The drastic swing of a pendulum

Newton’s 3rd law states…”For every action there is an equal and opposite reaction”. I’m starting to think that pertains to our life right now. Whenever our life swings in one direction, its not very long that it seems to swing in the complete opposite direction. Our pendulum swing is drastic. For us, for every amazing moment with Magnolia, there is an equal and completely opposite dramatic life altering moment with her as well.

Her seizures and breathing issues truly rule our lives. I wish they didn’t but they do. Before the holidays, we honestly believed we had figured out how to help Magnolia with her breathing issues and seizures. We had started a new medication and her breathing issues and seizures seemed to have stopped. If you remember, September through November, her breathing issues were so bad. We were at a loss. We talked to all of her doctors, specialists and therapists. Everybody was brainstorming. What could we do to help her? We were referred to Dr. Tarquinio in the Atlanta Rett clinic.  There wasn’t an immediate appointment available and at the time, we were planning on going to Aruba for the holidays. We both knew, it didn’t look good. It didn’t seem she could make the long trip to Aruba, much less travel at all. We were desperate to help her. Not just because we wanted to travel, but because we wanted relief for her. Before we even made the trip to Atlanta, AJ, Dr. Tarquinio and Magnolia’s epilepsy neurologist at CHLA worked together and decided on one particular medication. It worked.

We made an appointment to see Dr. Tarquinio in Atlanta. Now it wasn’t urgent but we still wanted to see him. A couple of weeks went by and we knew, we might be able to travel. For weeks Magnolia was better, so we went on vacation. Of course, everyday we would wait for the other shoe to drop, it didn’t. At least not before or during the holidays.

After vacation, we came back to LA and things started to change. The pendulum had swung. Everyday we would wake up and her breathing became worse. We watched as everything started to pile back on. At first, we thought she’s exhausted from travel, it’ll balance out. Then she caught a cold and we thought, once her cold is gone, she’ll be better. Then she caught a stomach virus. Still the breathing got worse. We felt useless. We feel useless.

It’s hard to live in the extremes. Its difficult to have the world open up for her, just to be taken away again. Our lives swing from being able to take adventures. Skiing, rock climbing, surfing, hiking, biking and swimming  To rescue medications, packing hospital bags and debating on whether she should go to the ER. There’s very little in between. We would love to live somewhere in the middle of the pendulum.

1 thought on “The drastic swing of a pendulum

  • My heart goes out to you and your family. I think of you everyday as I look at the Holiday card you sent me that remains displayed in my home regardless of the time of year. I pray that the right people will cross your path as you continue your journey with faith and hope.
    Love and Blessings,
    Ruth

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