Go!

Last Sunday Macayla had three grand mal seizures. She has never had grand mals before and it took a while for us to figure out what was going on. However, she stopped breathing during the seizures, the longest of which lasted about 45 seconds. She bypassed turning blue and turned gray. She turned gray and her eyes glazed and she looked like she was slipping away. I tried suctioning her to get her to breathe, but nothing seemed to work. It was a helpless feeling. It was a moment when you realize you are watching your child die and there is nothing you can do to stop it. Fortunately, Jennifer got home in time for the third attack and she recognized it as a seizure so we gave Macayla Diastat and it stopped them. Macayla's immobility made it hard to recognize it as a seizure and the first indication I had of a problem was when Macayla threw up. I thought she stopped breathing because she was choking on vomit, but it was the seizure that stopped her breathing. After getting the Diastat (a rectal valium medication) she slept for 13 hours without another problem.

The whole event shook me up. We were scheduled to leave the next day on vacation at Camp New Hope, but I truly wanted to stay at home. The thought of traveling 4 1/2 hours to a remote location seemed overwhelming. But Jennifer's wisdom, faith and strength has a way of straightening me out at times. She observed that we did all the intervention we could have done and it would not matter if we were at home or in the mountains if it happened again. She reminded me that Macayla would miss out on a great trip that week if we did not go. More importantly, we had decided the day we got the diagnosis of Battens that we could either curl up and die or we could live and we chose to live. Macayla's life is not the way we pictured it, but it is the life she has and we must live it. We are so glad we went to Camp New Hope this week. Macayla had a great time. She lit up as soon as we put her on the Bobcat (an open air mini-truck that has four-wheel drive; picture a golf cart on steroids). She loved the vibration and the wind in her face and the bumps as we road around the mountain. She got to go skinny dipping in the river one day and squealed with delight. The next day we put her in the river with clothes on and she loved it and laughed. Laughter was the word of the week. Macayla got so tickled on Thursday when she sat on the floor with a couple of dogs that happened to be there. Muggsy was a little Pug that licked Macayla on the face and Macayla started laughing uncontrollably. She got so tickled that everything we did for the next three hours brought laughter. She wore herself out laughing and playing in the water and almost dosed off riding in the Bobcat afterward. Jennifer and I remembered this week that the last word Macayla ever spoke was, "Go!" She used it in therapy to indicate she was ready to go down a slide or start an activity. Even when she could no longer make the "o" sound

she would just make the rough "g" sound to mean "Go!" After she lost that ability, she would hit a switch that activated a voice recording of the word "Go!" Jennifer observed how appropriate it was that Macayla's last word was "Go!" That is a great reminder that we must keep going. We cannot curl up and hide. We cannot stop living life just because it turned out shorter than we expected. Whatever life any of us have must be lived. If we had stayed home this week, we would have missed out on some of the most precious moments of life we have had with Macayla. It is scary at times when Macayla's condition progresses to a place we've never been before. It can feel overwhelming to get everything together and travel. We cannot control the disease. We cannot control all of our circumstances. But we can decide how we will respond to those circumstances. Macayla has reminded me that life is experienced when we get up and "Go!"