You roll out of bed with little enthusiasm about the day ahead. It is 7:15 am.
You walk up from the basement, banging on the wall.
If you could speak, I would hear you say, ‘I want to stay in bed’ (BANG), ‘Don’t talk to me’ (BANG).
Your dad and I wait for you at the top of the stairs. We are grinning and saying our good mornings.
You walk into the living room and drop your body into the sofa.
Your righthand finger points to the right side of you and your lefthand finger points to the left side of you; your way of requesting that we each sit next to you.
We say ‘of course, we would love to sit with you, thanks for asking.’
Moments later you push me away, point to your iPad while looking directly at me, asking me to get it for you.
Sometimes I make you get it, but this morning I get it for you.
Your dad can usually stay with you. He is still your favorite.
I bring your iPad for you, you pass it back to me to enter the passcode, then you settle in to watch one of your favorite YouTube channels.
Your dad and I enjoy a cup of coffee together. Then we have another.
Despite occasional hollers and laughter at what you are watching, you remain calm and focused on your screen.
Your dad and I discuss our schedules, meeting times, school bus timing, and your sister’s activities.
You are 15 years old now and we enjoy these hours that we have with you.
A restful night and a morning coffee together, your dad and I are thrilled. You are communicating your needs with clear pointing, sounds and gestures. You independently walk up the stairs from your bedroom. You are wanting us near; you can tolerate our conversation. You are patient as I enter your passcode, you are laughing at your show without getting over stimulated and throwing your device.
We do not forget that things were not like this before. You rarely slept more than a few hours at night, we were never rested. Your body was never calm, you were never still, things were always being broken. We had to speak quietly to avoid agitating you. We never knew what you wanted because you could not tell us. You would pinch and hit out of frustration for not being understood.
Fifteen years have passed and look at where we are now.
A teenager, who would rather stay in bed, asking his mom to do what he could do himself, watching YouTube, ignoring our cheerful good mornings!
You have grown. You are learning to live in a world that is not always designed for you. It is noisy and hurried. It offers little explanation for those that need extra reason. It is hard when you cannot speak and there are so many people you want to meet!
You are navigating this in your own way.
The teenager you have become, alongside your early diagnosis of Angelman syndrome is something of which we are extremely proud. We did not anticipate reaching this point, and it is uncertain how long we will remain here. We still struggle with unexpected events, large crowds, and some community activities but we are working on them too. We will get there. I tell you though, these mornings are glorious.
We are proud of you and all that you are today and every day, our son. You give us hope, you show us strength, and we will fully enjoy these beautiful hours with you.
February 15th is International Angelman Day, a day to raise awareness about Angelman syndrome and celebrate and honor those living with Angelman syndrome. To learn more visit angelmancanada.org or angelman.org
