iamable
Beautifully brutal or brutally beautiful…
Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. As a family, we were leaving our friend’s house. We were walking to the elevator of their apartment building. AJ and Magnolia were walking ahead, I was walking with Gray, while he was scooting. I was so impressed with his scooter skills. He just got it for his birthday. AJ told him once, how to use it. And that was that. Gray was able to balance, push with one foot, lift his foot up, use his foot as a brake and navigate. It was awesome.
Magnolia had a scooter when she was the same age. Three years old. Three years old is when Rett took over. We kept pushing her to use the scooter, we would have her hold on, while we put our hands over hers. She could balance, but we did everything else. As I watched Gray, the memories of Magnolia came flooding back. I had to take a deep breath. Remind myself, that isn’t where we are. It happened. At this moment, we are here. Gray is riding his scooter down the hallway, having a blast. Magnolia is walking with her daddy. She is walking and she has fought for that skill. She may not be able to ride a scooter, but she can do so much. Ahem, balance on a skateboard. Our lives are complex. We are navigating them, the best we can. There is camaraderie within the Rett community around the accepted fact that Rett parents live with grief. It comes in waves. We live moment to moment and we have no real choice what that moment will be.
As a parent of a child with a complex disorder, sometimes we have to choose positivity because life isn’t choosing it for us. Our lives are brutally beautiful.
Grayden at 3 years old, living his best life.
Magnolia at 3 years old, taking on a Rett life, but making it her best life.
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.
Diagnosis Day – Five years later
On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger.
The last five years have been the most difficult in my life. I’ve watched my daughter lose skills, regress, have seizures, need CPR and be hospitalized. That has been her life, at least that is what Rett has done to her.
At the same time, she has fought for her lost skills. She has pushed herself mentally and also physically. She has overcome relentless side effects of many medications. She has screamed in agony, squealed triumphantly and shown strength, immeasurably. She wakes up every morning with a smile, in the hopes that today will be better.
She has had five more birthdays.
She endures. She fights. She inspires. She is beyond brave.
There are days, weeks, and months that are unrelenting. She gets knocked down, she gets up. She is fighting Rett Syndrome like she is Ronda Rousey. I’m just her trainer on the sidelines. I wish I could just tag her out and take her place, but I can’t. All I can do is help her, give her strength, give her love and be her voice.
She is my warrior girl.
