I am going to tell you a story about an important lesson I learned, and how that lesson helps me today.
As a single young adult, I had a very hard time finding a church that made me feel at home. No church compared to the one I attended as a child. When I walked into these churches, I didn’t feel welcomed or a part of anything. It was just a building with people in it that happened to be a church. I went to mass, but the warm fuzzies never came.
After a few years of church-hopping, I got married, finished my MBA, quit my job, packed up my life, and moved to Cincinnati with my husband for a brand new adventure. We settled into a small community on a hill that had a Catholic church a block and a half away from our apartment. Because it was convenient, it became our church. It was fine, but again, I struggled to feel a part of the community.
When summer came, the church held their annual festival fundraiser. As two dutiful parishioners, we bought tickets in each of our names to the $10,000 raffle. To my amazement, I got a call at midnight saying my ticket won! It was at that moment I realized we had never “officially” joined the parish. They were very kind, but they didn’t recognize our name or know who we were. We had been going to mass regularly, but never introduced ourselves, or declared our intent to be a part of their community. We remedied that as we picked up our winnings.
Once we joined, we also started getting more involved. That’s when things started to get interesting. The more I got involved, the more at home I felt. That was when my real “aha” moment struck. In order to feel part of something, you actually have to make an effort to BE a part of it. It’s not magic. People don’t pull you in without any work on your part. I should have realized this, but it never occurred to me.
I find this lesson holds true across many things, and I appreciate that I learned it before my daughter was born.
How this lesson has helped me today:
We got involved in our local Spina Bifida coalition very early. When I say we got involved early, I mean EARLY. We got my daughter’s diagnosis at 20 weeks into my pregnancy, had all sorts of testing in weeks 21 and 22, and then attended a Spina Bifida families community meeting around week 28. By the time she was a year and a half, I’d joined the board of directors, and attended my first symposium on advocating for a child with special needs.
Being part of this community has been a blessing. We connected with families who could answer our questions and share what they learned along the way. More importantly, it gave us a place to belong when we were at the scary front end of this adventure. It now gives Lily a place to belong, and lets her know there are others out there just like her. And with a few years under our belt, it gives us a place where we can give back to others.
I must admit that for some, getting involved as early as I did may not be the best thing. When my mom, husband and I attended that families meeting before Lily was born, I left feeling encouraged because my natural tendency was to focus on the fact that the kids were laughing and playing, and in many ways like other normal kids. The meeting gave me hope. My husband, on the other hand, left feeling discouraged and worried. His natural tendency was to focus on the kids with the greatest challenges, and the scary surgeries the group was discussing. He didn’t attend another meeting until months after Lily was born. It was simply too hard for him at first.
Now that I’m a few years in, I find myself wanting to deepen my involvement even further, stretching beyond the Spina Bifida community and into the greater community of special needs. The more connected I get, the more empowered I feel, and the more comfort I have in knowing I am doing and learning everything I can to enable my daughter.
When you’re ready, my challenge to you is to:
- Find a community
- Get involved
You will get back more than you give. I even have a couple of suggestions for an easy first step that doesn’t require any long term commitment.
Come join me at these events!
If you live in Cincinnati, the ReelAbilities Film Festival starts this weekend. It is the largest national film festival dedicated to celebrating the lives, stories and art of people with disabilities, and runs from Feb 27 to March 7. Ticket sales from each film benefit a local nonprofit focused on disability. You can view film trailers and buy tickets here: http://www.cincyra.org/films/.
As part of this festival, I am helping host a great, thought provoking film called “Fixed: The Science/Fiction of Human Enhancement” on March 1st at 2pm at the Cincinnati Museum Center (Union Terminal). Your support of this film will benefit The Spina Bifida Coaltion of Cincinnati. Here is where you can buy tickets ($10) to the film, Fixed.
If you are not in Cincinnati, but would like to attend a festival like this, you might be in luck. ReelAbilities now hosts festivals in over a dozen cities. Find your city’s festival here: http://www.reelabilities.org/
The Empowering Families Symposium is March 13, 2015 from 8am-3pm at the Xavier University Cintas Center. The one day conference costs $25 and includes speakers, access to community agencies and companies specializing in special needs products/services, breakout sessions on a variety of topics (communication, advocacy, education, behavior, and financial assistance to name a few), as well as breakfast and lunch.
I hope to see you at the festival and the symposium!