People often ask me how I cope with everything that is going on with Penelope. “How do you deal with it?” they ask. “If it were me, I would lose my mind,” they say. And the truth is, some days I do feel like I’m losing my mind. When she was first diagnosed, I was up all night, watching her sleep between feedings, terrified that if I closed my eyes, she would have a seizure or stop breathing. As time went on, and she didn’t have any seizures, I adjusted. I wasn’t happy about the situation, but at least I could close my eyes again without the fear that something was immediately about to go wrong. And I think what got me through that time, and what still gets me through every day, was reveling in the little moments that happen every day-those little moments that bring happiness and are what make life worth living.
Little moments like Charlotte running up to me, throwing her arms around my neck, and declaring, “You are the best mommy in the whole world!” Or, “Mommy, you are so cutie!” I inhale her uniquely Charlotte scent- a combination of laundry detergent, shea butter lotion, and coconut shampoo- and I cherish the feeling of her small arms wrapped around me.
Little moments like when I have Penelope in the bath at the end of a long day, and she is full of smiles. She coos, and kicks her legs in the water, and I can feel my stress being washed away. Some days, the best part of my day is seeing how happy she is in the bath.
Little moments like Charlotte coming upstairs, dressed in some crazy combination of clothes. I’ve seen her wearing pajamas over her jeans, a tutu over the pajamas, accessorized with a sun hat and fairy wings. She is always so proud of her creative outfit, and I am proud that she is able to indulge that free spirit.
Little moments like when Charlotte asks me if she can sit with Penelope and wants me to take their picture. She adores her little sister, and the feeling is completely mutual. Often, when Penelope is fussing for whatever reason, Charlotte is the one who is able to get a smile out of her. I love seeing that sisterly bond.
Little moments like Penelope achieving a milestone. Last week, she finally rolled over for the first time. She wasn’t quite 100% of the way over- she couldn’t get one of her arms out from underneath her- but it was a big deal, and it filled me with so much joy.
It is the little moments that get me through. I don’t think that is unique to our situation, though. I think that is how most people get through life, and you don’t need to have a child with complex needs to relate to this. Like every parent, I’m just taking it one day at a time, trying not to stress about the things I can’t control, and trying to take pleasure out of all the good things in our life- and there are a lot of good things here.