Taking time to look through the first week's worth of posts about Rett Syndrome Awareness Month was so much fun! Immediately following week 1, I began looking for my favorite posts for week 2. And for week 2, I decided to share some of my favorite posts from Instagram! I'll be honest, Instagram is one of my favorite platforms to connect with the Rett syndrome community. For me, the fact that it's so visual helps me better connect with others. So, this assignment was super easy for me because I spend way more time on Instagram than I should.
Let's take a look around the world!
Rett and sports DO go together
Canada
That's right, folks - Ema is doing hockey! And she's receiving amazing support not only from her family but from local advocacy groups as well. It's awesome to see Ema have such an amazing support system that encourages her to accomplish what she wants.
When I first received my daughter's diagnosis, I searched 'rett syndrome' on Google and found a lot of devastating information. Look, Rett syndrome can prevent someone from doing a lot. But with a little creativity, anything is possible!
I wonder what other sports Rett individuals are doing... 🤔 [ISO Rett individual killing it at basketball]
Education is for everyone...right?
United States
You'd think education would be simple. Unfortunately, it's not - especially when 'special' is in front of it. And let me be clear, education is often hard because of ignorance and bureaucracy. Sarah and I can relate all too well to this post because we've experienced similar things, just these 3 to name a few:
New school starts soon and the school is just now beginning to prepare for your child even though the IEP was agreed upon months ago!
Constantly having to repeat discussions with school and district administrators to clarify expectations.
Rett-specific training of staff appears to be the least of the school's priorities.
Also, it always seems like the information about Rett the staff has access to is about a decade old.
It's insane! Providing a quality education for someone should not be this difficult. Period.
A good night's sleep is only a dream
Spain
Rett syndrome can cause issues with sleep. Often the most frustrating part is that Rett can cause the afflicted individual to experience levels of tiredness throughout the day, which then requires them to take a nap.
And that's where the problems begin...😖
Because when they take a nap, they're not as tired at night. And when they're not as tired at night, they don't sleep very long. And when they don't sleep very long, they wake their parents and caregivers up. And when they wake their parents and caregivers up before we can achieve REM sleep, we lose our ever-loving minds! 😠😤😠😤😠🤯💀
It's not their fault - it's Rett syndrome. But once again, this is yet another example of how Rett permeates throughout our lives. María does a great job in this post highlighting these difficulties. So thanks for making me feel seen in this, María!
Remembering lost loved ones
Canada
Nobody wants to talk about death. But with Rett syndrome, it's a reality we have to live with. That's just it though, we have to LIVE. To sit in sorrow means we've let Rett win.
Colleen English wrote a great blog post called The Cure for Rett Syndrome. It's a wonderful bit of writing that you should definitely read; the summary is that we cure Rett syndrome when we live life. It's not letting Rett stop you from going on that vacation you've wanted to experience as a family, or taking time to connect with others who may be feeling weighed down.
When I first read this Instagram post, I wondered if it was difficult for Melanie (@rockymtn_rettmama) to write out each name. To be honest, I still struggle emotionally when it comes to talking about death because of Rett; it hits *too* close to home. I admire Melanie's creativity in discussing this topic in such a sensitive way. The truth is we should remember those who have passed so that we can continue to strive towards a cure - be that living life or an actual medical cure.
What a dress!
Russia
I must admit, the main reason I saved this post is this dress. Vikulya wears it perfectly!
I then took the time to read the post and the positivity was contagious. Vera, who is Vikulya's mother, talks about how her daughter is strong. "You teach us not to give up under any circumstances...to live with hope for a bright future and appreciate everything that fate gives us..."
I struggle to put into words what my daughter has taught me as she's navigated life with Rett. I think I have them now...
Have music, will dance
Sweden
We can all agree that music just makes life better. And if you can experience a live performance even better! Tilda won a contest for a photo shoot over the summer and she was recently able to have pictures taken of her dancing with the famous Swedish comedian, Sean Banan. This just looks like a great time! 😋
I attended a concert at the beginning of the month. This was my first one in nearly a decade. I walked away from that experience feeling reinvigorated and excited. I shared this with another Rett parent and they encouraged me to find experiences to take my daughter to as well. Her reasoning was that if I was feeling so great after a concert, imagine how great Zoey will feel being able to set aside Rett syndrome for an hour or so.
Another great week
I've just got to say thank you to everyone who posted this week. Being able to read about your experiences, your stories, successes, etc. has been so uplifting and exciting. Often I get bogged down in the drama of social media because of news and politics, but whenever Rett syndrome shows up on my feeds, it makes me feel seen.
Do you have a favorite post on Instagram from this past week? Share it below in the comments!
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