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A Simple Request Today: Help One Family Remember Maura

Last week, I received this letter from a reader named Clare:

Dear Kelle,

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!”

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…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!

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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. 

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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.

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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.

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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,
Clare


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.

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  1. And I’m sobbing already this morning. Happy Birthday, Maura! I’ll be checking #honoringmaura all day :)

  2. Tears. Such love and so beautifully written. I will honor Maura today.

  3. So beautiful, and a wonderful idea to honour Maura x

  4. I loved hearing about Maura,she sounded a very special person who had a very special family x

  5. Beautiful.

  6. amazing post!such a lovely relationship…you were so lucky to have her, and she was so lucky to have you…greedings from Greece.I will honor her here…at the other side of the World…

  7. Perfect story to start the day with. Love for Maura will be felt everywhere today!

  8. OK, so now my makeup is a mess right before school.

    Thank you for sharing this. Will do something to honor Maura’s life.

  9. Such a wonderful story. Will honor Maura in some way today and shall share the story.

  10. Such a wonderful story. Will honor Maura in some way today and shall share the story.

  11. Thank you, Kelle. Thank you.

  12. Thanks for sharing…the tears have flowed…and now to honor her memory!

  13. I have a lump in my throat. What a beautiful family. Thanks for sharing the story.

  14. How beautiful. And thank you Clare and Kelle for the chance to share in this.

    I’m so not media-savvy, does anyone know if the tag will work if you don’t have a twitter account? Perpahs I’ll try linking it to Kelle’s Facebook Page?

  15. What a beautiful family ~ ~

    xo

  16. very very special, today we all #honormaura

  17. This is so so hard for me to read. So hard. I am the big sister to a beautiful 26 year old with Down Syndrome.
    More and more the though that we may lose her before we are ready has terrified me. It sits on the edge of my brain and looms over me filling me with fear and emptiness.
    I don’t want to face it. Don’t want to imagine pictures without my sister in them. I know that the fear is stealing the joy of today but I am struggling not to let it.
    I am not sure I am ready to face it but seeing another family and the way they have been able to continue to spread the amazing impact that their sister had on the world is wonderful!
    In honor of Maura I will be taking my sister out to lunch and not letting the fear steal my joy!
    Much love and comfort to Clare and her family on this bittersweet day.

  18. What a beautiful girl! I’m a pediatric nurse and many of the patients I take care of have Down Syndrome… I believe that the extra chromosome is a love chromosome because they are truly loving, beautiful people! I paid it forward in honor of Maura :)
    Stacie

  19. I will #honormaura today too. I am going to try to link this article to my facebook page. Clare, thank you for sharing your story and sending Kelle this letter after so many attempts. You have a beautiful family with cherished memories! I am all about making memories with my kids and family. Sending big hugs from Texas.

  20. i tend to share a special place for anyone who happens to share the name “Maura” and it seems like she was the best Maura of them all. this post is such a beautiful testament to her life and the love she shared. will be #honoringMaura for her and her family!

    – a far less extraordinary Maura

  21. I was a niece of a beautiful almond eyed girl. My Aunt was 14 years older than I, and had an infectious smile. She lived to be 62. She died in May of 2004. I still miss her and, her love for the Beattles. Thank you for sharing your story of your girl. Blessings.

  22. I was a niece of a beautiful almond eyed girl. My Aunt was 14 years older than I, and had an infectious smile. She lived to be 62. She died in May of 2004. I still miss her and, her love for the Beattles. Thank you for sharing your story of your girl. Blessings.

  23. I am going to find something to do one my way home from Philadelphia today. Thank you so much for sharing this beautiful life with us, Clare.

    Thank you so much.

  24. Thank you for sharing Maura with us.

  25. Sharing, what a touching story…absolutely beautiful.

  26. Clare….
    “My almond-eyed sister, Maura, died a year ago this month. It was sudden and heart-breaking. She was surrounded with love…”. Please accept my most heartfelt condolences.
    What a beautiful testament of not only an incredibly precious life, but also the love of a sister!! I can relate. See. I have an almond-eyed brother!! He is my best friend!! We share nearly everything with each other, both verbally, emotionally and physically!! {Including crocs!!} We possess an incredible connection, as I, too, have “special needs”. {Also. We share different life-threatening medical problems which required operations!!} I for one am grateful–yes grateful–for my youngest brother’s extra chromosome!! Down syndrome does not define who he is. But it has given him a tender heart of gold, plus an affectionate smile!! 😉
    –Hugs!!–
    –Raelyn

  27. This story has moved me, as many of Kelles’ have. I will absolutely be #HonoringMaura when I can today. I too have a younger sister with Downs. She has made me who I am today, truly, and I cannot imagine life without her. Living across the country has presented many challenges in communication and I miss her every single day.

