The rare disease club

Even though we just got Ava’s diagnosis last month, as early as last July I found myself thinking of Ava as having special needs that were different from most babies. That’s when I realized that the name “special needs child” really was pretty apt. It’s not that I started putting a label on her. It just was. Ava was a child with special needs, even if, at the time, it seemed to be mainly her food allergies and feeding problems. 
I also remember the night in early September when I came home from a mommy group and just cried because I knew something was wrong with Ava. While I am very grateful for my mom friends who have healthy kids, and I keep one foot in that circle because of Elijah, it was then I began finding my usual mommy blogs and conversations less relevant and started listening for people walking roads more like our own.
One of the first parents I began following at that time was a brave single mom whose Eva was just three weeks older than my Ava and was walking through a tough diagnosis of CHARGE syndrome. I remember her celebrating Eva holding her head up without crying and it was around the same time Ava finally did the same thing. Only a parent who’s familiar with low muscle tone (and there are actually a lot of you out there, I’ve now learned) can probably appreciate how great that little milestone feels. 
When we got Ava’s diagnosis, this mom’s words to me were some of the most helpful I received…because from halfway around the world, she understood. 
On Tuesday Eva passed away suddenly. I am so sad about this little girl who I’ve never met. I kind of felt our little ones were peers in a way and I was anticipating them growing through their struggles at the same time. I am brokenhearted for her mum who’s fought so hard and loved this little girl so fully in her 10 months of life. Thank you, Tessa, for sharing your struggles and victories with the rest of us. I’ve learned from you and found courage in your ability to celebrate the little things. This gets to be just one part—and I believe there will be many parts—of Eva’s legacy that lives on. 
Like Angelman Syndrome, CHARGE was a diagnosis I’d not heard of until this past year. I do feel as though I’ve joined a club in which no one really desired membership…and yet so many people step up to help one another. Rare Disease Day 2015 (yes, this is a thing) is this Saturday, February 28th, and stands to support families who deal with a long list of unique syndromes and disorders. 
If you’re interested, you can also check out these T-shirts made by a mom community we’re a part of to support the CHARGE Foundation in Eva’s honor. Thanks to all of you who rally around special needs parents, whether you can fully understand the struggles or not. 

Paperwork

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… 🙂

#thanks

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.

Comic relief

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.”
“I’m not?”
“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?”
“Yes.”
“Oh ok. He just keeps them in his office.”

Today:
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.—

Love in the shade of blue

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
Sign up for the May 16th Angelman Syndrome Foundation Walk in Orlando or Naperville, or you can donate to Team Ava via either walk. Proceeds go to support the Angelman Syndrome Foundation

‪#‎AngelmanDay‬
‪#‎February15‬

A Monstrously Good Time (or, In the Monster World…)

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.

A couple of days later, I got a text from Heather:
Craig- been thinking about you guys!  Remembering that you said you were lucky you got to laugh at work and wished the same for Laura….so…If you guys are interested, I’d love to offer you guys two comps to Explorer’s Club at Mad Cow. It’s fun and silly…No pressure, no worries. Let me know if you’re interested and I’ll book them!”
How awesome is that! So I quickly sent Laura a text to try and figure out a day that we could go out for a date night. Since Laura’s (amazing!) mom was in town and was willing to watch the kids, we settled on the following Saturday to go see The Explorer’s Club at the Mad Cow Theatre. I was pretty excited, but what came next just blew me away.
Tuesday morning, the week of the show, I received another message from Heather:
Craig- your tickets are set. 7:30 curtain on Saturday.
Also- a bunch if us (Monsters) pooled together and collected funds so you and Laura could make a night out if it and do a nice dinner…We’re all thinking of you guys and want to do something to make you smile. 🙂
Would you like a gift certificate to somewhere in particular (we’ve got enough for someplace fancy!)?…Have you ever tried Kres? Amazing steakhouse. Is that something you guys would enjoy?”
We went to Kres Chophouse, and it was amazing! We followed it up with a super fun (and funny!) show at the Mad Cow (which is STILL running and should be seen ifyou are in the Orlando area).
Best of all, we smiled. We laughed. We took a break from the heaviness of the week and simply enjoyed a date out together, thanks to my amazing Monster family.

If you are ever at the Laugh Floor at the Magic Kingdom, just know that those monsters that are making you laugh are also some of the kindest, most generous people that I get to work with. I thank God for my Monster family!


Education

Yesterday I went for an interview with the Conductive Education Center of Orlando because they have a free Youngster program for kids with motor disabilities and we wanted to see if it could help Ava. 
It’s a holistic educational approach that helps kids reach milestones by developing their physical and cognitive ability at the same time. An approach that combines learning with hands-on activity sure sounds like a great idea (18 years of youth ministry is not lost on me).
I got a tour of the classes. Elementary kids with dry-erase boards. Then, 6 middle schoolers, each with an aid, doing an activity together. It stirred me, how different it all looked from the clusters of middle schoolers I’m accustomed to spending time with. If you work with special needs kids, it was probably a normal scene But I don’t…which is nothing to be proud of as someone who’s committed a lot of my life to this age group…and then thinking of my daughter being in there was just overwhelming again. It wasn’t supposed to be this way. These glimpses into the future are hard.
Then I saw a high school class. Similar experience. She explained these students wouldn’t move on to further school, but to a young adult program. 
Cheerful, young aids were everywhere helping kids practice walking. I saw one aid with Down’s syndrome carrying on a hallway conversation. Awesome. Another group of kids on exercise mats working with their aids, together.
Ava’s evaluation was pretty typical of what we’ve done so far with therapists. Observation of her interaction with me, how she handles tummy time, how well she sits, what she does with her arms, etc. Comments on how pretty she is, how sweet.
At the end, the conductor (this is what they call themselves…) told me she thinks they could help Ava this next year with the baby program as she works on her physical milestones. Like me, she sees this as a critical window of time in which we can help Ava’s brain develop and lay the best possible foundation for her to build skills for the future. Not everyone seems to feel this way, and I was really encouraged that we seemed to be on the same page.
Then she told me, gently, that she has worked with some Angelman kids, and that as Ava gets older she wouldn’t be a candidate for a center like this because she won’t have the cognitive ability, the attention span for it or the skills for working in a group that are necessary to participate.
That moment when you’re told your kid won’t be capable enough to attend special needs school…
Oh boy.
Now, before any of you get too judgy on this woman for not daring to dream on Ava’s behalf…the truth is, she was right. She later commented that we don’t know what Ava’s capable of, and I know she sees value in helping her reacher potential. But there are some limitations attached to Angelman that we can’t get around. One of them will be her limited intellect.
This is one of those things that is a big source of grief for me, but it won’t be for Ava. I think most of us want our kids to delight in the things we love, even if it’s just wanting them to be fans of our sports teams. Often it’s bigger things than that, though. I won’t apologize for wishing my daughter could grow up to experience & love learning the way I do, because I would do anything to open that door for her. But it won’t happen…and yet…she will be full of joy.

I may spend the rest of my life in wonder at that.