Seriously Not Lame

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I ran into this tutu-adorned guy at a 10k expo today and liked him immediately. He oozes awesome. But if you asked SELF magazine, they would say he was lame.

The Huffington Post reported that the April issue of SELF ran a picture of Monika Allen in the “Lame” column of their “BS METER” with the following caption, “A racing tutu epidemic has struck NYC’s Central Park, and it’s all because people think these froufrou skirts make you run faster… Now, if you told us they made people run from you faster, maybe we would believe it.”  They had contacted Monika for permission, but neglected to mention their less-than-honorable purpose for running the picture. Monika assumed it was possibly to highlight her tutu-selling company, Glam Runner, that also helps raise money for a non-profit that focuses on empowering young girls.  Or maybe it was because the picture was taken during her first marathon since receiving a BRAIN CANCER diagnosis. Yup. Not only is Monika tough enough to run a Marathon, but she was doing it while undergoing treatment for CANCER.

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For Kaitlyn- Down Syndrome Awareness

In honor of World Down Syndrome Day (in March) and Down Syndrome Awareness Month (in October) I would like you to meet my friend Kaitlyn.

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Now that you have met her, I wish she could meet you. I mean that with all my heart, your life would be better for it. Just one of the countless reasons why it is so agonizing that she was taken from us too soon.

Kaitlyn passed away in December, 2013 after a brief battle with illness. Her loved ones were stunned with grief, and it sent a shockwave through the local special-needs community. It seemed inconceivable that her light was snuffed out; so young, so bright.

Today is the first World Down Syndrome Day that her family will be celebrating without Kaitlyn. It is a bittersweet observance. They mourn the loss of their sweet girl, but celebrate her life, her legacy, and the many lessons she taught all of us. We are richer for having met her, and poorer for having lost her.

Kaitlyn lived enthusiastically & loved unconditionally. Among her favorite things was the color pink, Disney movies, music, dancing, and her family. She showed those around her that true beauty lies in being, as her mother so eloquently put it, “Perfectly imperfect.”

Her memorial page on Facebook is filled with memories, pictures, and this adorable video. How can you watch such a sweet girl and see her as any less than perfect?

Kaitlyn’s brief time on this Earth urges us to redefine the world’s standards of value and perfection to embrace a life well lived-and well-loved. She was truly beautiful, and she is truly missed. So today, on World Down Syndrome Day, I thought you should meet her. Kaitlyn may no longer be with us, but her light continues to shine. 

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Update: Kaitlyn’s mother, Tracy, has this to say~

On World Down Syndrome Day, I remember……
15 years 4 months and 3 days ago, I gave birth to one of the greatest gifts of my life. November 18, 1998, weighing in at 7lbs 4 1/2 oz, & 18″ long. We found out at 6 months pregnant that our baby girl would have Down Syndrome. The words leaving the Dr’s mouth that evening, made me go deaf temporarily. We were scared, and the battle for faith commenced. For 3 more months we waited, we fought off the perinatologists best efforts to convince us she should not be here. Hydrocephalus they said, major heart defect they said, vegetable that would never leave the hospital they said, think about the quality of life they said, you’re young and can have another baby they said. Another baby??? But THIS was our baby…she had grown inside of me, I had felt her every move. I watched the screen as she’d move and bring her hands to her face. She was mine, right from the beginning, and as mothers aren’t we to protect our young? Isn’t that our purpose as mom’s? You would never dream of having a baby and the Dr saying, “by the way this ones defective we’re just going to end it’s life” The moment came, and it was clear…put our faith in God and he will take care of it. 

Kaitlyn Dee Laramore was born. Her first cry brought a rush of relief over my soul. There was no breathing assistance needed, no NICU needed, no extended hospital stay. She came home with us 2 days later. I can remember standing over her cradle in amazement at all the things she was, and none of the things that they told us she would be. She had heart surgery at 6 months and we never looked back. For 15 years and 8 days shy of 1 month, she BLESSED our everyday life. She was a ballerina that loved to dance, reading anything she could get her hands on, Katy Perry, Doc McStuffins, Mary Poppins, Disney World, and to be anywhere her family was. She wanted to be a princess when she grew up. Always a smile, a hug and a how was your day, especially when it had been a rough day for one of us. Always so considerate and kind, and full of love and a smile. The unconditional love we learned and received was the greatest lesson of my life. People that are faced with this “decision” after receiving a prenatal diagnosis of Downs…I BEG you, quiet your mind and open your heart. Trust, and have faith. It won’t always be easy, but it is without a doubt the greatest pleasure of my life to have been her mommy. The hardest part of having my daughter who just so happened to have Down Syndrome, was the day God said he needed her back. December 10, 2013. The world lost one of its brightest lights that day. Her race was run, and her purpose fulfilled. The greatest teacher of my life. Wouldn’t change a thing, except keeping her with me forever. 

