Tag: joy

A Letter from a Mom

A while back I received a letter from a reader.


Hello,

This is a strange thing to write in this comment box, but I have a daughter with Down syndrome, and she’s named after your daughter Joy, even though I’ve never met her or you. Let me explain.

My other daughter was in Joy’s class at Meadows when I was pregnant and we got the news that she would be born with Down syndrome.

It was an emotional time for me, and one day I noticed Joy (I didn’t know her name yet) in the pickup line and overheard the teacher say to your wife what a great day she’d had that day and has every day.

I was overcome with emotion hearing that; it was so overwhelming for me. And then later there was a picture of Joy and my daughter on the class app. I asked my daughter about her, and she told me her name was Joy, and I immediately started crying. I was not yet at the point where I felt joy, and I found it incredible that you guys named her Joy.

I resolved at that moment that my daughter’s middle name would be Joy and that I would manifest a feeling of Joy in my heart for my soon-to-be baby even though that’s not what I was feeling at that moment. I was so scared of the unknown.

Fast-forward to today, and our little L___ Joy (now 20 months) is the joy of everyone she meets and the little joy of our family!! It’s hard to think back to those early days after the diagnosis. I think about my fear and sadness with shame. But seeing your daughter Joy, without even meeting her, brought Joy to my heart and helped me through that time.

I ran into my daughter’s preschool teacher recently and through our conversation I ended up telling her the story and she shared your blog. I just spent the last hour reading it. It’s so lovely. I’m so moved by what I read that I thought I’d take a leap and send you this note. I loved reading the stories of Joy and I can’t wait for my little L___ Joy to experience all of the things I’m reading about.


Joy’s “Good Side”

Joy loves kindergarten. In the morning, as we get ready for the bus, making lunch and packing her backpack, Joy gets visibly excited. And during the week, we get many pictures from her teachers at school. Joy is clearly having a blast at school and learning so much. But she is super tired when she gets off the bus at 4:40. She often wants an afterschool snack and play time or a bike ride. And we do dinner early because by 7 pm, she is ready to go to bed.

Joy will come into the kitchen, where I’m often reading or working, turn off the kitchen and dining room lights, and then gesture to me (or Mom) with her hand. We don’t need words to understand her. She is ready.

I put down my book or close the laptop, make a cup of ice water, and follow Joy down the hall. Joy brushes her teeth (with some assistance) and we change into pajamas. She hops into bed, and I give her the water. She takes two or three sips and lies down, pulling the covers up to her chin. I dim the lights.

I lie down on Joy’s left, letting Joy rest her head on my right arm. She puts her right hand in mine, and she rolls her head back and forth until she’s comfortable. She turns to me and gets as close as possible, snuggling and putting her leg on my leg. She believes that this snuggle hold is rock solid, that there is no way I can escape. And of course I don’t want to escape. I live for this.

When she is held, Joy often falls asleep within minutes. And the smell of her hair can make me sleepy as well. I might nap for thirty minutes or so like this. Then, if I’m careful and gentle, I can extract myself from her embrace. If she starts to wake up and I’m not in the snuggle position, she will whine for a few seconds until I resume the snuggle hold. Soon, though, she is back in deep sleep.

So Joy almost always places her head on my right arm. But yesterday, she lay down in my spot. So I climbed over her and placed her head on my left arm. And I looked at her as she snuggled into me. And I noticed how really beautiful her eyelashes are. And those cheeks. And so I wondered if this change in perspective had something to do with me rediscovering Joy’s beautiful features.

It was odd. I mean, Joy’s face is symmetrical. Her eyelashes are mostly identical on each side. Cheeks too. Her smile is joyous and wonderful from every angle. Her hair is soft and shiny. (However, there is some research that demonstrates that the left side of the face shows more emotional expression. The left side is often considered our “good side.”)

So I’ve decided to look at her from different angles. Every day. I want to commit to memory as much as I can about what Joy is like at age five. And six. And seven. And since my memory is getting slippery, I want to take more photos and videos.

And someone needs to take pictures of her mom and me. Because someday, she might ask, “Who loved me the most in the world?”