It was a good day!

I read an article recently, written by another mom of a special needs child. In the article she wrote about the isolation of this life and it's so very true. I could write the exact some words here and they'd all be true. Do I have it worse than anyone else? No, definitely not. Do I want you to feel sorry for me? No, but sometimes I want to pout in self-pity for the hardness that Rett brings to our lives. Then as soon as I put the period behind that sentence I feel guilty for having written it. There's also a lot of guilt in this life. I guilt myself for not being enough or doing enough, and then for doing too much. For the things the other girls don't get to do, for the things we can't add to the list.

I've read articles where parents said "If the cure was right here, I wouldn't give it to my child. It would change them and they're perfect the way they are." Every time I shake my head and scream "NO!" inside. I want to judge them and think that they're some type of strange misery-seeking individual. I get it though, kind of, but I'd still give her the drug. No question. I read yesterday about the licence deal made between Neuren Pharmaceuticals and ACADIA Pharmaceuticals. Neuren accepted a $10 million dollar deal allowing ACADIA to develop and commercialize the drug trofinetide. The article says that a phase-three trial will happen next year. You can read more here. My excitement is through the roof that progress is being made. Every deal and every company that wants in, builds my hope that this is a good drug that's going to give our girls relief and progress and maybe even cure this thing.

Today was our annual Step Up Half Marathon, Relays & 5k. It's a lot of work to prepare and put on but here I am at the end of the day and I survived. My goal is to raise $5,000 each year. This was our 6th year and we haven't made it to $5,000 yet but maybe next year. We usually donate around $4,000 to Rettland Foundation. Rettland helps those families participating in trials and sends care packages to girls who are in the hospital and to families who are in the trenches. People ask me why I don't donate the funds directly to the trials. I don't because the trials can't happen without these families being supported enough and strong enough to go and be a part. This life is lonely and exhausting and some days too much...way too damn much! So if I can be a little bit of help so that a few families feel like they're not alone, like they have someone out there taking time and energy (maybe even the last bit they have) to give them support, then it's worth it. Also, Rettland is run by an amazing rett-mom who does a darn good job supporting families! (KEEP IT UP COLLEEN!)

I sit here at the end of the day, looking at how my friends and our family came out of the woodwork to help. We had Grandma, aunts, cousins, sisters and some of my few dearest friends who came to work water stations, direct runners, help Ellie walk the 5k, and even sort out the madness of my spreadsheet! I am humbled by the people who come alongside and lift me up in my weakness. God has blessed me beyond measure in this small handful of people.

I don't get emotional about very many things but the race always gets me. Introducing our girl to all 150 runners and telling them a little about her life and rett makes me teary. Perfect strangers coming up to tell me that they're therapists or teachers or doctors is always a highlight of this day. I talked with a girl today who's in medical school. Ellie and I went and spoke to her pre-med class at BVU about Rett a few years ago. She's not exactly sure what she intends to do yet but as she walked away today, I told her the same thing I do to every class we've talked to. "Go cure this thing!" I say it because I really do believe that one of them will!

So today, I didn't feel alone, isolated or in over my head. (Well except for that spreadsheet stuff!) Thank you to all of you that made today possible. Thank you for caring about me and about Ellie.

It was a good day.
Angie

Ellie. No. 11.

"Sale Barn. Grandma. Cousins. Me. No. 11. Sale Barn."

This is typical "Ellie talk." This was her just a few days ago; a combination of verbal words and device words. This day, she was telling us that soon she won't be 11 anymore. (Her birthday is in June but since her sisters birthdays are January, March and April, she's anticipating her own.) She can't verbally say 12 but she can say "No. 11" which is pretty clear. She was communicating (like she has many times over the past month) that she intends to spend her birthday at the sale-barn. Except she doesn't mean that she just wants us to go there. She really wants to have a sale-barn birthday party with Grandma and Grandpa and all the cousins. So yes, she still loves cows and the sale-barn is her all-time favorite place! 

She upgraded her Eco2 to an Accent1400 a few months back. We kept her same LAMP word system, just a new computer that's a little lighter, a little faster and now red. (Ellie's choice.)  She tends to sandwich her message in between "cow talk" so you just have to read between the lines sometimes. She really isn't just randomly hitting buttons. The best way to know this is to spend an hour sitting with her and her device .You'll quickly see that her communication is purposeful and quite intentional. In spite of many "experts" telling me Ellie should use phrase-based communication, we're very happy with what she's doing with LAMP. She's gaining new vocabulary constantly. I'm always using the search button to figure out where the word was that she just said. I think she enjoys saying things that Mom doesn't know how to find. We switched up how she does vocabulary words at school so that she isn't having to learn a word/definition/sentence that isn't in her device. I just decided that really isn't very purposeful if she cannot verbally say it or write it or find it in her device. Let's give her a synonym that IS in her device. SO, since changing that we've got all kinds of new words popping up! It's great! "Disagree" is a favorite lately, though she did add "agree" this week. Of course being a pre-teen, she'd rather point out that she disagrees! 

She has grown enormously! She's presently just under 100lbs. and about a foot shorter than me. It's getting more and more challenging to "make her" do things that she doesn't want to do! (Brushing teeth, shaving, etc) 

She still likes to go to bed by 8pm and falls asleep almost instantly. Of course, mornings are still her favorite. She gets up by 5 most mornings and sometimes much, much earlier. My rule is she has to stay in bed until 5am, but it just doesn't always happen. Praise God she can grab her ipad and get onto youtube to listen to math videos or read alouds. Those teachers and grandmas deserve some kind of award for taking the time to record and upload all those! Seriously life-saving and sleep-giving to me!! Her new next-best youtube videos are people eating and videos of food noises. It's strange really...not so much that it interests Ellie (she'll watch goats or cows chew their cud for hours!) It's strange to me that people video themselves eating and making food noises and post them on the internet. These we could all do without!

Ellie still loves school (She's presently in the 3rd grade) and Mrs. T who has been her aide since kindergarten. The bond they have is a saving grace for me. It's not easy sending your child to school, let alone a child who can't tell you about their day very effectively, and a child that has to have help in the bathroom. So, having someone that she trusts and that I trust is a mercy from God. I don't know what we'd do otherwise. We have retained Ellie a couple times to give her more time to work on communication and being able to demonstrate her learning. We've been lucky to be able to move her at a pace that's best for her! 

Ellie developed a scoliosis curve last year that we're watching for changes. She gets another x-ray this month to see if it's changed. Our prayer is that it hasn't changed and that we won't have to have any intervention. 

Ellie's greatest frustrations are people who clear their throats, hiccup or burp. She's hardest on her family, as usual. Little Esther will run to me and whisper in my ear that she has the hiccups, we then rush her to the other end of the house than Ellie. She does have super-sonic hearing though and we rarely escape her wrath when it comes to the hiccups. 

Generally Ellie is a happy girl who loves us all. She frequently pulls our heads into herself for kisses or hugs, albeit sometimes kinda roughly! She really doesn't know her own strength! She loves animals and being the boss out in the pen. She's a great goat-tamer!

So that's our long-overdue update! I hope you're all well and blessed. 

~Angie