Earlier this year, there was a lot of chatter about the Little People of America’s 2018 National Conference in Orlando Florida.
In my head, I immediately thought about Disney and summer fun. I also stutter-stepped at the thought of Addie, who doesn’t do so well in extreme heat and humidity, can’t walk too far, and the July Florida weather- which is often unpredictable and errs towards excessive rainfall.
But there was more on my mind, because I know we’ll figure out all the little things… families began asking if a membership was really important to themselves, their child, or their family. And why.
My heart opened up, I could feel it beating faster as I took notes and jotted down ideas. Pages and pages of why: YES! A membership is important.
Financially, we began with the one year membership- knowing this would give us access to more information, connectivity in the community and was integral to going to our first LPA National Conference in Washington, DC in 2013. The cost was minimal, and it gave our girl (and ourselves) a good feeling of belonging.
It was there that I met some of the most amazing people… including Bill Bradford, who rocked my world with his wit and charm. His sense of humor and his poignant Sunday service. His recent passing reminded me that life is fragile and connections are important…
So I gathered my notes, recalling countless conversations had with friends like RC, LS, JS, MM, CA, SF, CP… the list goes on and for that I am most grateful. In the words that have passed from friends over glasses of wine, phone calls from the hospital, emails late into the night, morning text messages- I have learned that a membership is incredibly important to so many individuals and families and for so many reasons.
We were blessed with a Lifetime Membership for Addie a few years ago. The details of the gift are heartbreaking and I’d do anything to not have had the opportunity. But that was not the plan, and our sweet love now has the opportunity to be a part of LPA, in whatever capacity she chooses, for her life.
And that is why this is so important.
If I could first start at membership basics: all relatives living under the same roof as the LPA member also have membership benefits. I encountered a few parents, aunts and uncles, grandparents, who go to LPA events to learn and continue their connections, even during years where their family member with dwarfism has taken a step back from community events. This I found, at first, to be odd… but once those bonds are formed, I found that events both regionally and nationally, are like family gatherings, and even if one person can’t make it, that doesn’t mean we call the celebration off.
That’s where the most benefit lies for our family. We can all have access to the parts of the LPA that we need- the community, information, connection, medical advisory, groups and gatherings. There is no set way to be a member. We choose.
A question I often hear is: what if my child never uses this membership?
I felt the same hesitance, which is why we wavered on buying the lifetime membership, and after our first year, we chose to purchase the three year instead. It was at this time that another friend of mine, also a mother of 2 (almost 3!!!!), and a very active member of the LPA, as well as an advocate and disability policy maker, pioneer of vast terrain advancing women, disabled, children, immigration… she’s kind of amazing- but I digress. We had a conversation, and in it she told me that where she is now, and her feelings are not always what they were… but that she always had the option to come back.
And sometimes, the places we call home are not always the places we are. It’s not always where we land, or where we’re active in our daily lives, but home is always there. In our hearts and minds. It’s the place that we can get back to, hopefully.
I wanted Addie to have that.
And so we are members
Since Addie’s birth, we have gone to over a dozen LPA events, 3 nationals (DC, San Diego, Boston), and made connections that have spanned well past community need, medical advisory, or general acquaintances. We have love, support, friendship. We have a lifetime of memories ahead, and a lifetime behind.
There may be years she doesn’t want to be a part of the community in such a high capacity, she may choose to always be active. But the biggest gift we can give her is the access to choose and the support in those decisions.