Welcome to all of my new visitors! You came at a great time, because these last weeks have challenged me to remember why I write and how our story is for everyone. Whether you are familiar with the special needs world or you feel rather uncomfortable with it or are somewhere in between–this post is for you. And if what you read resonates with you, I would be honored if you would consider staying in touch through our weekly newsletter (just look to the right). Thank you for reading.
A few weeks ago, I went to a conference. To be honest, I don’t exactly remember why I decided to go. I guess it was because a friend invited me and my brother wanted to go. Apparently, I did not have a particularly great reason for why I was attending or what I hoped to gain. 😉
I became even more unsure when I arrived and realized the entire thing was about networking, business strategies, fundraising, etc. (Okay, so I definitely did not do my homework!) But suffice it to say, engaging people about special needs and what it means to have grown up with a special needs sister was not at the top of my mind.
Yet after three days of introducing myself to new person after new person, it hit me…
This is who I am.
No matter whom I talked with… no matter what we found as common ground… no matter if we “clicked” or didn’t…
I always talked about growing up with Alyssa.
It helped me remember why I write this blog. Why I will always need a place to write and share. Because this is the one thing in my life that will never, ever change. It is simply a part of who I am.
I meet someone, tell them my name, and we jump straight to “Tell me about yourself” or “What do you do?” And always, Alyssa comes up. Every. single. time. And when she does, I always have the chance to go further. Because every person I talk with is impacted by the beautiful special needs people in our lives.
There are those who know what it means to grow up with a special needs sibling…*
Such as Jill. She heard me telling someone else about Alyssa and came up to chat. With tears in her eyes, she shared about her sister. A sister Jill always looked up to. A sister who was diagnosed with a brain tumor when Jill was just 10 and was never the same after surgery. A sister who then passed away several years later.
Jill and I talked. She told me how very lonely it was when she was little; how no one else understood. She told me about the times she got angry and frustrated; how that memory haunts her–even today, years later. She told me how she missed the sister she had always known.
And those of us who grow up with a special needs sibling understand. We understand lonely. We understand people not always understanding. And while many of us are still blessed to have our sibling with us, we can understand what it is to miss having the brother and sister who used to be or who might have been.
Then there are those who know someone with special needs…
Aurora told me about her friend whose brother has special needs. He comes to visit with the rest of the family and enjoys riding their horses. She has loved getting to know him and just knew that her friend would enjoy reading this blog. George told me about his niece and how he hurts for her and her family because of those who just don’t understand. And I was encouraged that there are those who are advocates for my sister and others like her.
And there are those who are completely disconnected, but don’t want to be…
I also talked to Dan at the conference. He didn’t have a sibling with special needs. He didn’t know anyone with special needs. Yet he jumped to tell me about the gal in a wheelchair at church–and how he doesn’t quite know how to talk to her. And the checkout guy with Down Syndrome that makes him feel slightly uncomfortable. He told me how he doesn’t want to be that person… but simply doesn’t know how to change.
That’s when I realized…
Our story is not just about us.
Sometimes, we just see the everyday. The normal. The tantrums and the messes. The crazy moments we swear we will never, ever tell another human being.
Sometimes, we miss the bigness of it all. But our stories ARE unique. And we have a chance to share the beauty and the heartache and the hilarity of this life. Not just because we want to talk. Not just because someone is there to hear.
We share because it is who we are. And who we are can impact who others can become.
So who are you? What is your story? What is your connection with special needs people? How has that connection impacted you?
*Names and some details to protect the privacy of the individuals who shared their stories with me. If any of you are reading–thank you for sharing your story.
Picture from http://blog.ncpad.org, used under a Creative Commons Attribution License.