Happy Birthday, Baby

Dear Jaidon,

Before we came home and got the mail this evening, Simon and I were feeling kind of sad. Simon had just finished a really long day of school, and then had a long session of tricky speech therapy. He was really tired and grumpy from too much work, and his allergies were making him feel yucky, too. I was sad because Simon was sad. I sometimes wish that I could make things easier for Simon, so he had more time to play and just be a kid and had less work and therapy to do.

Then we came home and got the mail out of the mailbox. Right away, Simon noticed the really cool giant fish envelope and wanted to open it. (Simon thinks all the cool mail is for him right now, since his birthday is coming. It turns out he is right!) As soon as we opened it, all the gift cards came pouring out and we were both so surprised. I found your note and we read it together. We were so surprised by your gift, and we forgot all about being sad.

The letter reads: Dear Simon, For my birthday I wanted to do something special, so I wanted to collect gift cards for Tigger. I thought I could start you off with $370! I was thinking you could buy maybe a bed, a leash, food, and treats. I would also like to give you and Olivia the American Express and Visa cards to buy something fun that doesn't have to be a toy for the dog. I really enjoyed doing this and I think you are lucky because you get to bring Tigger to school. I wish I could bring Tod! Your Friend, Jaidon (Jaidon just turned 9 years old)

I think that, when you are having a bad day, the best thing in the entire world is to remember that you have friends that care about you.  It is even better to know that your friend is such an amazing person, that for his very own birthday he would choose not to get presents for himself, but to find a way to do something incredibly nice for another person. I think that a person that does something so very generous, and so very selfless, is actually something better than just a friend -- they are a hero.

So, Jaidon Smith, I want you to know that you are an amazing, incredible, super, awesome, one-of-a-kind, super hero. You saved our day, and I am writing this letter to you on our blog so that your act of kindness can save the day of everyone that reads about it from now on.

Thank you so much for being your (super hero) awesome self. We love you!

The Hatchers (Laura, Brian, Olivia, Simon and TIGGER!)

P.S. To Jaidons amazing, incredible, super, awesome, one-of-a-kind, super hero parents: I can only imagine how proud you must be. Thank you for all you do, and for teaching your kids to be the kind of people that will change this world for the better, one incredible selfless act of kindness at a time. You guys are an inspiration.

Help Me Help You Help Me.

Last week, after recognizing an incredible lack of patient education upon epilepsy diagnosis, I resolved to do something about it. Knowing from experience that this sort of issue is best addressed by foundations already involved in the area of need (since they generally have education as a part of their mission, and they usually have some resources/connections already in place), I contacted our local branch of the Epilepsy Foundation. When I called and expressed my concerns, they seemed open and invited me in to discuss the issue.

I just got back from that meeting. I can't say I've ever had a meeting quite go the way that this one did. In retrospect, I actually think the meeting went backwards. Usually, as a designer, I'm in the position of being approached by the client, and then for the introductory meeting I am invited in to present my portfolio. I (try to) impress them with my work, they tell me about their organization and their communication needs, and I then tell them how we are going to best address them. Conversely, in this case, I was the one that called the organization (out of the blue) and I told them what their needs were. The person I spoke to on the phone seemed to agree with me about those needs; but today in a meeting with multiple individuals (some whose job is outreach and patient education) they were understandably less enthusiastic to hear that I felt they were doing a less than stellar job.

There were a lot of explanations, justifications, and attempts to show me that they had suitable patient education materials and were doing the best they possibly could to get them into the hands of the people that needed them. I was told that they weren't the problem (the doctors are), that they didn't need better materials (they had plenty), and that they also had many resources to provide (when people called them).

Some of what they said made sense (I completely get that neurologists can be a little tough to talk to... and it is notoriously hard to get and sustain the attention of busy medical professionals), but a lot didn't (yes they had lots of materials; but they weren't effective, and waiting for people to find them to call them to know ask for information is exactly the problem in the first place!). Fortunately (for my case), I'd taken my time and done my research on the areas of concern I was raising -- because I was well informed I wasn't easy to dismiss and our conversation became fairly in-depth.

Eventually, it was conceded that the only place they actually knew they had info for patients available was in an Epileptologist's office. Not in any neurologists offices, not in any pediatrician's offices, not in hospitals, or clinics, or any of the places where people are most often diagnosed with epilepsy. (By the time you are referred to see an Epileptologist you are already aware of what you need to be doing and are getting education). We could all agree that this was a problem. They are also not currently able to follow up to see if the doctors that they are trying to reach via email blasts are connecting their services to their patients, another significant problem.

Gradually, I was making my case and we were starting to be on the same page -- but they still didn't seem to be ready to do anything more about it. The consensus seemed to be that they were doing all they could already, and the real problem was outside of their control. Myself, I was getting frustrated and felt like I was talking in circles. I was worried I was getting nowhere fast.

Finally, I brought out some of the samples of my own work that I had with me. I'd brought them "just in case" I needed to explain something, and because, as a designer, I feel a little naked without my work with me. I hadn't planned to show it because I wasn't there to get them to hire me; and I was afraid that if I started off our meeting by showing them patient education projects I'd worked on that had been effective it would seem far too self-serving -- which was not what this meeting was about (at all).

Stupid me.

By the time I pulled out my work the table was already filled with examples of their current materials. As I laid my projects over top I was even surprised by how much my work stood out from theirs, begging to be picked up and read. As I laid it out I noticed their eyes growing wide. They immediately dove into the work. "Wow" I heard one person mutter under their breath.

At that moment, the entire tone of the meeting changed. No longer was I just another raving lunatic parent advocate, I was someone with skills that knew what she was talking about! Suddenly, they decided that their current brochure might actually be ready for a redesign.. would I be willing to talk to the advisory board to tell my story... they would love it if I would consider attending conferences, and maybe being on their board...?

O...M...G... I can't decide weather to laugh or cry right now, but at least I feel like I got somewhere (even if I don't know where that is yet). I have a feeling this is going to be a loooooong road but that's okay. Have portfolio, will travel.

One of their current brochures (left) vs. a Laura-designed patient education brochure (right). Which one would you rather read? I'm guessing it is NOT the one with the scary looking purple doctor... just sayin'

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.