Try on Grandma's Shoes

So, imagine that you and your husband plan a big, exciting trip to a child's paradise, to enjoy an exciting vacation with your precious grandchildren. In the late afternoon of your first full day there, you are alone with your little "princess," as the Disney cast members call her, and the two of you enjoy multiple trips on her two favorite rides. When she goes limp as you walk off your third carousel ride, the magic comes crashing down. You've seen her have a seizure once before, in her own home, with her parents there to take action, and it ends quickly. That was painful to watch.

Now it's all on you. You're in a crowd of strangers and have to run 10 feet to the stroller parked in front of the cute flying elephants. You have your son's coat to lay on the ground, you have the rescue med with instructions tucked somewhere in your brain and on a card, which suddenly seem to be written in Chinese. You know she needs that right away, but her parents need to be contacted right away. So which - when - how - wait, first - no, maybe - where - how - breathe --- Suddenly you hear two women's voices: "Do you need help?" "Yes! Take this phone and call Nick." Phew, that's taken care of. Now, how do you spray this stuff up her nose? Pull? No, twist. Why is it shaking so much? Oh, that's your hands. Ok, breathe. You get it in, but you're not sure if you pushed it fast enough, or if it just dripped in there. Then an angel in the form of an ER doctor shows up. He gives her another dose, making sure it's sprayed and absorbed. He assures you she is ok, even though she is turning blue. He continually checks her pulse and asks if you have a cloth to catch the spit up he correctly predicts will come. He brings a confident calmness to the situation. A woman is holding her hand. The parents arrive. It's no longer all on you, but how do you feel now??

I sincerely hope you feel not an ounce of guilt for any part of any of it. As far as a trigger: it was a culmination of everything loaded on her senses over the last two days: sleep deprivation, travel, hunger, heat, excitement, noise, movement, newness... And as far as the medicine: you should have seen my first time with the atomizer! And that was in the quiet of my own home. I think Gramma deserves a trophy for the way she handled this nightmare, but I don't want to give her anything that will remind her of this horrid scene. So I invite everyone to leave a comment on this post, giving kudos to grandma for handling this frightening situation so well.

And by the way, that doctor just "happened" to be spending the day at Disneyland with his family, when his wife alerted him to what was going on. How could anyone not see God's providence in that? He even knew what Dravet was. And he stopped by the first aid station later to ask how she was doing.

All of the Disney workers/cast members took care of us so well. They even cleared out all the beds when we arrived to first aid. They offered us stickers and front-of-the-line passes for our lost fun time. They brought in Pluto for our own private meeting, lighting up Melanie's face and healing her with giggles.

While we were recovering at First Aid, I got a call from Michele, a mom whose beautifully long-lashed son :-) also has Dravet. They live very close to Disneyland and visit regularly. We were hoping to meet up for dinner that night, but instead when I told her what happened, she told me which hospital we would want to go to, what doctors to ask for, and to call her if we wound up going there-- even in the middle of the night. Imagine the comfort that brought me! A friend, protector, advocate so close by! We were able to meet Tuesday morning over breakfast, and we all got in a couple rides together, before Melanie headed back for a nap and James, mom and dad went on the Star Wars ride again. I wished we'd had more time to talk, but I'm so glad we met!

I will be writing thank you notes to all of these people for their help, and if anyone would like to send me some thoughts and thanks to add, I'll be happy to include them. I only wish I knew who the two women were who helped in the first moments and held Melanie's hand. I hope they know we're all grateful. Praise God for His protection.

"for you have been my help, and in the shadow of your wings I will sing for joy.
My soul clings to you; your right hand upholds me."
Psalm 63:7,8