twitter facebook stumble upon rss

One Small Step

posted Saturday, May 22, 2010
filed under: kids
sign up for the momlogic newsletter Tweet This
Dr. Cynthia Paulis: A hurricane was pounding the coast of Bermuda, and even though it wasn't expected to hit the Northeast, the fallout was beginning to take effect on the south shore of Long Island. To escape the blistering August heat, I decided to take a walk on the boardwalk and let the ocean breeze fill my lungs with sea air.
 
brace-girl.jpg
The ocean was magnificent. Thundering waves, their powerful white crests six rows deep and 15 feet high, crashed on what remained of the beach. Nearby, seagulls mocked the small birds as they retreated from each wave. After watching the avian show, I decided it was time to keep walking. The fragrant primroses that had once decorated the dunes with their delicate pink and white flowers had now been replaced by plump orange seedpods, the hallmark of fall. 

In the distance, I saw a man walking backwards with a camera, a woman in front of him and, in between them, a little girl roughly 4 or 5 years old. The man and woman were applauding and cheering the little girl on as she walked the well-worn planks, recording each step she took with the camera. The little girl's knee-length floral dress swirled and danced with each breeze around her stiff legs. Only something was wrong. The jubilant little girl was tethered to a bright green aluminum frame on wheels by several black belts that looked very much like seat belts. 

I watched her clumsily navigate the wood planks. Her face was a sight to behold -- unusually wide green eyes framed by dark, soft brows and a joyous smile that illuminated the boardwalk. As she took each small step (with the encouragement of her parents), she broke into a victorious yet silent smile. Her smile was so contagious it even made me smile and cheer her on. At one point, you could tell she was starting to tire as she let her entire body weight fall forward at a 45-degree angle, only to be rescued by the black seat belts holding her tightly between her legs and around her waist. Yet this momentary setback was followed once again by a radiant smile as she soldiered on, placing one foot clumsily in front of the other. 

My curiosity as to the child's medical condition took over. I introduced myself to the parents, explained that I was a physician and inquired about the child's medical problem. "She has Angelman Syndrome," the father responded. I have to admit that I felt stupid. After 29 years as a practicing physician, I had never heard of this disease. The mother explained, "She is missing a chromosome." 

Apparently, this disease leaves a child with the inability to talk and walk, yet he or she remains blissfully happy. Another term for this disease (as I learned later that night, via Google) is "Happy Puppet Syndrome," since the child is mute and happy and all forms of movement appear puppetlike. The mother graciously continued to share with me information about her daughter's caregiving, which involved daily spoon-feedings, physical therapy, a sleep-apnea monitor at night (with alarms that go off when she stops breathing) and a heart monitor that checks her regularly. I was taken aback as she systematically and cheerfully explained her daily routine. 

The little girl's brother, a blond 8-year-old boy, was glaring at me from the edge of the boardwalk while his concerned grandmother waited patiently as I questioned the parents further about this curious disease. The mother continued, "I told the pediatrician that something was wrong with her when she wasn't walking at age 2 -- only to be told that I should stop comparing her to her brother. I knew something was wrong, but they wouldn't listen to me. We finally took her for genetic testing, and that's when we found out that she has Angelman Syndrome." 

I really didn't know what to say at that point. I didn't understand the disease that she was clearly so well-versed in, and I was embarrassed for my profession because my fellow doctors hadn't listened to the mother when she'd instinctively known that something was wrong with her child. "This is the first time she has ever walked," exclaimed the father as he proudly recorded each precarious step his child took. 

I looked at the little girl one more time and realized that I was witness to something extraordinary. She looked me straight in the eyes and gave me a big smile. Then, placing one small foot in front of the other, she awkwardly lurched forward, one step at a time, for her victory lap across the boardwalk. The wind picked up, and as the waves crashed against the beach, it almost sounded as if nature were also applauding her. 

