At our 21-week prenatal appointment spina bifida entered our lives. So much fear and uncertainty hovered in our minds on that day four years ago. If we had known then, what we know now it probably would have eased our racing minds a bit. I still would’ve felt fearful, unprepared and unqualified to become the mother of a special needs child. This is coming from someone who is afraid of passing out at the sight of blood. I know I would’ve still been overwhelmed to make the medical decisions required of us over the past four years.
But what I also wasn’t prepared for was the amazing little girl that we would be raising. Rory, who is smart, funny, determined and fearless, has definitely helped guide us along the way. I also didn’t know that with her birth, we also became a part of a special family, Spina Bifida Association of Kentucky (SBAK). SBAK has helped us so much throughout our journey so far. I cannot possibly list all of the ways SBAK helps us, but I’m going to try. Over the past year this is what SBAK has been able to provide for our family:
- Walk n Roll- this is a fundraising event, but it’s also our chance to have fun and celebrate.
- SBAK trip to Gallrein Farm
- Kosair night at Boo at the Zoo
- SBAK Christmas party
- Kosair Christmas party
- Support during Rory’s surgery in December 2017
- Play Pal group
- SBAK Easter egg hunt
- Spina bifida clinic at Norton Children’s Hospital
- Camp for Courageous Kids
- Magic Show
- Growing up with spina bifida group
- SBAK Symposium
- Summer pool party
This is the short list, it could go on and on, but I just wanted to give you a snap shot of some of the programs that SBAK provides for us and all the SBAK families. This may sound selfish, but I know how important SBAK’s work is to me and our family now, but I can’t imagine what it will mean for Rory in the future. We are so blessed with the people we have met, and the incredible resource and support they have become for us.
Please donate to our Walk-n-Roll team so SBAK can continue their amazing services. Rory and Declan are obsessed with Paw Patrol, so our theme is Rory’s Patrol is on a Roll. We would love for you to join us at 10:30 on Saturday, October 6 at Iroquois Park.