Tuesday, April 17, 2012

How Simon Had a Happy 6th Birthday

Last year, when Simon blew out his birthday candles, I made five wishes: for health...For continued progress: physical... cognitive... for happiness, and (most of all), for Simon to always be as loved as he was right then.  Though we have had some health setbacks in recent weeks, and though this year I confess that I made the very same wishes once again, I think I can say with some certainty that those candles more than fulfilled their promise from the year before. Simon's birthday weekend certainly gave us plenty of examples of how far we have come, how blessed we are, and what an amazing little guy we are lucky to call our own.

Though Simon got MANY presents, both he and Olivia know how to appreciate a good box. Simon showed off both a desire for social interaction AND some pretty groovy physical therapy skills by squashing his sister inside the box.
Speaking of presents -- our living room has been turned into a pirate's cove. I'm sure it will get old eventually, but at the moment I don't mind a bit. It seems that these toys are inspiring some great moments of PRETEND play using BOTH hands to help the pirates do important things like walk the plank, and bury the treasure.
To celebrate our big boy turning six, we decided to put together a kid party at our local indoor-bouncy-playground place. Simon requested (surprise!) a pirate theme, and so I created this very sea-worthy cake for the occassion.
I was pretty pleased with my cake -- but I'm afraid it was upstaged by an entire ice cream truck! Simon's school bus driver also owns and operates an icecream truck! He knew it was Simon's birthday so he made a special early season trip to our house to give Simon and some of our neighborhood friends a birthday treat. (Mr. Jobe can also visit your next special occassion if you are in our area -- www.jumpnjeff.com).
Finally it was time for the party at the bounce house! With two classes of friends it is safe to say we more than maxed the place out (thank goodness they didn't have a bouncer! get it! sorry...) Simon and the kids had a BLAST. I tried to get photos but they were all moving so quickly all I got were colorful kid-shaped blurs.
Like I said -- there were more than a few kids... to see SO many people come together to celebrate our Simon is more wonderful than I can say. Last year, I wished that he would always be as loved as he was then. The funny thing about love, though, is that it is exponential. The more you put out, the more it comes back -- and Simon puts out a LOT of love.
It isn't a proper party without a pinata.
Dearest Simon -- with each of your six candles I make a wish; for health, for safety, for progress both physically and cognitively, may you be happy, and may you always and forever be as loved as you are today.

Tuesday, April 10, 2012

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.

Wednesday, April 4, 2012

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'