Arts in Action

One of my very favorite essays on design is called "How Good is Good" by prominent New York-based graphic designer, Stephan Sagmeister. In the essay, Sagmeister talks about the fact that he loves what he does and he is doing good work, which is great until he finds that he wants to do something more than just make things that look good. He also wants to do good. To that end, he attempts to apply his creative problem-solving skills to big world problems (like disaster relief). However, he quickly finds that his ideas are shot down (not something he is used to) because he doesn't understand the problems well enough -- he is too far removed from the situations he is trying to impact to have the correct perspective. Too far, that is, until 9/11. Suddenly the big world problem is on his doorstep, affecting his community, and he understands it all too well.

In the midst of that tragedy Sagmeister wishes he had the skill to do something direct to help those around him. He wishes he was a rescue worker, a paramedic, or a firefighter. He feels helpless because he knows that even if he went down to ground zero he wouldn't be able to do much other than get in the way. Fortunately, he eventually comes to realize that he can do something -- he can do good by doing what he is good at. He uses his prodigious skills as a designer to create the logo, T-shirts, advertising, and album cover for the Concert for New York that raised $20 million in funds for firefighters and policemen.

The reason I love this essay is because it reflects what I try to do in my own practice as a designer. I try to do good work, but I also choose to do that work for causes I believe in (like education, the arts, and health care). The message that we can make an impact by doing what we love, what we are good at, is one that I've cherished -- but I never felt that it applied to the problems I have been facing in my own life. When it comes to things with Simon I always try to be proactive, but I also find that there are plenty of times when I feel helpless.  I sometimes think I can't make a big enough difference because I am not a neurologist, or a therapist, or a teacher. I want to fix a problem I fear I have no control over.

So, when the art teacher at Ridgely Middle School contact me because her students had decided to make Simon and Tigger the beneficiary for their "Arts in Action" event, it seemed like some sort of cosmic twist of fate (or maybe the hand of a higher power trying to remind me of my own convictions). One of the Ridgely students is Simon's Kindergarten teacher's daughter, Kayla. Kayla knew about Simon from her mom and, when it was time to make suggestions about the focus for "Arts in Action" (and where the proceeds from the silent auction of the student artwork should go), she suggested Simon's needs and shared this blog with her teacher and classmates. They agreed, and last Wednesday we attended this great event as a family (and Simon attended as the rock star he is).

It was a great night that celebrated art in many forms (there was a play, a talent show, lots of student art and crafts to participate in). The turn out was wonderful and there was a huge showing of support from Simon's school. I'd created a slide show about Simon, Tigger, and epilepsy awareness, and the students made posters as well. Lots of people stopped to talk to me, some to ask questions or share their personal stories of a loved one affected by issues they had in common with Simon, and some people just said they were happy to meet us and were keeping us on their prayer lists.

In addition to being an incredible showing of community love for our little guy; the event got me thinking that maybe I'm not completely helpless when it comes to some of the problems we've encountered on our journey with Simon. That maybe, by doing what I am good at, I can make an impact on some of the big world problem on my very own doorstep. So, after a bit of research (okay, a lot of research), I determined that one of the big problems I see is a lack of patient education during epilepsy diagnosis. Not once have we been given so much as a URL by our doctors to help us find resources and/or support -- and, sadly, I found that my experience is far from unique. Almost everyone I spoke to about their experience said that when they were diagnosed with epilepsy they went home with little more than a prescription and a "good luck, let me know if you have any more seizures, see you in a few months" from their doctor.

Now, THIS is something I can do something about. I design patient education brochures (very nice ones, I might add), all the time for conditions as diverse as AIDS, Insomnia, and Hearing Loss! I could easily create something for Epilepsy... I just need a doctor to help with the writing, grant money to fund the project, and a way to find visibility to get it into the hands of doctors and then into the hands of patients. In my experience this happens by working with regional cause-focused foundations and the local heath departments. So.. earlier this week I called our local chapter of the Epilepsy Foundation. I told them what I felt needed to happen and why. And you know what, THEY AGREED WITH ME. Tuesday I have a meeting with several board members and the executive director. I intend to make a very strong case.

I'll let you know what happens. But, even if I get shot down, I know I'm in good company (like my buddy Stephan) and I also know that I am in the right. In this case, there is action that needs to be taken and it is art that is going to make it happen. Thanks to the students at Ridgely Middle School, I will keep trying and working and bugging people until I get accessible, resourceful, imperative patient education into the hands of those that need it.

Thank you so much for reminding me of the potential power for good I can have by doing what I am good at.

The theme of the night was "Pop Art!"

Some of the amazing sculptures created by the students for auction.

Simon with his super-awesome Kindergarten teacher and her super-awesome daughter, Kayla, who presented her classmates with the idea of using Art Action night to help Simon after she heard about him from her Mom. I know her mom is VERY proud of her, and I am too. What an amazing, kind girl!

Simon and I with Mrs. N, his fantastic aid from school (I don't know what we would do without her!)

Simon got into the action with his favorite creative pursuit, painting.

For some reason, they thought that it would be a good idea to give Simon the microphone. Rather than graciously thank his supporters, he took the opportunity to belt out a (rather long) tune in their honor. Complete with a big finish and a dramatic bow at the end. Thank goodness he's cute. (They even gave him an encore -- I was looking for a gong...)

Surviving Status

It happened again, Simon's third status epilepticus seizure in 18 months. It lasted for three hours, starting with only an increased heart rate and eye deviation, but ending as a full tonic-clonic seizure.

