StoriesJun 26, 2019

SBA of the Carolinas: Reflections from Teal on the Hill

Jordan Sims, adult with Spina Bifida

More than the pride of speaking up on the “big stage”, more than the excitement of being back in a city I love, even more than the ease of being with people who “get” life with Spina Bifida, the most important thing I got out of this year’s Teal on the Hill was a sense of personal responsibility. 

To advocate, yes, especially in the area of healthcare. But the reality is, we aren’t going to fix the problem overnight. Sharing guidelines with one doctor isn’t going to make them an expert and ensure that we have excellent care for life. Being an adult with Spina Bifida is still largely uncharted territory and we’ve got our work cut out for us. 

That doesn’t mean we stop trying, stop looking for doctors who are willing to learn or stop coming together as a group in order to let our voices be heard. But what else can we do?

For me, the answer is taking better care of myself. 

Ideally, I should be seeing at least three different specialists once a year. In reality, I’ve seen two of them a handful of times (and only the same doctor twice) in my adult life and the third I have not seen since I was a child. If something goes wrong, I don’t have much of a safety net. 

Because these “special specialists” (specialists who also have knowledge of SB) are so hard to find and keep, I feel a greater pressure to maintain the level of health I have now and improve where I can.  

There are a lot of things I cannot control when it comes to my health, but I don’t do a very good job of handling the things I do have a say in, like what I eat, how much water I drink and whether or not I move at all on a given day. 😛 If I want to improve or even just maintain the health I have now, especially without the aid of doctors at the moment, I need to make some changes and I need to do it for the right reasons. 

This conviction was strengthened by some of the new friends I made this year. Friends who, for lack of a better word, have inspired me. To do better, to be better for myself. I was so impressed by the women who are active and physically fit and strong, despite facing many of the same obstacles I face. It made me want to refocus my constant obsession with the scale and weight loss “quick fixes” and remember all the GOOD I could be doing for my body by taking care of it. 

Since then, I have tried to focus on eating things that are nutritious and beneficial, rather than yoyoing between junk and what I think will drop weight fastest, but leaves me feeling deprived and starving. I have actually done an okay job, despite my chronic misfortune in the kitchen. (The key is lots of salads and fruit. :P) However, I still have my vices and I wanted to refine my “vision”. 

Marie Delgado, mother to Danielle, born with Spina Bifida

I am humbled and amazed at the opportunity my family had at Teal on the Hill. I am surrounded by an amazing community of individuals who have spina bifida or love someone who has spina bifida. It was an amazing experience advocating for my daughter, advocating for her future, advocating for future children born with SB, advocating for current adults and learning the legacy of past adults who have traveled this path who advocated for a better future. 

We met with 6 different representatives and/or their staffers to share our SB story and ask for more funding for continued research for those living with SB through the CDC, asked to stop the competitive bidding program on wheelchair accessories, and asked members of congress to join the SB caucus.  I also shared that because of those that have come before us, my daughter has a chance to live and thrive.  During our visits we learned of one representative that had a sister that was born with spina bifida and lived to be 2 months and 2 days old.  I got chills sitting in his office as he shared about his sister.  That could have been my family sharing that story if it weren’t for the research and medical advances that exist today.  I hope that by advocating and speaking up for the SB community, every member of our community will be able to thrive and live the life they all dreamed of living. 

I loved advocating beside her urologist and other staff from Duke Children’s. If you are ever wondering if you should come to Teal on the Hill, I say yes.  This is an opportunity everyone should have at least once.  Thank you to the chapter for the scholarship that our family received to help us be able to attend this life changing event.  This Spina Bifida path my family is on sometimes can feel lonely and isolating, but this week it was inviting and welcoming. I am beyond grateful to be a part of this strong community!