Hemi Picnic

On Saturday, Brigid and I went with Rachel to the picnic for the Hemispherectomy Foundation. It was at a park called Shane's Inspiration in Griffith Park. The play equipment is all wheelchair accessible. It was great! We got there early to help set up, and I acted as a photographer. The picture to the right is of all the families of kids who had hemis, and the neurosurgeon (in blue shirt) that performed at least half of them! Words cannot describe how inspirational these kids and families are! It was a beautiful day, not too hot. The kids all had so much fun playing. They had a lady come who did face painting, balloon animals, and bubbles. The fire department brought an engine that the kids got to sit in and get pictures taken (a couple kids even wore the captains helmet!). It was a very emotional day for many of the families. Most had not met in person before. A few of the leaders of the foundation flew in from out of state. The foundation has only been in existence for about a year, but already they are opening offices in other countries. They provide an amazing network of support, medical help, and they even raise money to help families with travel

expenses and education for the kids. One of their newest accomplishments is helping a family in Bosnia to come to the states to have the surgery for their child- they got a surgeon to do it pro-bono! I got to sit in at breakfast with the Foundation people before the picnic and be a part of their brainstorming session. I hope that I can find a way to continue working with them. They are such amazing people! At the end of the picnic, when they were thanking everyone for coming, they got the doctor to come up and say a few words (I can't remember his name, unfortunately, but he is with UCLA). He said that he gets a lot of credit for what he does, but it is his job, he isn't deserving of so much credit. He said that the people who DO deserve credit are the parents. For them to come in to his office, and listen to all the risks of the surgery, be told that there are no 100% guarantees, and still make the decision to go through with the surgery- they are the heroes. And he is so right! No matter how much you empathise with these parents, you can never really understand what a difficult decision that must be. They know that in most cases it is a necessary evil, so to speak; if your child is having 100 seizures a day, and you know the damages the seizures can have, the surgery is sometimes the only hope. But nonetheless- to make the decision to remove half your child's brain...! I can only imagine! But now, you see these kids, having fun, playing, some talking and even running! It was so amazing! The last picture here is of Brigid and two little girls that she kept playing with, Chloe and Hannah, both hemi kids, tackling a photographer (again, the name escapes me). He was the one from the Tribune that originally covered Aiden's story before his surgery. He has become a friend of the family, and takes pictures of all their events now. He was taking pictures of the three girls playing, tickling each other and rolling around in the grass, when suddenly, they ganged up on him! The had him on the floor, trying to tickle him, blocking any camera shots he tried to get. It was so funny! We had to keep telling the girls to be careful not to hurt the camera, or him for that matter!

It was such a great day, and I am so glad I got to be a part of it. Brigid did a good job, she helped blow up balloons, helped clean up after, and all in all acted well. It was a very long day, so I'm even more impressed with Brigid's behavior. We left the house around 10 am, and didn't get home till about 7 pm. She didn't get to bed till 9 that night.