One of the things about living with deep love for someone with a progressive illness is that the grief ebbs and flows-- like the tide. This year for me grief was a spring tide at full moon. It breached my seawall and flooded my reserves.
The low point was a trip to the emergency room by ambulance-- the 10 in a month-- for seizures that would not stop. I watched the nurse team thread the IV, and laid my head on her bed, holding her hand and singing to her. She stopped seizing and slipped into the deep sleep of her post-ictal state before they got her meds on board. When the doctor came in, she said, "I don't know why you keep bringing her in, there is nothing we can do. " That was the high water mark.
But the ebb always has followed. Four months later, she has been seizure free for three months. (There really are some things they can do for her.) But not well, yet. Maybe never.
I recognize the state I have been in for six and a half of her eight years. It is the same state I was in for the two years my father was dying of cancer. The heightened alert state that comes with dealing with a health crisis. The almost crushing desire to make every moment count. Of knowing the last moment is near. Except that now I must learn to sustain this for a lifetime, twenty, thirty, forty more years. If I live that long.
Sometimes, like now, the urgency ebbs. As she goes through a spell of being relatively well. Then I have time for other emotions. I want to run after the tide, chase it to the low tide mark and throw sticks at it, rage at it for ruining my sand castle dreams, the imagined life of parenthood.
I took her two sisters to the mountains to play in the snow this weekend, and we had so much fun! We played until we were exhausted and cold, then drank hot chocolate from our thermos as it began to snow. It was a slice of heaven. And all day, I missed my other girl. All day I was racked with guilt. She was home with my partner, watching movies and hanging out... her favorite. We know she hates the snow. Her poor circulation puts her at risk of frost bite. Of course she cannot come. Of course she is happier at home with dad. Of course I am lucky to have a partner who will be that dad to her. But I missed her. I missed what might have been. I missed seeing her joy in our shared experience.
I want her to be well, to be whole. I want joy for her-- for her world to be bigger. She who has had so little, and deserves so much. I long for a cure. I long for a cure.
And in the meantime, I long for acceptance. And strength. And a better seawall. That aphorism that god only gives us what we can handle is a bunch of hooey. We handle what we are given if we can. I hope to handle what I am given with a bit of grace and a lot of love. The love is easy. The grace? Not so much.