Yesterday, I discovered that I have been chosen by Make A Wish as one of their “Women Inspiring Strength & Hope” award winners for 2013. Now, I’m going to be honest – it’s ALWAYS nice to be recognized for bringing joy or bolstering kindness…but this is different.
Some of you know, from reading my first book, “Asperkids: An Insider’s Guide to Loving, Understanding & Teaching Children with Asperger Syndrome,” that my “take this poo, add some sunshine, and use it to grow something beautiful” attitude was honed before our family’s Asperkids journey began…it started in children’s hospital rooms and OR’s and being dismissed, even then, as “just an over-worried mother.” Yet it turned out that my “Aspie mind” was what doctors say saved her life.
Perhaps, in this old snippet from January 2010, you’ll recognize some rather relatable experiences….ones it had taken me years to share….
‘You saved her life.” That’s what the doctors told us days ago after they cut her spinal cord– “By sticking with it, and really digging — being her best advocates, you have saved her life.”
Over time we have gone from doctor to doctor around the nation, questioning diagnoses and searching for answers…shadowboxing many times, frustrated most of the time. Beyond fighting illness and sadness, we have, in our weary days, battled fear, doubt and fatigue…and much worse.
Few people know that this summer, someone who was not brave enough to come to us, but bold and arrogant enough to think they knew better, sent the Department of Social Services to our home in a surprise visit to interview the kids and question our medical care of our children…in a moment, our little ones could have been taken from us, and Maura — with enough to handle already — then had nightmares of losing Mommy & Daddy to compound her worries. “Doctor shopping until they hear what they like” they accused us, “Inadequate medical care.” This happened one month before my father finally passed from a terrible battle with cancer.
Though the social worker called it “ridiculous” within five minutes of meeting our little ones, I cannot think of a greater contradiction and validation than that we have just received — the top doctors in the WORLD for this condition have told us in no uncertain terms that our diligence, our “doctor shopping,” our faith and our thoughtful, questioning care have literally saved our baby girl…any less or any difference in what we did, and she would probably have died.
So today our little girl leaves the hospital with great hope for the future. Her life may still not look like other kids’, or like we would’ve designed…but there are better plans, and her very life will glorify the love that has kept her here.”
You see…before we knew she was an Asperkid, my daughter, now 10, was a Make-A-Wish kid (she even asked friends to make donations in lieu of birthday gifts this year – here’s Miss Nicole, Wish Granter, receiving Maura’s birthday party contribution.)
In truth, Asperkids would not be without the walk that came first.
Back then, I kept an online journal. And, in November 2009, this is what I wrote upon returning from our “wish trip” where Maura became an “official Disney princess.” I hope you’ll see, in reading it, that I really do mean it when I say that being brave means being scared but doing it anyway…and that when you can look above the day-to-day fray we all encounter…there really is magic everywhere.
“November 29, 2009
Maura arrived to a gift from Mommy and Daddy — her own glass slipper, pink rosebud, and silver charm bracelet with a crystal “wishing” star to remind her that she was our wish come true. But the most treasured of all were the “diamond” tiara and framed, guilded official Disney proclamation (as signed by Cinderella herself) that heretofore, Princess Maura was an official princess of Disney World — may she wear her crown in wonder and love.
By the next morning, she was riding the village carousel (privately) with the most beautiful Mary Poppins ever — I would not have been the least surprised if they had galloped off just as in the movie. Once we got to each park, every single Disney “cast member” saw her Make-A-Wish button and greeted “her highness” with a curtsey and a “Hello, Princess!” She (and Prince Sean) were escorted to the front of every character meet-and-greet from Daisy Duck to Minnie Mouse…there was never a wait for us to meet anyone, see any show or to ride any ride.
And of course, there were the princesses. Her favorite, Ariel (because of the red hair….that’s MY girl!) recognized her immediately during their private time together in the grotto. Oh, and Belle….in her ONLY kingdom appearance in her golden glitter ball gown, with Cogsworth (the clock), and the Prince (formerly the Beast) created an intimate tableau after their stage show. When Maura alone was allowed to go back to see them, she ran down a hallway and turned — it was like seeing a groom as his bride first comes into view. She stopped short and had to catch her breath. There was even a tear in Daddy’s eye….magic. Golden princess magic. They spoke in whispers about books and being curious, brunette and “different,” and it was as if they were all living a dream that no one dared to disturb.
These moments became everyday miracles….each better than the last. She and I attended the most gorgeous “Perfectly Princess Tea Party” hosted by Princess Aurora (Sleeping Beauty) and her friend, Rose Petal. During one heart-shaped sandwich interlude, Rose Petal (a beautiful girl who’d been changed from her flower days by fairies impressed with her generosity) began singing Disney songs for us all as we visited…and then, at the next melody, my heart stopped.
“Baby Mine, don’t you cry/Baby Mine, dry your eyes/Rest your head close to my heart, never to part/Baby of Mine….” came the soft words. Maura looked at me in awe, tiara atop her petite head and pink frosting on her nose — this mother’s song from Dumbo is exactly the little-known lullaby that I have sung to her in every hospital bed…it is our “from your head down to your toes/you’re not much, goodness knows/but you’re so precious to me/sweet as can be, Baby of Mine” promise to one another….that I would never leave her, that she would always — no matter what — be that baby of mine. God moments.
Shamu nuzzled her, Princess Tiana (the newest princess from “Princess and the Frog”) adored their matching frocks, Tinkerbell and her fairy friends, Rosetta and Silvermist, were astounded and giddy at Maura’s in-depth knowledge of all things Pixie-Hollow (and we’re talking specifics here, folks), and we even saw a couple get engaged as the Christmas lights were lit on Cinderella’s castle. There was not enough time for the magic to fit in one wish….
Also, we have received diagnoses this month of Asperger’s Syndrome on both Maura and Sean — so it’s back to a very real reality. This holiday season, please consider making a donation (of ANY amount) to Give Kids the World Village and/or Make-A-Wish of Central NC. Outside the gates of the Magic Kingdom, life continues on for many, and the children….all of the children….deserve a breath of normalcy.
Yes, it’s back to appointment and therapists, tests and consultations again….but, forgive me if I cannot help sounding ”Camelot-esque” when I say that for one, brief, shining moment, the world of Princess Maura was, as she puts it, “just cookies”….with glitter on top.”
So, thank you , Make A Wish – and thank you, Asperkids family. I couldn’t be more humbled or more grateful… (donations to MAW are gratefully accepted – ANY amount matters.)