I don’t want this blog to be a place for venting…BUT…just this one?
For living in the digital age, I cannot get my head around the number of times I’ve had to hand write my daughter’s name, address, birth date, etc. etc. etc. out. For most offices, it’s multiple times giving the same information on various different forms that all go to the SAME PLACE.
Often offices can’t take email attachments and sometimes don’t even have digital copies of their forms to send me.
Yesterday I spent an hour making this for Ava’s records:
I guess there are security issues to worry about and some of you probably know reasons it’s a bad idea, but I really wish there was a medical ID card I could just swipe for each office and they could just have all this info instead of me spending 45 minutes each time we see a new specialist or start a new therapy, filling out my middle initial and Ava’s birth weight by hand 3 times on faded, photocopied forms.
Yes, I realize there are a lot of practical reasons things are like this, and I am guessing a lot of medical professionals and therapists find it just as much a nuisance as I do. Maybe when Ava is 10 we will be able to get rid of some of these paper files.
If any of you like building apps and are so inclined…if someone could make a really good app for managing a child’s medical care, I would be ever so grateful! I can’t do much about the paperwork everyone else gives me, but it would be nice to be able to digitally manage things better on the stuff I can choose to instead of having a therapy & medical notebook that I almost always forget to take with me to appointments. So many parents out there have to spend hours dealing with things like this instead of playing with their kids. Or doing dishes and laundry, which is what I’ll be doing when this next form is done. Or…just kidding. Sounds like the kids are up from nap time… 🙂
Not sure I was ready for an international awareness day to come so soon after Ava’s diagnosis, but this past weekend came anyway.
What I didn’t expect was to be showered with hashtags of encouragement from so many of you. I literally got tears in my eyes pretty much every time I saw a new picture go up. And for those of you who know me well know that’s something (I’m the girl who didn’t cry at the end of Sense and Sensibility).
The ministry team I work with at Cadre describes encouragement as putting courage in another person…and when I say that you all encouraged us this past weekend, that’s how I really felt about it. That you were putting courage in us to keep getting up every day and wading through all of this. Thanks for helping to assure us that we’re loved and that you guys are fighting for our family and for Ava.
Elijah is almost 3, and I think most kids this age probably say a lot of funny things. But he’s been on a roll this week, and it really has been good comic relief for us. A few highlights:
Monday, stalling before bath time:
“Elijah, you can either choose to get in the bath tub right now or take a time out.”
Softly touching my shirt: “Mommy, your sweater is really pretty.”
Wednesday, shouting from his bedroom upon waking up:
“Mom! Dad! The sun is up! I need to poop on the potty so I can go to the play area at Ikea!”
Wednesday evening, talking with Papa:
“Am I your friend, Elijah?”
“No, but don’t take it too hard, Papa.”
Thursday, in the car:
—I turn on music—
“No Mommy! Not music! I want the talking!”
“You want talk radio?”
“Yeah! Not music!”
—Happily turn on NPR news—
Thursday, at bedtime:
“Mommy, are there monsters in my room?”
“No, no monsters.”
“Oh, yeah, look Mommy, Jesus keeps away the monsters?”
“Oh ok. He just keeps them in his office.”
Elijah was trying to use the potty and I went to leave the bathroom.
“Stay with me Mommy! Like the song!”
“Like…the Sam Smith song?”
“Yes! Stay here with me. And can we listen to it?”
—Proceeds to sing “Stay With Me,” gazing into my eyes sweetly, while trying to poop.—
I feel like we’ve been thrown into this new world that I am still getting to know and still not really happy to be part of… a world where this weekend is not about red hearts and Valentines Day, but blue wings and International Angelman Day.
The great thing about getting a diagnosis right before IAD is that there is a lot of activity in the Angelman community right now and it is also giving us all ways to sort of get involved right away.
To be honest…I’m not personally ready yet to be real excited about wearing blue bands and posting about awareness of this thing I hadn’t heard of a month ago which has now changed our lives in ways I am not very happy about. But seeing you guys rally around the cause and around us through this is helping me to get there. So for that I say thanks, and please do keep it up, even if I don’t do a lot of personal hashtagging this weekend. It really is very encouraging to us.
That said…I will muster a little enthusiasm in honor of Ava & for those of you who want to know how to be involved! 🙂 Here are ways you participate in International Angelman Day and the walk coming up this May. And thanks for the hashtags, too!
|15 Ways to Celebrate the 15th|
It was a day or two after Ava’s diagnosis and I was sitting in the greenroom of my job at the Laugh Floor talking with one of the other actors, Heather, about the news we just received. As I shared, I stated how lucky I am to be able to come to a job where I can put aside my worries for a couple of hours and laugh. We laugh a lot at work. (I love my job!) In my sharing, I told Heather how I wished Laura had a job where she could go and laugh, too. Heather understood what I meant.