing in their living room. Evan saw me, stopped the game he was playing, smiled a huge smile, came over and sat in my lap. He gazed up at me and just very confidently said, “Mama.” First time ever. Not the first time he said “Mama,” but the first time he spontaneously did so, without anyone pointing at me or prompting him. I can remember months and months ago saying to a friend, “I just can’t wait until he greets me and says my name in excitement.” It happened!!
The following night from his crib he whispered, “Ahhh you,” “Fo-eb-a”which translates to “I love you, forever.”
All on his own.
My Christmas gift has already been unwrapped. And it’s a gift i can unwrap every day. So blessed.