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