One last question…..Would you turn down a piece of heaven if it was offered to you? They are as close as we can get to it in this unkind world we live in. The world NEEDS them. Let them teach us. We have so much to learn! Happy World Down Syndrome Day

Small Victory

(Flashback to Toddler days)

When you are parenting a toddler with special needs simple little things somehow have the ability to turn into ridiculous struggles. For example, the diaper change. Toddler could have a full diaper that is leaking and sagging and cold and visibly uncomfortable but HEAVEN FORBID I try to slow him down to change that nasty thing. I suddenly become WORSTMOMEVERRRR. I have been known to pin him down with my feet to keep him still (taking great care of course to ensure he remains uninjured). Gotta get the job done somehow, right? The whole scene gets even uglier when there is poop involved, but leaving him in a soiled diaper is not an option. I have to remove any possibility that he might be inspired to engage in creative finger painting, if you get my meaning.

Toddler was especially angry during a recent diaper change and kicked and screamed and squirmed and flailed the entire time. You would have thought from his behavior that I had just told him that he could NEVEREVERGOOUTISDETOPLAYAGAIN. EVER. That’s how upset he was. I got creative in my desperation, and had to drape the entire length of my legs across his body to help keep Hurricane Toddler contained. My thighs pinned his feet and my feet held down his arms. It was an epic battle, one for the history books, but I fought valiantly. Significant progress had been made for Team Mom when Toddler suddenly was able to wrench his arms free. His wrath poured out in all its glory as he furiously began to push the diaper off his body. I continued to fight against him, and finally yelled in exasperation, “I…WILL…WIN!!!”

My preschool-age child had been nearby the whole time, calmly watching the whole chaotic episode. When the diapering was finally complete Toddler was rolling around on the floor, tears streaming down his face, still howling his protests, still without pants. And I sat in silence, exhausted.

Gazing at a screaming Toddler who was by now foaming at the mouth, Preschooler soberly asked me, ”Did you win?”

“What do YOU think?”  I responded wearily.

After thinking for a moment, his response was simple, “I want juice!”

Seriously Not Boring is now on Facebook!

Seriously Not Boring now has a Facebook page! Please swing by and give us a like, and maybe even tell your friends? “But I’m not a special-needs parent,” you say. Well, that’s ok, it’s not all Autism all the time. It’s just a little page trying to find information, inspiration, and hopefully even some humor in the midst of the mundane and the maddening. A celebration of that which makes us unique. Come and share your stories of the Seriously Not Boring.

https://www.facebook.com/SeriouslyNotBoring

"THIS IS THE BEST THING OF MY LIFE!"

Why I Told the World My Son Has Autism


(An abridged version of an earlier post, “The Story Behind ‘Sea lion Shadow'”)

A short video featuring a gleeful little boy and a sea lion playing follow-the-leader somehow turned into a viral story that spread across the globe. That boy is my son, and I never dreamed that a visit to the zoo could be the catalyst for such a surprising chain of events and an unexpected opportunity, with my son’s permission, to share special-needs awareness.

One late winter morning my family of four took a day trip to Washington’s National Zoo. The Sea Lion exhibit was one of our first stops, and we found ourselves alone in the underground observation area. A young sea lion almost immediately appeared at the glass and stared straight at my 7-year-old son, seemingly attracted to the contrasting colors on his coat. The beautiful animal began to shadow his movements and Alex cried out, “He LIKES ME!” Little did we know at the time that the sea lion was actually a girl, named Sophie, and that Sophie regularly initiates games with her visitors. My son was simply happy that, for just a moment, Sophie was choosing to play with him. I began to record the encounter and she kept pace for several minutes, surfacing only for air. Alex, who has an Autism Spectrum Disorder, could barely contain his joy and shouted, “THIS IS THE BEST THING OF MY LIFE!” He often struggles with feelings of isolation, as do many children with special needs, and to see him so happy and in sync with his new friend struck a chord deep within my heart. Time seemed to freeze and we were mesmerized watching the two moving together as if in a dance. There was the feeling that we were alone with a magical creature in our own beautiful world.

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