Originally published June 25, 2011
I don’t know if it’s possible to be on a camp high if you didn’t actually go to camp, but that’s how it always feels for me the week after Shelby gets back. I am so grateful for the break for Chuck and me, and so thankful for the wonderful staff and volunteers who ensure Shelby has such a great time. And it feels normal. “Normal” kids go to camp. There is so much she can’t do, but Camp Spike N Wave overcomes those obstacles. I know – I’ve seen the picture proof. Here is a list of things her sweet counselor sent me that Shelby got to do this year: She rode a zipline and a giant swing, competed in the talent show ( identifying animal sounds and singing “You are My Sunshine” in her own special way), rode a horse (assisted) that was sprinting and jumping over logs, caught 5 fish, and scored 3 points in kickball (that I’ve got to see)! If you know my Shelby, you are astounded with me at these things. Her counselor claims that she was the most popular and loved girl at camp and that her cabin mates sang her to sleep at night. You have no idea the balm that is for this mama’s soul, when I constantly worry how others might perceive her or that she could be made fun of. Most people wouldn’t aspire to “normal”. “Normal” might sound boring to some, but we will take as much of it as we can get. With Dravet Syndrome, we have to adjust to a constantly changing “normal”. This year Shelby has lost skills that she had the year before. Last year her sleeping patterns changed – for the worse. We are blessed right now to have pretty good seizure control, but we know that could change in an instant. So we celebrate and cling to “normal”, knowing that God gives enough grace and strength for us to adjust when that changes. But for now, we will ride on our camp “high” as long as it lasts, and send a huge “Thank You” from the bottom of our hearts to Katie Langley (counselor extraordinaire) and the staff and volunteers of the Epilepsy Foundation for making it all possible.
The Sparks Notes
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