Amelia’s Story – 2020 Update

As many of you know, Amelia has a very rare genetic condition called 2q23.1 microdeletion syndrome or MAND. If you’d like to follow her journey from the beginning, you can find our first post on that here:

We also post updates on Amelia and the rest of the family’s shenanigans across social media daily, which you can access via the links at the top of the page, if you’d like to keep up with how/what she’s doing. We’re working on getting back into blogging and vlogging regularly, but the reality is, to do those things well, you have to be super dedicated to them and we just have too many irons in the fire right now to be as consistent as we’d like to be. So, we’re trying, but I think it will be a while yet. Until then, social media is the best way to keep up with or to contact us.

So…Amelia… 2019 was such a great year for her! We managed to spend another year largely outside of all the hospital nonsense we’d come to call every day life when she was younger. That’s a pretty impressive accomplishment for her, and we’re incredibly thankful to be able to live a mostly normal life again.

Last year for the awareness day meet-up, we took Amelia into the Museum of Industry in Baltimore, Maryland kicking and screaming because she had decided as soon as she laid eyes on the place that there were no toys in there. That’s the same way, exactly, that we took her into the art museum in Baltimore the year before. This has been an issue for most of her existence. She likes to fixate on things. And toys, or lack thereof, have always been a good way to set her off. When she’s lost herself like that, it’s like a nasty virus. None of us have found a way to help her get herself back under control. You just have to let her wear herself out. It’s horribly embarrassing, but it is what it is.

We haven’t had that issue in a while. It’s like so many of her other crazy quirks that have gone by the wayside. They just kind of…go away. I didn’t really notice it leave, it just left and I didn’t notice it’s absence until I took time to reflect. Good riddance though! I definitely don’t miss those meltdowns!

Amelia has also, over the past year, achieved actual sleep. Like, real, actual rest. It’s every bit as amazing as I’d imagined it would be! When we moved back home from Harrisburg last fall, the focus was to get Felicity to sleep through the night as she was still waking every couple of hours to nurse like a newborn (she was nearly a year and a half). Between her sleep issues and Amelia’s, I’d become fully zombified.

They use sleep deprivation as a means of torture for a reason. It’s so beyond miserable, I just can’t put it into words. If you had to deal with me during any of that, during any of the past 8 years, actually, I’m sorry. I really wasn’t fully human. I was just going through the motions, and I’d hit a point where I just couldn’t go on anymore. So, when we came home, I brought everything else to an abrupt halt (as much so as I could with 6 kids to chase around anyway) to focus on SLEEP. And guess what?? We were actually successful! Felicity sleeps soundly all night now and as long as Amelia is sharing a room with someone, she sleeps all night most nights now too. Thank God! 8 full years without a decent night’s sleep….I still can’t believe I survived it and I’m so ridiculously thankful to be past that, hopefully for good.

So, what does that mean? Well, I’ve hypothesized many times over the years, what a well-rested Amelia might look like. Calmer. Quieter. More focused. Slower to anger and easier to appease. Yep. Yep. Yep. All of those things! She’s like a totally different human. I’ve had folks tell me how mature she’s become. It’s sleep, y’all! I figured that was the key but had done everything that could be done to help make that happen for her and it just wasn’t happening. I guess she just needed time.

Amelia turned 8 years old in November. For a homeschooled child, here in the great state of Pennsylvania, 8-years-old is go time. You’re welcomed to start schooling whenever you’d like, but you need to actually report for them the year they turn 8. Until recently, we’ve worked primarily on life skills because she was so far behind on some very basic things. Speech specifically, still needs work, a lot of work, but she’s able to be understood relatively often and has developed an attention span long enough that I can sit with her for, the better part of an hour now, and work with her. She still learns mostly through osmosis, but she’s working hard on her literacy skills now too. It’s slow going, but very exciting!

That’s pretty much it for the year. Amelia has made some seriously HUGE strides but still has a long ways to go. She’s on her own path. Slow and steady is the name of the game. And that’s ok. She seems to be moving only forwardly now so, we’ll take it. I hear puberty likes to stir up this calmness we’ve found and she’s already starting to show signs of that, but I’m hopeful that we’ll make it through that ok too. Hope. Hope. Hope.

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