Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.
They gave her five more years.
That was five years ago.
I spent five years preparing myself for her inevitable death. Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.
But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.
I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!
22. No one believed she would see age 22. Not even me.
On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.
I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.
Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.
I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.