Maggie Blue

blue sky

Though much of the country is freezing and still digging out of snow, in California, the
skies today are brilliant Maggie Blue. It’s a blue so deep and clear, there is
no crayon to match and one wonders if a camera would even capture the beautiful
hue. It has me remembering a tremendous young lady, who left this earth one
year ago today….. and even as the tears are starting, I can’t help smiling.

I never met Maggie in person. I knew her like I know most of the kids in our JA
family….. through the stories and words of wisdom from her mom Diane. I came to
know Maggie after the diagnosis of systemic juvenile arthritis was added to the
already lengthy list of medical hurdles she faced. Her mom popped up on one of
the JA family forums… and she remained there, a constant source of strength to
other parents dealing with Arthur, despite the very serious struggle her own
daughter faced. Maggie was the same age as my daughter, and I was literally
mindblown at how mature, how totally confident in her own spirit Maggie was. I
commiserated as Maggie tried and failed medication after medication, and became
sicker and sicker. I cheered when Maggie was strong enough to do the things she
loved – like attend a hockey game, play her guitar, or sing on a radio
broadcast for charity. Over the months and years, I felt as if Maggie were
truly a part of my family. I prayed for God to stop what was happening to
Maggie. I marveled at her mother’s strength and was humbled by her family’s
ability to stay together and function…. I wished for a miracle.

At the end of Maggie’s days, she handled the reality of her own demise with the
same courage and determination that she lived her life. Through that very dark
period, the light of Maggie’s essence was brighter than the sadness of losing
her. She was not angry for what had happened to her – though I was… and I found
her grace difficult to grasp. She found meaning in God’s plan for her…. And she
took great comfort that she was meant to be a teacher. She knew that she would
leave a message that would help others live a better life. And she willed parts
of her tissue to science in the hopes that the research it allowed would reveal
ways to prevent others from facing what she faced. To say Maggie was a gift
from heaven could not be more of an understatement.

Over the years, I have heard Maggie’s voice in my head – she is my own Jiminy
Cricket – my conscience for Living Well. She has told me repeatedly not to
sweat the small stuff. When I am overly busy with dust bunnies, and frantic
over piles of laundry, Maggie reminds me to stop and take a breathe. “Life is
short – and live like there’s no tomorrow” is not a cliché when it comes from
the mouth of a twelve year old during her last days of life. Maggie has blown
color into some grey days, and she pulls me back to Gratitude over and over. I
just went back to visit one of Maggie’s last interviews…. To hear it in her own
words. I am sharing it here as well, if you would like to see it.

So, today, with the skies so blue, the sun so bright and the spring flowers
blooming… I’m thinking of Maggie. I imagine how much she would enjoy today. And
because I can do absolutely nothing to lessen the unfathomable sting this day
brings to her wonderful family, and her remarkable mother Diane…. I just want
to share the Maggie Blue skies with you today. I am not good enough, or strong
enough to live as well as Maggie everyday….

But for today I can. I can try to live as Maggie asked people to live. Today I
can hug an extra person…. Forgive a little easier… laugh a little more…. Give
my kiddos a few more kisses….And take a moment to smile into the sunshine and
up to Heaven.

Thank You Maggie Blue.

And here’s the link to the whole series about maggie from the Quad City Times:

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2 Responses to Maggie Blue

  1. Pingback: Day 2 – Santa Cruz to Monterey | JIA Mom's Blog

  2. Emily was diagnosed in January of 2008. I think it was 2009 when I found that group. At the time, Emily was only diagnosed as “just JA”. She seemed pretty simple. The first post that I remember reading about Maggie was when Diane was saying that the doctors told her that if she couldn’t get off of the steroids, they would soon lose her. I think this was about a year before Maggie passed. I was floored; I had been researching JA for quite some time, but I hadn’t read anything about JA kids dying! After a while, I found Diane’s blog link. I went back and read every single post. I also marveled at the strength of Maggie and Diane as well, the support of the whole family. It struck me how much love they held inside. When Diane writes about Maggie, it is filled with love. I laughed with them, I cried with them, and prayed for them so hard, so often. I think I spent the whole day that Maggie passed away sobbing. My kids were confused.

    Their story means so much to me. When Diane said that Maggie wanted to leave her body for research, I wondered what they would do. I think that would be a tough situation for a daughter to let their mother do that, but to allow your child to do that… that had to be 500,000 times harder. I was so impressed and in awe that Diane & Brad tried to carry out her every last wish. How many people would have done that? What Maggie has done will help so many countless people- possibly Diane, as well. But that is just how she was. I see a little bit of her every day in my own little fighter. Emily reminds me of Maggie in many ways. Maggie will always be in my heart.

    This is a wonderful tribute post. Thank you.

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