We have officially completed one week of Rett Syndrome Awareness Month and I'll be honest, it's felt like four weeks. Look, I'm not burned out -- yet. It's very well possible that by the time you are reading this I've said, "I'm done" and have stopped posting altogether... Okay, that's not true. Of course, I'm going to continue posting. Look, I'm rambling at this point and I really want to highlight some great posts that came across my Facebook feed this week! LET'S GET TO IT!!!
My favorite posts from around the world
The lights of city hall
Brazil
I saw a similar post last year, so when it popped up again last week, I was super excited! A nonprofit is Brazil called Abre-te shared that the Rio de Janeiro City hall will be lit purple on October 11th for Rett Syndrome Awareness Month. What a neat way to 'shed light' on the disability... 🥲Please forgive my jokes.
After seeing this post I began to think about how great of a campaign this can be year after year. Once this is an established tradition, there's no reason for a local government, business, or even a sports organization to stop doing it; this provides nothing but positive press to these groups while at the same time 'shining a light' on the disability... Okay, I'll stop.
Preparing kits for an awareness run
Portugal
At this point, all of us Rett folks are familiar with physical endurance activities to help bring awareness to the disability. While personally, I have not participated in one before, they seem like a fantastic way to bring awareness to a cause.
ANPAR, which is the national Rett syndrome organization in Portugal, shared these pictures of community members preparing kits for their Rett syndrome awareness walk. Firstly, always important to have some sick swag for the people participating in your event - kudos, ANPAR. And secondly, what a great way to involve more people in the event! Let's be real, not everyone wants or is able to participate in a physical challenge to help bring awareness, but those same people probably would love to support the event. Preparing supplies like this could be its own event even.
Recognizing loved ones
Europe
I've seen a lot of posts this past week sharing Rett experiences including the struggles and successes of individuals afflicted with it. However, I saw 2 that focused on the relationships Rett impacts. I loved this one from Rett Syndrome Europe because it shows the closeness these sisters have. Rett is all-encompassing, but it doesn't need to limit relationships. Dr. Andreas Rett who first identified the disorder in 1955 said, "They feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries, and one of them is the girls’ eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls understand everything, but they can do nothing with the information.”
Those of us who are lucky enough to spend so much time around these incredible individuals know that this is true. Even though my Zoey has never verbally said that she loves me, her eyes have and that's all I've needed.
A shared understanding
Poland
A highlight for me when I'm able to meet other Rett families is to see how my daughter and the other Rett individual connect with each other. Just as with neurotypical individuals, things sometimes don't click, but when they do, it's something amazing.
These 2 girls from Poland both have Rett syndrome and are of similar age. While both are nonverbal, you can tell that something special is being communicated. Just as I shared in the previous post, individuals with Rett can communicate so much with their eyes. And it sure seems these two girls are doing just that.
Looking back and grateful for hope
United States
I don't think I've written down my perspective of our Rett syndrome diagnosis journey - at least I can't remember ever writing it down. I've shared it many times vocally but never written it down. While Candice's experience feels familiar, what I enjoyed most about her Facebook post was her optimism. She's further along in her journey than Sarah and I are, but I see some commonalities. Candice shares that Rett has forced her to see things from a different perspective. And this is a bad perspective, just different.
Occasionally we can get caught up on what was lost because of Rett syndrome. Yeah, it sucks at times to think about how life could've been if that damn mutation had never occurred, but does that nonexistent path deserve our focus? There are so many things in life that could have been different, but we don't dwell on them; we shouldn't dwell on them.
I recently went back and listened to our podcast episode where Sarah and I discussed our diagnosis story. 3 short years later I can already say the same thing that Candice said - If only I could go back to myself and share what I know now.
The facts of life
United States
I must admit, I've seen a lot of posts like this. All of them are super good and super important to share. Stating the facts of Rett syndrome I think is a great way to introduce people to what it is and how it impacts life. I also love when people share the full picture of what Rett syndrome can be. Often we get in this assuming mode where we don't take the time to inform people of the full experience of Rett syndrome. For example, how often do you say "Our girls with Rett syndrome"? There are boys that deserve to be recognized. What about discussing those who have atypical Rett syndrome? How often have you done that?
I know, I know - we don't want to overload people with information. But I think the best way to give people the 30,000-foot view of the disorder is by sharing how it impacts people differently. I this particular post, they share that they are thankful that Genevieve is seizure-free. This implies that seizures can accompany Rett syndrome without spelling it out word-for-word for the reader; that's great!
Everyone participates!
United States
Little miss Macie is a favorite of mine; I won't deny it. And when I saw that she got dressed up for Rett Syndrome Awareness Month, I immediately saved the post. Mom, Mandy, shared that Macie wore purple a day before October to not only bring awareness but also to celebrate Macie. This is a fabulous perspective that can encourage to continue to bring awareness to Rett syndrome. If we can look at our efforts more as a celebration of the individuals and their triumphs over challenges, maybe it will become less of a chore and more of a gift.
Sidenote: Mandy and her family put together a great cornhole fundraiser each year. Sarah and I were lucky enough to meet her in November 2021. You can listen to the podcast by clicking here.
An all-too-familiar journey
South Africa
Mine and Sarah's favorite part of creating the pRETTy happy. podcast was realizing that our diagnosis experience wasn't unique. All families in the Rett syndrome community have similar journeys and for the two of us, it brings us comfort. In this video, Abby's mother shares their diagnosis experience. It's simple, it's straightforward, and my favorite part - I see our family in it.
We need more posts like this beyond Rett Syndrome Awareness Month because the current media that first pops up when you search Rett syndrome does not provide this level of comfort.
Awareness is growing
And that does it for week 1. Seriously, I have enjoyed seeing everyone's posts. As a community, we have been able to create so much awareness across different genres and mediums. And it's doing a lot of good!
I get emails occasionally from Google that share with me how certain topics are trending on their website. Take a look at this graphic.
This is incredible! Because of all of our efforts, searches for Rett syndrome are up 4 times what they normally are! And this isn't just in the United States or other English-speaking countries. If you look under the title, it says this is worldwide. Amazing. 🥰
Keep on posting, everyone. Let's keep these search trends up for the entire month of October.
Comment below with your favorite post for Rett Syndrome Awareness Month; I'm excited to see what else is out there!