Families and the SBAA Conference

Kari requested that we ask a family member about his/her experience with our child's Spina Bifida. My 13-year-old son really wants to share how he felt about learning about his sister, how he feels during her hospitalizations, and especially how he feels spending his summer vacation at a conference dedicated to her Spina Bifida.

However, as with most 13-year-old boys, he's kind of busy. I know he has started composing something, but if I know my son, he's going to make it as perfect as possible before he gives it to me. I'll post his thoughts as soon as he makes them available....

In the meantime, I've spent the last couple of days at the national conference. It has been amazing. I've learned a lot. And I've got LOTS of questions for Esther-Faith's doctors. Here are some of the things I've learned so far...

1. Every child is different. Every family is different. What works for one family may or may not work for another family. But we all have a combined experience: we have a child (or children) or a family member or a friend whose life has been touched by Spina Bifida.
2. See the list down the side? That list represents families and children. Real families. Unique children. Meeting some of those moms and dads and kids was the absolute highlight of my conference experience. Putting actual faces with names. Seeing them smile. Or nod. Or understand in a way that only they can understand. Carson’s mom and dad. Greyson’s mom and dad. Mattie's mom. Special people. The. Very. Best.
3. Because each family is unique and each child is unique, there is not a “one size fits all” treatment for anyone. Not for the bowel. Not for the bladder. Not for hydrocephalus or shunts or IEPs or orthotics or any of it. What’s true for one L4/L5 child may be different for an L5/S2 child. Or it might be very similar. And an L2/L3 might present like an S1 child. Every child is different, but we can all benefit from sharing our stories and experiences with each other.
4. You, the parents, are the ONLY true experts about your child. YOU know if your son or daughter has an attention deficit or if they are curious about everything. You know if your child is going to (or has) respond(ed) to a balloon cleansing enema or if you can buy over-the-counter pedialax and it will work fine. You know if your child has multiple recurring UTIs or if it is the same one over and over again. YOU know if your child will benefit from a play group or from a formal preschool program. YOU are the expert. YOU know if there are changes. YOU spend the most time with your child. YOU know what your family values and what you’re willing to sacrifice for your family as a team. Trust your gut.
5. Spina Bifida can be an overwhelming disability at times, but there is a HUGE network of families and blogs and web sites and friends who are already walking the same road. Some families are farther down the road. Some children are grown and can provide a retrospective view of growing up with Spina Bifida. Some are coming behind you and can benefit from knowing what you’ve already learned. But, there is a lot to know. A lot to learn. A lot to remember. No one has all the answers. Not even the doctors. It’s important to share our stories and respect that even though our children have similar diagnoses, we all have something to bring to the table.

Are/were you at the conference? What did you learn? Who did you meet? Did you find anything overwhelming? Reassuring? Surprising?

Kari has created this great forum for us to share our stories and lessons. Whether you're a family member, a person living with Spina Bifida, or a parent at any stage of the journey, you can email her at kari.leann@hotmail.com if you’ve got something to share.