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