    Clare – I am sending you and your family so much love. Keep this in mind: “Those we love don’t go away, They walk beside us every day, Unseen, unheard but always near, Still loved, still missed and very dear.”

    Maura might not be there to give a big hug anymore but she is laughing, crying, smiling with you every day. I am sure you feel that and I hope it gives you some peace.

    xo Jess

  28. I loVe that you joined in Kelle!!! What a wonderful project.

  29. Oh, she was such a beautiful girl — I’m so sorry for that family’s loss. But what a blessing she was to them! Her photos are beautiful. It warms my heart to know that she was surrounded by so many wonderful siblings! Each of my children has nine siblings, too :)

  30. I LOVE THIS STORY. Especially about how Maura was the glue that kept the family together and made them special. I’m going to think of an act of kindness I can do in honour of Maura.

  31. Happy birthday and God Bless Maura.

  32. <3

  33. Beautiful.

  34. OMG I am a sobbing mess!! Such beautiful words! and I can’t see to type anymore. Thanks for sharing xxx

  35. What an awesome and amazing story and family. Thanks for sharing and for #honoringmaura.

  36. I am a high school French teacher. I work in a high achieving, academically competitive school district. In our life skills class, which includes many students with Down syndrome, we have some amazing things happening right now. During our annual variety show, those students, with the help of some other students joined together and sang “Sweet Caroline.” They belted out their song and everyone in our school was on their feet applauding, with tears running down their cheeks. The kids in that classroom are now celebrities in our very large high school and they get shout outs and high fives from fans all day long. Thanks to #honoringmaura I am going to approach the life skills teacher and ask her if my upper level French class could visit their classroom once a week and teach them some French.

    Thanks for the inspiration. This is going to be AWESOME!

  37. Such a special story. Thank you so much for sharing. Thinking of and sending prayers to Maura’s family!

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  39. I read this post first thing this morning and copied her photo and printed it out on paper with a brief story about her and what her family asked. I taped money to each of the signs asking the person who found it to use the money for a drink or snack or whatever and to help remember Maura. I posted it on several drink machines on campus (I work at a big university). Something amazing happened. Later, when I passed by and looked at the machines, most the signs were gone and the money used – as it was intended. But on one machine, I found my sign, my money, and lots of other money taped to the sign!! Oh my heart just danced. I took pictures and posted it and the story on Facebook and hashtagged it and on twitter! Hope her family sees this! – Karen

  40. What a beautiful story of acceptance. I put the hash tag on my FB pictures since I don’t have instagram. My way of honoring Maura is by trying to help the good people of Russia see the value in children that have Down syndrome. I was in the process of trying to adopt a beautiful little 8 year old girl with DS from Russia when the adoption ban took place. I had spent 3 wonderful days with her in July of 2012. I just got back this week from Moscow where I did interviews trying to find a family in Russia that might feel capable of adopting her. They do not have the resources yet that we have in the US. But there are wonderful people trying to change that. I went and visited Downside Up to help bring publicity to their wonderful organization. That is what my FB pictures are of. It is my hope and pray that all children with DS can be valued and have their potential recognized. It would be wonderful if everyone could go like their FB page so they know they are not alone. https://www.facebook.com/PrettyPrincessPreschool/posts/10202699696989801

  41. Posted our day on instagram….it has been one of the most rewarding days to date.

    Thank you, Kelle!!
    And many big blessings to Maura’s family!

  42. I just started a paying it foreward on FaceBook. I wish I would have read this first. I will think of Maura when I send my gifts. I can include a note referring to her.
    Love her smile…..love how she was and still is loved.
    God bless your family.

  43. I’ve come back and read your post on Maura and her family three times. It touches my heart to feel their love for their sister and how deeply she is missed.

    Blessings to you Kelle for telling us about them and their beautiful story!

    Diane

  44. Kelle – thankyou so much for sharing Maura (and her family) with us!

    Clare – I am sooooo sorry for your loss of the beautiful soul that was Maura…..

    I loved the pictures you shared. They all touched me in some way – but, the one that spoke most eloquently – was the one of Maura, wearing a green necklace – laughing, with her hand over her mouth!

    It’s easy to see that she is so full of life, love, joy, laughter, exuberance, and confidence, that she has to clamp her hand tightly over her mouth, to contain at least some of it – to keep herself from erupting! What a beautiful ‘eruption’ she must have been!

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