Last week, I received this letter from a reader named Clare:
I’ve started this letter to you probably about 5 times over the last year. I’ve never quite been able to put in words all that I wanted to say, but last night I decided I needed to try again.
I read your book right after it came out while I sat on the beach with my husband and wept. I am the big sister to an almond-eyed little girl, and you gave me such a great insight into my parents’ struggles and worries. Your Nella and my Maura have the same infectious smile! You can’t help but laugh when they laugh! I stumbled on your blog several years ago and have since shared it with others I knew who needed it.
Your blog has been so very life giving to me, particularly over this past year. My almond-eyed sister, Maura, died a year ago this month. It was sudden and heart-breaking. She was surrounded with love…
I think my favorite story that my parents retell occurred in the first few days of Maura’s life. Maura was the sixth child (of eventually 9 babies). After Maura’s diagnosis was confirmed, my parents came home from the hospital, prepared to tell us the news. After telling us children that yes, Maura did have Down syndrome, we all fell to the floor, weeping, noses running, each a huddled mass on the floor with an adult bent over, cradling the distraught sibling, until one of us lifted our head and asked, “What is Down Syndrome?” And in the words of my mom, “There began the story, the healing, the acceptance!”
…I remember one summer Maura went to an overnight camp. To get from the mess hall to her bunk, she had to cross a bridge over a lake. Maura was petrified. She absolutely refused to cross the bridge. Hours went by, and still Maura had not crossed the bridge. My mom, jumping into action, hoisted Maura up on her hip and said, “Maura, you face your fears just like we do—head on!” And off they went over the dreaded bridge. Within a few feet of no fatal incident, Maura began to smile, then grin, then giggle. She then ultimately navigated multiple bridge crossings per day with a smile!
As we approach her “Feast Day” as my mom calls it, we have come up with a way to honor her memory and spread some of the same joy that she always showed us. We are organizing a “Pay It Forward” kind of day and trying to spread the message. I’m encouraging people to do random acts of kindness and leave a note explaining what you’re doing, then take a picture of the act and post it to social media with #HonoringMaura. It will be a tough day, but in between the tears we wanted to do something positive. We are asking our friends and family all over the world to participate and it would mean a great deal to my family and I if you would like to take part.
There are 9 children in my family and we loved Maura something fierce. I remember right after she died and looking at my mom and asking how we could go on. I felt like Maura was the glue, the thing that made us special and I feared we had lost that. Over this past year I have been blown away by how many connections we have made through Maura. Being in a large family I would often be called “Gerry’s daughter” or “Rachael’s sister” and I never liked that, but the other day I was referred to as “Maura’s sister” and I was beaming the rest of the day.
I’m attaching a picture of Maura so you can see that infectious smile! There’s also a picture of all my siblings. One of my sisters is holding a pink stuffed animal that belonged to Maura. We had some family pictures made last spring, and that was our way of having Maura in the pictures with us.
Thank you for your honest words about Down syndrome. You have had such a huge impact on my life.
Much love to you and your family,
We have the opportunity to help make today very special for one family just by sharing an act of kindness. Buy an extra cup of coffee for someone, scrape off the windshield next to you, bring lunch to your child’s teacher. And if you’re using social media, can you share it with the hashtag #honoringmaura? Maura’s family will be remembering and celebrating her life today through watching acts of kindness spread around the world. What a wonderful way to be remembered. And what a perfect way to start our Wednesday.