Though, by all accounts it was a major episode, a lot went right this time. That's the benefit of experience, I suppose. Because of the pulse oximeter Simon wears to bed, we had an alert system in place and caught the episode right away. Because we have been through this before, we had a plan in place and thereby avoided the chaos and confusion of ambulances and multiple hospitals by driving ourselves. Because we were able to go directly to our "home" hospital where pretty much all of Simon's doctors and care is centered, they had a record of what medications had worked in the past and were able to follow it carefully, without overloading him with meds and putting him into a coma. Because of this, we avoided the intensive care unit and, just 33 hours later, we are home again.

Simon (who is officially the toughest kid I've ever known) miraculously came through it okay. He's still loopy from the meds and very tired and irritable, but he is talking to us and seems otherwise fine. We have follow up appointments set up, more to discuss with our doctors, and more to worry about (for example, we have no idea why he had this seizure)... but for now, I think, a picture is worth a thousand words and I just want to focus on our miracle. Simon survived, he is my miracle, and for now I can't be anything but grateful.

From beginning to ending, here is how we survived status together, again.

Almost as soon as we got to the hospital, Simon's seizure went from a partial to compex episode and was full on tonic-clonic. The very professional staff at Hopkins delivered lots of meds and oxygen, a little at a time. We stayed by him and were made to feel welcome throughout the entire episode. (The Neurologist wanted to know what area of the medical field we were in. He was a little confused when we said graphic design).

Simon stayed in the intermediate care ward while they decided whether to move us to the PICU or a floor room. We waited anxiously for the medicine to take effect and for the seizures to stop so we could avoid intensive care. Simon snored. Loudly.

As soon as Simon started to come around, he requested his teletubby video. Just like the very first time he woke from status. I wonder sometimes if he dreams about them.. (they are pretty freaky).

No rest for the weary. After sleeping off the medicine all day, Simon was up all night. To distract him from the wires and IV that were upsetting him, I took him on a very posh wagon tour of our ward.

Finally, a few moments of rest just before dawn.

I knew we were on the mend when all Simon wanted to do was go outside and play. 

Playing cymbals in the hall and your room is a great way to convince the nursing staff that you should be allowed to discharge early.

Finally, our discharge papers arrived. We tried not to run and skip on the way out.

We're really leaving!

Thank you to all the doctors, nurses, and staff at Hopkins for taking care of our baby. Thank you to everyone that visited, prayed, sent positive vibes, texted with me in the middle of the night, sent notes of encouragement over facebook, and continue to support us and our Simon with your love. I can't put into words what that means to us. It helps give us the strength we need to keep going.

You and You My Party

Like any parent, for the past five years I have wanted to find a way to celebrate Simon's birthday to make him feel special. I've always wanted to plan a party at his favorite venue, invite all of his friends, and decorate to fit his craziest little boy whims. I wanted to give him a whole day to call the shots -- my big (little) birthday boy.

But Simon never understood any of this. I'd tell him about his birthday and ask him what he wanted to do; but he couldn't tell me. I'd want to invite his friends, but he didn't understand the concept of friends, or even have much of an interest in other kids. I wanted to fulfill his craziest whims and wishes, but they were unexpressed. So, I'd do my best to be creative; finding ways for him to have fun and feel special. Because foremost, Simon's birthdays have always been a celebration of the most amazing little guy I've ever known.

Nonetheless, for the past five years, I've greeted the day with a twinge of sadness. His lack of birthday anticipation had always highlighted a difference between him and more "typical" kids, which reminded me of his other differences, and I'd find myself gradually slipping into worry and wishing for what could have been had he not had a stroke before his very first birthday.

But this year is different.

This morning, Simon's teacher emailed me asking me when Simon's birthday was -- because he was approaching each of his friends, individually, and inviting them to his birthday party. He'd touch them each to tell them "You and you my party!"

I was out running errands when I got the message. I'm not ashamed to say I started crying right in the middle of the art supply store. Thankfully, it wasn't terribly crowded in the aisle with the glue sticks.

When I told Simon's OT about it this afternoon she started to cry, too. (Thank goodness I had the foresight to switch to waterproof mascara.) I'm blubbering right now just thinking about it. We had what might be the longest conversation I have ever had with Simon about cake (vanilla), icing (purple), decorations (pirate!), presents (pirate legos!), venue (Playzone -- "where Emma's party" -- he actually said that!) AND FRIENDS (my friends! Mrs. McGee!).

My big birthday boy.

La-Z-Ed-U-Ther-Ap-Y

I admit it. I've been a bad mother lately, and I'm having more mommy guilt than usual over the fact that Simon and I haven't managed to finish a homework packet in 2 weeks. I've been told that I'm allowed to "adapt" them, to omit what Simon can't yet do and simplify where needed, but I'm pretty sure we should be handing in something.

Yet, between Simon's stepped-up therapy and my stepped-up work schedule, it has been just a little too much for us both. Simon is pretty tired after school, and a couple evenings a week he has extra therapy sessions outside the home. On nights he is off, we work on left-handed skills by wearing his new cast. After just a little while he's frustrated and "done" with working altogether. I know I should cheerfully push through this, but I've been lacking my usual stamina (since I'm kinda "done," too), and I can't decide if it makes me a worse parent to push, or to pull back.

Either way I am sure I'm doing something wrong.

To compensate, I'm trying to combine things. Tonight was an excellent example. First, we did our casting session. Since Simon is working on identifying money in school we set out some coins and, after identifying the coin he used lefty to put it into the piggy bank (pincer grasps, supination and math!).

For our second session we worked on language and social skills. I brought out a pint of Ben and Jerry's and we practiced asking nicely to take turns with the spoon....hey, wait, that counts as OT too! Lazy mother... or genius!

Okay, fine. Tomorrow we will finish our homework. For tonight, I need more froyo because Simon ate most of it. Please pass the spoon.