Little Moments

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.

My sweet, huggable Charlotte

My sweet, huggable Charlotte


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.

Penelope loving her bath

Penelope loving her 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.

Charlotte dressed in her interpretation of the tooth fairy

Charlotte dressed in her interpretation of the tooth fairy


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.

My girls

My girls


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.

Rolling over for the first time

Rolling over for the first time

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.


8 thoughts on “Little Moments

  1. Having found a way to give her nourishment, she looks like she is thriving. I love the chubby little legs and her big smile. Charlotte is such a sweetheart and a very loving sister. So glad the happy moments are outweighing your stressful ones Julie. You’re doing a good job, Mom!!

  2. Charlotte has quite the imagination. I love her idea of what a “fairy” looks like. And what a wonderful milestone for Penelope. Babies are always so surprised the first time they roll over … love those moments of childhood. Those smiles lighting up the girls’ faces say a lot so just keep doing what you are doing, Julie! BTW, I was telling Aunt Kak about your blog and she sends her love ♥

  3. Hi Julie,

    I just wanted to let you know that I am following and reading your blogs every time you post. You are an amazing writer and amazing mom. You are truly inspirational to me, feel like I can learn so much from you. I am very glad that you are able to find happiness in the little things and moments. Charlotte is such a ‘grown-up girl’ wow. Time flies for sure. I remember her in her yellow duck outfit running around at Pam’ s apartment. She is an adorable doll for sure. That is great news that little Penelope managed to roll over. Also, I love her name, Penelope it is such a beautiful name. 🙂

    Stay strong Julie and looking forward reading you blog.

    Ildiko aka Coco

  4. Julie, you are a terrific writer and I can just picture how much sunshine the girls bring into your life! They always have big smiles in the pictures you post and that is lovely to see.

  5. Every day we get up and we make choices. We can be miserable and complain about our lot in life or we can be positive and find sunshine and happiness in these little moments. Continue to choose the little moments Julie because that is what life is all about.

    Your writing reminds me of Daddy.

    All my love to you and Mark and the girls.

    Love Anne Marie

    • Leave it to Annie to be so logical! Behind that old aunt personna she is full of ****,/ I mean wisdom.jk. she has a way of helping one to see things in a more reality based approach and I can testify to that. You are doing great Julie. All those feelings are perfectly normal. But keep writing , it is in our blood to want to write. It is a perfect outlet.

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