Sophie Hartman wrote this about her daughter, AHC Champion Carmel.
Up, up, up, then falling-
down, down, down.
No telling how long the climb, never how steep the fall.
Minutes or hours, days or months
Its like the changing of the seasons, wait-
The mixing of the seasons,
All of them at once, sometimes
Then the rain, and the storm, and the sun
Then the Promise in the sky-
Then the sleet and the hail then the calm, once more.
Up, up, beautifully up, then falling
Down, down, oh so cruelly, down.
Beloved, give us grace to endure the rhythm.
AHC is a wild ride, but we are learning. In as unpredictable as a disorder as AHC is, we are learning it’s ways, however cruel or however beautiful. It is a constant effort to not let AHC dictate our days, trusting Jesus and fixing our eyes on him through every up and every down.
Carmel experiences ‘episodes’ that look different nearly every day. Some simply a more pronounced weakness on one side of her body for a period of time, other times a full paralysis. Sometimes seizures, sometimes loss of cognition and communication skills. Sometimes all at once. Sometimes none at all. Her impairments are often still unclear- the extent to which this disorder reeks havoc on her little body is still not fully understood. Episodes of any type are incredibly hard to watch Carmel go through, but honestly, not what she or I would say is the worst part about this disorder.
You see, there is this period of time before Carmel starts to “crash” – this almost blissful period (sometimes hours, sometimes days) of near bionic energy and enthusiasm from my girl. It’s almost like a euphoric energy comes over her- where she feels boundless. She believes in herself. She jumps higher and walks longer. She speaks more intelligibly and she never. wants. to. stop. She fights sleep. It is exhausting, but eventually even she gets tired, and then before you know it, AHC attacks again. After the ‘episode’ sometimes she returns to a much milder form of herself- tentative and frustrated, exhausted and irritable. Sometimes, it’s worse and she regresses much more. But she almost always seems to forget what it felt like to feel free.
We do too.
It’s just not fair.
Here let me just say it:
Sometimes, I hate to see my girl so free.
I know that seems terrible to say, but it’s not really like it sounds. I actually love nothing more than when she is full of confidence and abounding in energy, because for a moment, our lives feel normal. Her joy is contagious and as a family we enjoy celebrating all the things she CAN do. Her precious voice fills my heart as she runs into my room, “Mommy, I did it!” over the tiniest but HUGE accomplishments. My heart soars with pride as she balances longer than she ever has during therapy, or for the first time completes a small wooden puzzle all by herself. My whole being gets lost in wonder as I watch her explore the world, with her eyes so bright and filled with excitement. But the longer this goes on- I feel my chest start to tighten. Slowly I open the door to the doom of wondering when this “bliss” will end, scared at how far the drop will be. Cautiously, I begin to brace myself, and the sweetness starts to feel sour. I can see it in her, too.
It’s almost like it starts to drip out of her, like the liquid energy she has been on is now all dried up. At first, it courses through her system and then begins to fade, slowly. It’s a change in her eyes that I notice first, like the hope doesn’t feel so tangible anymore. And then in her body. She slows down, way down, and the excitement starts to evaporate. She struggles to sleep. She cries a lot. She smiles less. Soon, all of us feel the weight of reality come crashing down again.
Freedom that flees isn’t really freedom.
This is why I hate AHC.