On the evening of May 24, 2010, I very distinctly remember where I was sitting and what I was doing. I was on my computer, googling “spina bifida.” That very morning, John & I had been in an ultrasound room where the doctor informed us the baby I was carrying would be born with this, gave us our options for the pregnancy, and sent us on our way. We sat in the parking lot of that office for the longest time, crying, shocked, wondering if we didn’t pray hard enough, or why God would allow this to happen to our family.
My google search that evening led me to a gamechanger for our family. I truly believe even then, that the Lord was providing a means of support for us, of education, and of hope. I remember finding a group on a popular parenting website for parents of kids with spina bifida. I typed in my message, not even really believing I was putting those words down–“my child was just diagnosed with a disability. Spina bifida.” Immediately, responses flew in, and I remember one mom in particular who asked me what state I was in, and when I typed back “Kentucky,” I had an immediate response to “call me tomorrow!”
That conversation, and that website, led to John & I learning how to navigate this new path. Doctor’s visits, paperwork, all our questions. So much unknown, and yet every time I had a question, I knew who to ask. It wasn’t the doctors or the specialists necessarily, but rather, the parents I’d found who lived this journey day to day.
When the opportunity came up to travel to the National Spina Bifida conference this year, I jumped at the chance. This was the first year I really felt ready. Before that, all the topics, sessions, questions, walkers, wheelchairs, etc., would have intimidated me, and I knew I wasn’t ready for all the possible answers I’d receive at an event like that.
But this year, I couldn’t wait!
Quite possibly, one of the strangest things in life is having someone walk up to you, know you by name, know your child’s name, and yet you’ve never met in person before. That happened time and again at the conference. The neatest thing was when John & I attended the parent chat session for parents of kids 0-5 yrs, and as each parent introduced themselves and gave a little history, I would think, “I KNOW them!” even though I didn’t recognize them. It was so nice to have conversations with so many parents who “get it.” I could’ve spent hours talking with some of those parents. It was also very cool to meet and talk with so many adults with spina bifida. I can honestly say, when I was first pregnant with Zoe, I feared so much for her future. Would she be independent? How would this affect her ability to do the things she wants? Now, I no longer have that fear. Heck, I met adults with SB at the conference who were more athletic than me! Zoe can and will do whatever she wants to do!
We gained so much knowledge and info at that conference. Honestly, we are still processing it all, and coming up with a plan to put it in action for Zoe’s benefit. The final session of the entire conference was probably my favorite. An entire panel of teenagers, all siblings of children with spina bifida, lined the front of a room, and parents were able to ask whatever questions they chose about growing up with a special needs sibling. It felt like a therapy session to me, and I’m sure to so many other parents also by the number of sniffles and tissues being passed around. I think every parent’s fear was addressed at that session–did the siblings feel resentful, of the parents or the SB child? Did they get left out? Jealous? How has it affected them now? Etc., etc., etc. I was so encouraged to hear their responses, as it is always in the back of my mind how to best balance the needs of both Faith & Zoe. Therapies and appointments can take away so much time, and it was so neat to hear every.single.sibling on the panel reassure parents that there was no resentment, jealousy, or fear. These siblings truly loved the other, and many planned or had already went on to work in the special needs field. I just kept imagining Faith one day, possibly even on the sibling panel, and the lady she will grow up to be, and thinking of how having a sibling with some extras could influence her in a positive way.
We are all still getting settled in at home. Travel, an unexpected virus for me, and all the laundry that goes along with traveling are finally all settling down. The best news is that upon our return, Zoe hit a long-awaited milestone–CRAWLING! We had waited, patiently at times and rather unpatiently at others, for her to get it. And she did it. In her own time. Just like ALL those other, more experienced parents had told me she would. I am so thankful that I do not have to walk this journey alone, that there is so much support available now. I miss those times at the conference and all those sweet parents I met so much. I honestly didn’t expect it would be so much more than educational for me. It was therapeutic–it gave us a new direction for Zoe, new hope for the future, new friends, and so much more.
Can’t wait till next year!!