As I sit down to write this, it is Sunday at 4:30 pm and I have just gotten home from hosting our annual Tuberous Sclerosis Alliance picnic at Mason Regional Park in Irvine for over 100 people. I am rather exhausted but super content because we had a really great turnout this year. The picnic tradition started years ago, I am going to estimate 8 years ago? Our local Orange County TSC group decided to have an annual family picnic for everyone to just hang out and mingle with other families dealing with the same issues. No fundraising, no planned agenda, people just meeting one another and talking about how great or how bad their child are doing living with Tuberous Sclerosis.
Somehow, I took over this job years back but because Tiara has been such a handful the past years, I totally abandoned the picnic for 2 years. A few regular TSC volunteers, strong armed me or rather mildly suggested I get my butt in gear and host it again, so I did. I was complaining all week to Lou that I couldn’t do it again, it was too much work. Just when I wanted to give up, a little angel handed me $500 to help with the expenses. As a result, I just walked into Subway and ordered platters of sandwiches instead of dealing with the BBQ’ing which we have always done in the past and is lots of work. Isn’t it amazing how money can really simplify some problems?
Anyway, with the help of my family, and the regular volunteers we pulled it off and it was amazing to see all the kids and families together again. What some of you may not realize is that there is a huge spectrum as to how severely some people are affected by Tuberous Sclerosis. Tiara is obviously on the very severe end of the spectrum but there are others who are totally high functioning individuals that appear to be completely “normal”. We met a girl at the picnic today who has TSC, was in the Vigabatrin research study with Tiara and is now a gifted pianist. She was recently invited to play piano in Carnagie Hall. Wow!!! As April, a co-volunteer, said today ” when we all met and our children were barely toddlers we had no idea how any of them would develop?” We met, discussed the seizures, the behaviors, the schooling, the therapies, the surgeries, the best doctors and everthing else under the sun, but no one had any idea how anyone’s life would evolve.
Today, I heard lots of stories about varying degrees of autism, horrible special education programs, continuing problems with seizures, lots of violent episodes but I saw only happy, happy kids enjoying a picnic, despite all their problems. Even though the majority of the kids were preteens or teens, many of them still enjoyed the play dough station, the bubbles and they all loved the water balloon toss. Funny enough, I didn’t see one seizure, one bad behavior or one melt down. It was odd, everyone just got along and it was easy.
Like our family, most of the families have had it tough but many had several years of reprieve from seizures until the dreaded puberty hit. Oh puberty has not been kind to most of the TSC kids. Most of boys and some of the girls have lots of Angiofibromoas (tumors on the skin) on their face, along pimples like every other teenager. The only way to get rid of the tumors on the skin is to have them lasered off and then they grow right back or take a medicine that was recently FDA approved to help shrink tumors in the brain, kidneys and it also works on the skin. Unfortunately it is like a chemotherapy drug and can cause sores in the mouth and a suppressed immune system. Ugh!
Other TSC children have had to deal chronic kidney problems because so many tumors have grown in their kidneys they have developed kidney disease. One of our “regular’s” is getting ready for a kidney transplant. This sweet little girl is bright and adorable but has been dealing with kidney problems her whole life because of Tuberous Sclerosis Now at 11, her kidneys are only functioning at 22%, and once they reach 20% she will have a transplant. Not only does she have to deal with the pain, her swollen abdomen, the medicine and everything else I don’t even know about but she has a restricted diet, and is smart enough to have fears of her upcoming surgery. It is so hard for her and for her family.
I am sure you have heard the saying “God doesn’t give you more than you can handle,” hundreds of times in your life. I know I have. Either way at the end of today, that saying was resonating in my mind. All of the families I met today and have ever met in the TS community are really special people and all seem to handle the challenges they face on a daily basis with class and grace. God must have hand picked us for some reason?