Sunday, July 3, 2011

Spina Bifida Conference

We just returned from attending our first (and hopefully) not last National Spina Bifida Conference.  I am still in a state of awe.  It is almost overwhelming to even sit down and write this blog post and figure out how to include everything without writing a novel.

First and foremost, it was absolutely amazing to have the chance to actually meet in person the women, men, and kids that help keep me going.  They are my resource when something new comes along, my cheerleaders when I feel down and my new family.

The conference started off with a presentation from the doctor who headed the MOMS study.  This was a study that was conducted in three states where mothers who were pregnant with a child who had Spina Bifida were initially interviewed to see if they qualified for the study.  Once qualified they were divided into the prenatal or postnatal groups.  The prenatal group underwent surgery to repair the babies lesion while still pregnant and the babies lesion was closed.  The postnatal group was also followed but their babies lesion was not closed until after the birth.  The study was so successful in showing that the prenatal babies did better that the study was ended early.    During my pregnancy I was given a very small amount of information about the study, but knew that it would be difficult to adjust our lives to be able to participate.  I would have to leave my job quite early in my pregnancy and be away from Lauren for several months.  Looking back, I maybe should have done more research on it, but I've learned not to dwell on things which I can not change.  Evan is who he is...and he is perfect.

Over the next few days of the conference, I attended a variety of sessions covering orthopedics, neurology and urology.   I learned so much in such a short period of time.  I learned how much is really involved with a child/adult with Spina Bifida.  We have a long road ahead of us with many unknowns.  I have a lot to still learn and I can only hope that I am knowledgeable enough with my decisions to give Evan the best outcomes when the time comes for those decisions to be made. 

As enriching of knowledge as these sessions were, they also at times were mentally exhausting.  As I would look around at all of these sweet kids and kinds adults who were living with Spina Bifida, it was heart breaking and unthinkable of why they were chosen to be born this way.  Each of them are stronger and braver than I will ever understand.

While I was at conference Evan attended Kids Kamp.  He had the opportunity to spend a few days with other kids his age who also have Spina Bifida.  My hope is that in years to come we are able to attend more conferences and he can get to know these kids better.  I learned how important it is through my own experiences it is to have people in your life who truly understand what you are going through.  I worry about how Evan will relate to his peers once he starts school, but I know that no matter what his SB friends will always accept him for who he is. 

On Monday evening a big group of families met for some social time.  These are some of the moms that I have gotten to know well over the past few years.  It was a night I will always remember.


  1. Pleasure meeting your family. You all are even sweeter and better looking in person:). It was like I was meeting a celebrity family. You know what I mean and as for how you felt, I get it. Wasn't going to Holland awesome!

  2. I'm so bummed we missed it this year. i'm glad you had an amazing time!

  3. It was so great to finally "meet" you Lisa!! I am still smiling when I think of sweet Evan hugging me!! What. A. Doll. You were both sweeter than I ever imagined and it was a joy to spend time with you and experience the conference together. :)