Run Baby Girl Run| Spina Bifida Awareness Day 2020

October 25th is Spina Bifida Awareness Day. I feel that I don’t talk about Spina Bifida openly a lot maybe because the fact that our girl is doing so good in general and we really are “not aware” of her Spina Bifida much at all these days. I guess this is a good thing, right?

I sat down two years ago and looked back to see how I really felt about life with Spina Bifida. I wrote down my feelings for the first time. Ever since I have been more involved with our local Spina Bifida community. Looking at all the other children who have been touched by Spina Bifida, I definitely feel very blessed.

With that being said though, life is definitely not without any additional concerns. We have our regular check with the neurosurgeon coming up soon. We went to the orthopedic earlier this year to see if this girl has anything going on with her feet and legs or if she just has extremely tough feet. So far, all the specialists we saw this year helped reassure us that she is doing great.

Now she is older, she has definitely noticed her bump on the back and her surgery site. We started to tell her more about her condition and the potential issues associated with it—your feet don’t feel as well so please always wear shoes when going outside to protect your feet, etc.

I’m glad that she doesn’t seem to be overthinking about this whole situation. At the same time, I always wonder how we should approach this situation. I feel that I should tell her about the potential issues coming with it so she could be prepared to face future challenges. Maybe it’s just me or maybe this is a mom thing, I have to say that I still worry that she would be treated differently when people find out about her bump on the back or any other related issues. I do not want people to make fun of her or hurt her in any way and if someone does, I want her to know how to stand up for herself. I want her to know that her little bump does not define who she is and she has come a long way to beat the odds.

At the same time, I also wonder if we talk about the potential mistreatment around disability then we are actually planting this idea of discrimination in her unnecessarily. I wonder if we talk about this more, we would actually make her focus on her weakness instead of her strength. Are we making bigger of a deal than it should be?

This is definitely going to be an ongoing learning journey for both my girl and us as parents. I’m glad that I have a whole community here that we can support each other and figure life out as we go.

I am also extremely grateful for the Gospel. I just LOVE that God teaches us to be like Jesus and love one another. It gives me bright hope that I know my daughter is a daughter of God; she will be loved and be protected even when I fall short when it comes to how to handle some tough situations around Spina Bifida. I also know that while I would love people to be more aware of the people who are affected by Spina Bifida, I would really hope that we can all be aware that each one of us has our own struggles. I hope that I as a parent to a child with Spina Bifida and my daughter as a person with challenges coming from Spina Bifida can both use our experience to gain more empathy and love towards other people who are struggling. I hope that even though we don’t seem to be affected by Spina Bifida as much as some other people, we can learn from this to be thankful instead of taking it for granted. I hope that we can always be aware to help others because we have been given mush so we must give.

I hope that my baby girl can keep running full speed towards a bright future, full of life, full of hope and full of joy!