There are no small things. No small moments.
Last week Haley was doing incredibly well. Through a full moon, and traveling, and changes in sleep schedule because of the holiday- all seizure triggers- she had nights where I could count her seizures in single digits. It’s been months since she’s averaged fewer than 20-40 seizures daily. That reprieve and the depth of gratitude that I felt for it was a reminder that every seizure she can avoid is a moment of her life that she didn’t miss out on. Even if it was just one, it was worth the time to pause to reflect and be grateful for that moment that she stole from epilepsy instead of epilepsy stealing it from her.
This life I am living, WE are living, has taught me the importance of taking nothing for granted. As defeated as I often feel and as heavy as the grief is that I carry, I still remember to stop and cherish the feeling of warmth as the sun hits my face. I revel in the green smell of a freshly mowed lawn. I work harder to take in all of those things around me that most people are too harried to notice. And I do it because I see daily how fragile life is, how tomorrow is never promised. I do it because Haley has taught me that this moment is the only one that matters and if I don’t acknowledge it and the beauty of it it will be gone and I may never get another one.
And even in the hard moments I try to stay fully present. It would be easier to disconnect and guard myself against the pain I feel when she cries out in fear, or when she convulses and can’t breathe, and the only words I can utter are desperate pleas to just breathe, please just breathe for Mama. But I can’t. I owe it to her to live those moments that she’s being robbed of, and to live them fully. So I let the tears fall. I let the pain and sadness engulf me in those moments, and I let it fuel me to fight harder for her.
And I turn to humor when I’m hurt. Sarcastic, gallows humor as a protective measure. Her nickname is McSeizy, cyanosis is Smurf-ism and it keeps that pain and sadness that engulfs me in those moments from engulfing my life. Because I see how important it is to live. One great life, one life full of love, laughter, warmth, risk, appreciating every single moment, because one life is all you get. And you never know when it’s just going to be over. Life is fleeting and fragile and I am reminded of that every day.
So I will consciously acknowledge and appreciate the things others miss. The rose petal softness of her cheek as she snuggles up next to me. The weight of her head on my shoulder as she rests on me after a seizure. The soft feeling of her breath as she breathes freely, a miracle in and of itself that I find myself grateful for, on my cheek like butterfly wings. The way that she gropes for my hand as she cries out in fear and the pressure of her grip as she convulses. The desperate way that she continues to cling to my hand when the seizure ends. The beauty of a seizure free summer afternoon at the beach. The way we dance in the frigid cold of the waves. The sound of genuine laughter escaping from her lips as she plays. The unfiltered joy in her face as she swings higher, unmindful of the dangers imminent if a seizure strikes. Sometimes some moments are worth the risk. Because without any we wouldn’t be living this life at all. We would merely exist here. Life is meant to be lived. Fully. Freely. Present in every moment. Open and raw with your heart on your sleeve. Live hard. Love harder. And don’t forget to stop and smell the flowers of a pretty green plant that is changing misconceptions and minds while saving lives.