My eyes welled with tears as I looked to the ocean and watched the plovers run in and out of the waves. With determination and the love of her parents, this little angel was doing the impossible: walking, miraculously, one step at a time.


next: The World's Smallest Jeans
102 comments so far | Post a comment now
Yvonne Dagger June 11, 2010, 12:26 PM

Dear Cynthia,
What a beautiful story this is. You are an exceptional writer. It was wonderful meeting you last evening at the Masquerade Ball with Debbie and YaYa.
Please keep in touch.
Best,
Yvonne Dagger

Yvonne Dagger June 11, 2010, 12:28 PM

Dear Cynthia,
This is a beautiful story. You are an exceptional writer. It was wonderful meeting you last evening at the Masquerade Ball with Debbie and YaYa my CCI Pup in training.
Hae a great weekend and please do keep in touch.
Best,
Yvonne Dagger
www.yvonnedaggerartist.com

Goroadactox June 24, 2010, 11:40 PM

sexy nude kate beckinsale http://community.getk2.org/profile/KateBeckinsalenude - kate beckinsale nude

marcus housewright October 4, 2010, 11:52 AM

This is one of the most heart felt and compelling stories i have ever read.

Online Banking October 13, 2010, 7:56 PM

Thanks for sharing this helpful info!

Online Banking Saftey October 18, 2010, 10:17 AM

Glad to see that this site works well on my Google phone , everything I want to do is functional. Thanks for keeping it up to date with the latest.

Diego Delabarre October 25, 2010, 2:31 AM

We’ve already established that regarding.

Nada Hytros October 25, 2010, 4:07 AM

My mum and I want to create a blog much like this for our website, I stumbled across your website looking for ideas on the theme and page layout. I am taking some coding class in college but not confident that I would have the ability to create a blog like this one just yet. Did you code this blog yourself or hire a professional?

Elfriede Lokan October 26, 2010, 2:03 PM

Looking at this page I am positive that i might possibly know through the university, probably did happen to go to Texas Tech? In the event you did remember to send myself an email so we are able to get up to date it has been a very long time! Anticipate conversing with you and hope all is good with you.

black friday laptop October 27, 2010, 12:59 PM

It is uncommonly prominent to shock a resemble proper distress of all your ornaments pieces so that they form quest of a lifetime. There are unalike approaches and ways to clean different types of jewels be it gold, silver, pearls, diamond or marvel stones. Outlined below are the several ways by which you can take care of your accessories and nurture them flickering and redone always.

Alec Sillitti October 27, 2010, 1:28 PM

I am frequently in search of somebody to trade article content with, I’m a scholar student and possess a blog here on our campus web site. The subject of this weblog and writting design and style would likely go great in some of my category’s, inform me should you be up for this.

Isaiah Groshek October 27, 2010, 5:37 PM

I have Been There Done ThatThat’s been somewhat high intensity recently.

Kelsi Bridendolph October 28, 2010, 7:20 AM

There are some rules with reference to that you should be concerned concerning.

Jewels October 29, 2010, 8:27 AM

To be a noble human being is to from a kind of openness to the far-out, an ability to trusteeship unsure things beyond your own control, that can govern you to be shattered in unequivocally exceptionally circumstances pro which you were not to blame. That says something uncommonly important relating to the fettle of the honest life: that it is based on a conviction in the up in the air and on a willingness to be exposed; it’s based on being more like a spy than like a sparkler, something rather tenuous, but whose acutely item handsomeness is inseparable from that fragility.

Norman Glasscock October 29, 2010, 10:11 AM

How do people smoke out online products?

Elwood Smithen October 30, 2010, 8:45 AM

Maybe that’s occasion to refine my goals.

Trevor Maalouf October 30, 2010, 6:03 PM

I sense that was skillfully managed.

Jody Wesloh October 31, 2010, 1:23 AM

How can teachers chance upon premium wares?

Ann Schroen October 31, 2010, 9:21 AM

This is a have more getting rid of that.

Toshiko Varian November 2, 2010, 4:58 PM

That’s an interesting article. I just wondered whether you could let me know where to find more information on this subject?


Leave a reply:



(not displayed)

     




Avoid clicking "Post" more than once
Back to top >>
advertisement

featured gallery

Gwen Stefani and Family at the Park

momlogic tweets

recent activities