Flock of Swanns

Today sweet Emily Evans was laid to rest.   She entered eternal life on April 16, 2012… exactly eight and a half years after she entered this life on October 16, 2003. 

I had the privilege of attending the celebration of her life… to sit amongst the sea of people dressed in pinks and purples… and witness the many joyful recollections of her huge, beautiful smile, her contagious belly laugh, her dancing green eyes, her perfect curls, her boo-boo lip and her signature “leg shake.”   We listened to her grandfather, Bumpa’s, stories of her poker chips and her head rubs and could easily feel the depth of love that surrounded Emily in her immediate and extended family.   Amongst the tears, there was laughter in the memories of funny things she did, how much joy she had for life and how much joy she brought to those around her.  It was a lovely service… and certainly celebrated and honored Emily’s short, yet impactful life here on earth.

I couldn’t stay for the Internment or reception that followed, as John had to get back to work, but I have seen photos and read words from those who were there.  Photos from the balloon releases from all over North America brought me to tears, as did these words from Catherine, who was able to stay, “I learnt many things today… that one of the highest honors in Judaism is to help with the burial.  And, so, we threw earth upon little Emily’s coffin, the honor being that it is a gift she can never repay.”  These words are such an eloquent description of a beautiful gesture.  And, of course, so deeply heart wrenching when you think that it’s the coffin of a child… of sweet Emily. 

As the service began, the Rabbi read Sara’s (Emily’s mother) words… I will paraphrase, “Please don’t tell us, ‘Emily is in a better place.  These words are not comforting.’”   Though it might give others peace in their hearts to think of Emily as being in a better place, to her family who has lost her, Emily’s place is supposed to be with them… and therefore those words are anything but comforting.    Over the last few weeks, this incredible family had to make decisions that no family should have to make… devastating decisions that are evidence of the utmost love and compassion for their daughter.  Today, this amazingly strong-knit, loving family had to do the unthinkable - -  they laid their sweet daughter and sister to rest and kissed her goodbye for the last time.  And, as they did so, I watched them give comfort to others… they so lovingly offered support to those who were there to support them.  What they had to do today is so against the rules… parents and grandparents shouldn’t survive their children or grandchildren.   My heart is heavy for the Evans family.

After the family’s words were read, the Rabbi invited anyone else to come up and speak… not words of sorrow and sympathy, but to share stories of Emily and her impact on them.  I wanted to get up and say something, but in times like these, my words don’t come easily.  As I hugged Sara at the end of the service, again, my words failed to come… and instead, what came out was a jumbled mess of scattered thoughts… it was too overwhelming to look into her eyes with her sweet Emily lying peacefully behind her, her curls perfect, surrounded by Hello Kitty and pink, and gather my thoughts.

What I want to share with Sara is this…

Sara and Emily have brought together people from all over the country… all over the world, actually... and that is pretty amazing.

My connection with Sara started (she probably doesn’t even remember!) when she posted on my blog in September 2008.  I remember reading it when my mom, kids and I were in SoCal house hunting.  Her words were so kind and welcoming and I distinctly remember clicking onto her blog and immediately falling in love with Emily, aka, “Peanut.”  The pictures on the blog of Emily melted my heart - - I was immediately entranced by that gorgeous smile and those dancing eyes.  I admired Sara because I could easily tell, through her writing, that she was a strong mama and an advocate for her daughter.  She loved hard and deep and that was obvious when I read the stories about her “Peanut” and “Monkey.”

We would connect through our blogs for many months, all attempts to meet in person failed due to Gracie and Emily’s health or my inability to make Moms’ Group dates due to John’s crazy work schedule.  But we remained connected, through our blogs, and later Facebook.   And, each of us found additional connections through the other’s blog.  For those not in the special needs world, this may sound a bit strange, but for us, when we are constantly seeking new information, support and understanding, the world of technology is so important.  Sara is someone who manages to stay connected to others and bring others together, even when going through so much with Emily.    When Gracie was incredibly ill in the summer and fall of 2010, Sara, still never having met us in person, came to visit and brought cupcakes.  She loved on Gracie as though she’d always known her.   We missed Emily’s birthday party that year because Gracie was sick, but I will never forget the images of Emily enjoying herself in the bounce house.  Less than a year later, I was dropping off a care package for Emily and Sara at CHOC.    

Then, in October of last year, for Emily’s eighth birthday, we were finally able to connect our girls up at Emily’s party.  That day was a gift on so many levels… and is a fine example of the way that Sara and Emily have, because of their love and spirits (and via the beauty of technology), been able to connect so many people from all over.  Everywhere I turned, I was being introduced to another family that I only knew through the internet… through blogs.  People whose stories had touched me… words of advice, and support from those “in the know” of this world of special needs and medical fragility… all connected at one, very special eight year-old’s Hello Kitty party.    

That day will forever be burned on my heart.  It was a beautiful gift that Emily was out of the hospital and could spend the day as Sara and Alex hoped… outside, with friends, enjoying the gorgeous October weather, with Hello Kitty everything surrounding all of us.  It was the first time Gracie and Emily met and it was the first time Gracie had been at a party where she wasn’t the only one in a wheelchair.  That day was a gift for Gracie, too.  She wheeled herself all around, checking out all of her new friends and their families.  She truly loved seeing others who were like her.  It was a gift for me, as her mother, to see her eyes light up as she made her “great escape” time and time again throughout the day… wheeling around, going where she wanted, “introducing” herself in her own way.  That day, Emily and Sara gave Gracie a huge gift and, for that, I will forever be grateful.

Over the last several weeks, I have watched Facebook and blogger be inundated with images of Hello Kitty… the love, support and admiration of Emily and Sara (and Alex and Jacob) are why people did that.  They have touched so many lives and joined together so many who would, otherwise, never have been connected.  That is an amazing, never-ending gift.

I will never look at Hello Kitty and not think of Emily and the Evans family.  Rest in peace, sweet Emily… you were an angel among us and it was a privilege to know you, even if only for a brief time.

Please keep the Evans family in your thoughts and prayers.