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LPA Today!

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I love getting my LPA Today! magazine in the mail! I am honored that a submission I made was printed!

aisforadelaide dwarfismawareness lpa today

Because everyone is not a member of LPA, I wanted to share it here:

As I delve deeper into my role as a parent- as an advocate- I’m coming to appreciate awareness months, but not live by them, but celebrate them and utilize their publicity as a catalyst for every other day. For our community, everyday is awareness day, an opportunity to educate.
People are, in general, aware of differences, what they don’t know is what those differences mean. Until recently, neither did I. I was, as many are, just aware.

Two and a half years in this amazing community, surrounded by some truly brilliant people, medical teams and pages and pages of information, I am just aware. I am aware that dwarfism exists, and at the same time, know not what that means.

I love the motto “I’m small that is all,” but that’s not all. At least not for us. Addie is small, and at the same time, she is not. Everyone knows my sweet Adelaide, as is common to our children- well known in their communities, primarily because of their differences. But she’s more than popular, and polite (she will shake your hand), and cute. She’s had multiple sleep studies, surgeries and has a team of doctors 300 miles from home. She has a 3 inch scar in the back of her head and hair that’s just growing back in from surgery. She can safely climb stairs- up and down- better than any average height child her age. She can carry and open a step stool, without assistance, to reach something she desires. She asks for help when she cannot reach something. She gets pushed for being small, already, but stands up and says, “NO!” firmly to the offender.

She’s more than just small.

dwarfism awareness lpa lpa today a is for adelaide

Our community is full of differences, in forms of dwarfisms and in their appearance in individuals. With all of the awareness posts, I think it’s important that we, as a community approach this- not just once a month, or when it directly effects us, but take opportunities and create them, too. There are challenges our children face, our community as a whole, and while they are not defining us, they are there. We can broach these topics, or leave them as elephants in the room that we continue to ignore and gloss over. Or we can embrace them!

Becoming aware of dwarfism is understanding that some children will be incredibly healthy- they will still have more tests than an average child. They will still have a disability. Yes. Say the word, do not swallow it. Disability. (It’s not a bad word!) But being aware is more than knowing- it’s advocating- even when you don’t know it. It’s educating others about the “m” word, and they, in turn, passing on the knowledge. It’s talking to your child’s classroom, passing a law banning dwarf tossing, pushing for new ADA laws that are more inclusive.

There is a rich history of dwarfism, and while 80% of all people diagnosed with dwarfism are born to a family with no genetic history, 20% are! There are generational families with children of all sizes and experiences. There are stories yet to be told, unfolding each day.

Our community is not going to be recognized and respected in a month- but in the daily chores of our days- in the embracing of both the triumphs and tribulations that we encounter. Dwarfism awareness does not end (or begin) with the month of October, but is a time to host events, speakers and publish what we broadcast throughout the year.

I’m proud of our community for educating every day, and I ask you to keep pushing. No matter your relationship to the community, let’s spend this next month and the following after that, spreading facts by doing. Celebrate the accomplishments- in all their glory. Tell of the painful moments- because there are many. Advocate for better and patient-centered care, because there needs to be more education as to what our community needs are and how they differ. Get involved in making change- whether it’s local or national.

Welcome November! May you be just as powered by green as October!

 

Keep pushing!

xo,

Filed Under: Advocate, Community, Dwarfism Tagged With: , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Comments

  1. Congrats on getting printed in the magazine AND thanks for all the hard work you do to raise awareness.

    Reply

  3. A great step in creating awareness on Dwarfism. I understand the challenges these children face & what the community as a whole faces. I would definitely get involved & do my best to create more awareness. Thanks for an inspiring post.

    Reply

  12. Wow, how exciting for you. Congrats… it was a great post, as well… She has been through so much and you are such a great inspiration and advocate

    Reply

  14. I love that you are such a passionate advocate. Having had the pleasure of meeting Addie in real life, I know she is awesome! Just like any other kid, but with much more cuteness! I couldn’t help but chuckle when she ran and slid under the shelf at BJs!! My two year old would do the same..they’d have a blast together.

    Reply

  22. I think there should be more education on this subjects before college. It would definitely help to raise awareness and understanding. Congratulations on your submission being published! You’ve definitely taught me a lot!
    Liz Mays recently posted…5 Reasons To Shop OnlineMy Profile

    Reply

  34. Chelly, this is a beautiful post and an inside glimpse on the subject. You are right that more needs to be shared in the public arena to educate us all. Once a month or once a year is never enough. Kudos on your piece in the magazine.

    Reply

  40. Congrats on the magazine. I think it’s really interesting to see dwarfism being “exposed” to social awareness the way it is. For so many years no one talked about it, at least in my world. So, the fact that I’m hearing more and more awareness and understanding must mean there’s a rising tide of support. I think that’s great!
    Debi @ Life Currents recently posted…Mushroom SoupMy Profile

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  42. Way to advocate for your little girl! Adelaide is beautiful and will no doubt grow up to be a confident young woman thanks to her caring and empowering parents. I love that you’re teaching her to stand up for herself and to say “No!” to children and people who push her around, that builds so much confidence and independence which I think are essential for every little girl regardless of her size. Also, there is a great book called “Stand Tall Molly Lou Melon,” it’s about a quirky and awesome little girl who is much smaller than her classmates, but she’s got personality and she refuses to be seen as small. I read it to my second grade kiddos every year and it’s a big hit.
    Sojourner recently posted…Honoring Ix Chel: Exploring the Mayan Ruins at San GervasioMy Profile

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  46. What a great article – thanks for sharing!! The more that people are educated, the less room there is for ignorance and intolerance. Keep doing what you are doing, and congrats!!

    Reply

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