Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Just Say HI!

When Scott and I decided to move to Los Angeles over three years ago we weren’t too sure about what to expect. It was scary and unknown. What we found were the some of the best therapeutic & medical resources in the country and a village of other families just like our own. Families who could relate perfectly to our journey. And it helped us to feel “normal.”

What I also found was anonymity. Because while I had my village, I was also in a city with millions of other people. If you know me, you know that I love being outside and I love walking. And when we were out walking around in a city with millions of others, no one paid any attention to us. I walked down to the same grocery store in my neighborhood several times a week for over two years. And no one ever learned my name, and I never gained familiarity with the employees or other patrons there. And I loved it. I needed it. I needed to be unnoticed. Los Angeles gave me anonymity and time and space to grieve and start to heal. But then things started to change. The grief softened, we found our groove with Elodie, and Dutch came bouncing into our lives. It hit Scott before me, but we both got to a place of no longer wanting such anonymity. We missed home and everything that comes with “home.” We missed our South Louisiana community and everything that comes with being part of such a special place.


So, we returned to Lafayette, and it’s mostly been a really good decision for our family. And now, I cannot leave the house without seeing someone I know, and I love that. But there’s something that’s really been eating at me lately.

When I leave the house with Elodie, my interactions with the world look vastly different than they do if I’m with Dutch or by myself. We’re in a community of super friendly and hospitable people. People smile and say hello if I’m with Dutch. They make eye contact and they engage in a warm way. If I’m with El, people are much less likely to engage or talk to her and often try to avoid eye contact. Or, we get looks of pity which is worse. Listen, I know that interacting with her can be uncomfortable. It’s okay to feel uncomfortable. It’s okay if you aren’t sure what to say. A simple “Hey El, it’s good to see you. I hope you’re having a good day,” will suffice. You might feel awkward. She’s unlikely to respond back to you. You aren’t going to be sure if she heard you and you aren’t going to be sure where her wobbly eyes are looking. I’m asking you to step out of your comfort zone. But remember this, she’s already had to endure more hardship than most of us will in a lifetime. It’s okay if you feel a little bit uncomfortable. But more importantly, remember this, she is a 5 year old little girl who is fun and sassy and I promise she is listening. There’s actually nothing more that she loves than when people engage with her. (Except maybe eavesdropping, she loves that, too.) You don’t need to worry about saying the right or wrong thing. Just say hi. I think taking Dutch out and have people interact so freely and be so friendly with him has made me really sad for El lately. You don’t need to be afraid of her or afraid of saying or doing the wrong thing. Treat her as you would treat any other little girl.

And another thing, if you’re with your kids and they start pointing and whispering and wondering why another kid is in a wheelchair or looks and acts differently from them, that’s okay too! Please don’t shush them or be embarrassed by their questions. I LOVE the questions we get from other kids. It’s a beautiful opportunity to create awareness and acceptance in our culture. Kids are usually very open and accepting- we adults teach them to be otherwise. When we tell our kids not to point or look at people in wheelchairs what we reinforce is this idea that people with disabilities are “less than” and “weird.” Please don’t transfer your discomfort with disabilities onto your children. Let’s break that cycle. We’re all learning and growing all the time. I know that 5 years ago this world of wheelchairs and disabilities was nowhere on my radar, and I know that now being a part this world has made my life richer. It’s made me a better human being and member of society. I was forced to step out of my comfort zone. I’m asking you to do the same.

One of my closest mentors recently shared with me how much getting to know Elodie has impacted and changed his life. He told me a story of going down to the barber shop in New Iberia and coming across a mom and her disabled son. He intentionally took a moment to stop and say hello to the little boy and got back a big smile in return. He recounted that story and shared that before meeting Elodie, he would have never stopped and talked to another kid in a wheelchair. He shared how much getting to know Elodie has impacted his own personal growth. And I guess that’s why I’m sharing all of this with all of you. Because if he, at over 70 years old, can be so positively impacted by this little 5 year old, then maybe we all have something to learn from her. If we’re open to it...so just smile and say hi, just like we do here in South Louisiana. ❤️

  • Lacie Chappuis
    published this page in Resource Blog 2019-08-02 13:06:48 -0400

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