Friday, October 24, 2008


Addie says "Listen to me." Addie's mom says listen to these kids, take 3 minutes and 25 seconds to watch it a first time to get over anything that might need getting over, if applicable. For me, this was getting past the emotion of seeing so much living proof in 3 minutes of our conviction that as a teenager, an adult, Addie will continue to be the confident, powerful, joyful, contributing member of many communities that she is now. For my 9 year old, she needed to ask me a question after the first viewing. Because the majority of the young adult AAC users in the video use wheelchairs did that mean that Addie would too by that age. No, hon, everybody's different, even when we tend to group by similarities. Once you process your own stuff on first viewing, watch again and listen.

Since I first saw this a few hours ago I have watched it 9 or 10 times. I hear something new every time.

AAC users have something to tell you. Addie has something to tell you.


Friday, October 10, 2008

And Grandma's Mantel Shall Be Graced

I know, I owe a regaling of Marathon Day. You'll find it here soon.

In the meantime, an update of another tale: the school picture saga. I type again, as I did one year ago, with cheeks stiff from tears. And I should not be typing at all because it's nearly 70 degrees out, royal blue sky, brilliant warm sunshine... But it's sort of feels like that inside, too.

Without further ado, here it is (ado will follow, not to worry):

No need for a flotation device this year. Someone might like to tie a rope around my ankle however, and give me a yank or two back down to the planet. Or, could you give me a minute to linger?

I have a habit of commenting that certain pictures are worth a thousand words... and then I go and lay down a thousand more. But if you're reading this, it's likely you're fully aware of that and have your feet up, your coffee cup steaming and full.

This is Addie's smile for me, for her dad, for Cate, for Mrs. Bautista, for Trisha and a few others. Or so I thought. It is the one she hauls out when she feels confident, comfortable, believed in, loved. Truly, it's not for everyone.

I already knew that her aides and her classroom teacher sort of collaborated on picture day. They'd mentioned there was a step stool the kids were to sit on that she wasn't having any of. They sort of shrugged when they told me, as if to say "who knows what kind of picture we'll end up with." There was also hopeful mention of picture retake day. Expectations were not high. I don't think I really had any, in fact.

But on picture day, apparently her team did Addie the great respect of trying, reworking and trying something else. This smile is the smile that someone gets when they aren't deterred by her willful opposition to things. It's the smile one gets when one gives Addie a say and then responds with unwavering faith in her. The smile says "I'm right where I belong and so are you."

So Grandma, clear off the knick knacks and get dusting. There's a hinged double 5x7 frame coming your way, stocked with 2 gorgeous girls. When you look at this frame on your mantel, you'll smell graphite and tempera paints, you'll hear lockers opening and closing, you'll feel the click of a ring binder. And the photos will speak to you in unison - one in a rapid high voice, the other in a synthesized computer-generated voice, "We are contributing members of our own communities called school. Just like you were."

Wednesday, October 1, 2008

sunday Sunday SUNDAY (echo, echo, echo)

The Lakefront Marathon is Sunday, Sunday, Sunday! Just a few days until my husband, my friend, my love, brings it all to the finish line. We were dumbfounded by his strength and perseverance last year when he ran it for the first time (pictured here just beyond the finish line upon seeing his firstborn in tears of pride for his accomplishment), but this year my girls and I have even more reason to shake our heads in amazement at this quiet, steady force that is their dad and my husband.

Michael heard about firstgiving after running last year. This vehicle for fundraising was reason enough to get him to toss on a bib again this year, though he had other reasons of his own. Without much ado, he set up his page to support the Special Friends Foundation - an organization that supports Rubinstein-Taybi Syndrome research, as well as individual families that need assistance with the impact of RTS.

He humbly asked me if I thought a goal of $2,500 was too lofty. We liked the number because we got Addie's diagnosis when she was 2.5 years old - sounded good to me. But once he flipped the switch on his page, within about 48 hours, we got smacked in the face with a stunning reality.

The reality was that our friends and family, friends and family of others affected by RTS and people we don't even know... had apparently just been waiting to be asked.

The immediate and generous response had little movies snapping in my head. Movies of index fingers I know, index fingers I don't know tapping us on the shoulder, firmly holding out bills to us with hearts drawn on them. Among those with cash in hand, there were those without anything in their hands. Those people had hearts drawn on their palms, which framed their mouths as they hollared to all who could hear "Look! Look what's happening here, be a part! Get involved if you can!" In these movies, I'd look at the hearts on the cash, on the hands, confused, awe-struck and then follow the hand, the arm up to the faces. The smile on these known and unknown faces cleared the fog, cancelled the confusion and allowed us to humbly take these hearts, these bills in both hands and put them in the box marked Special Friends. Oh, yes. People are good. They love Michael or they love Addie, or they love someone else with RTS, or they love someone with any struggle. Or they just plain love.

I'm talking about you. You know who you are. We love you, too.

Michael's training has been tapering down now and he is feeling good. He's ready. I think this week that feels like waiting is a little tough on him. All the weather watching and the short runs leave too much thinking time. But he feels ready. It's a heavy load this year, taking all of you with him, all of the families affected by RTS across the finish line. If there's one thing I know without it doubt, it's that he's got the strength to do it.

So far, Michael has raised 4 times his original goal (the site will be active until December). Impossible without you all handing over your hearts, without Tom and the William Starck Jones Foundation's $4,000 match that will be posted on the site soon. The impact this can have on families, on Addie's friends, cannot be counted, cannot be measured. Saying thank you doesn't seem enough.

Think of Addie's number 1 hero Sunday morning. Think of his feet hitting the pavement, of his steady heartbeat, of the sweat he wipes away. Because you will be with him.