Here is a favorite of mine. I actually started writing this when Fiona was six. I saved it in my writing folder always wanting to share it. I finally got that chance to share it this year. It was published on Age of Autism, August 17, 2014.
When I Grow Up
When my thirteen-year old daughter was six, she was at the magical age of "Mommy, when I grow up I'm going to be a ballerina, veterinarian, singer and baseball player. Oh, yes, I want to be a Mommy too. What do you want to be?" Gosh, if I had energy to be all of that I'd join Fiona in her fun. Most days I just want to take a nap, not do anymore work!
Fiona is heading into her teenage years. Pretend play has been replaced with reading novels, playing video games and hanging out with friends. Even though Fiona has outgrown most of the toys, her younger siblings are still knee-deep in pretend play. We both watch the younger siblings scatter her hand-me-down toys around the house taking turns making up the next imaginary adventure. During the school year, with a heavier workload than the littles have, Fiona will sometimes complain about how they get too loud and take over not just the playroom but the living and dining rooms as well. I remind Fiona that it wasn't so long ago that she too played as heartily as they do. She'll get a gleam in her eye and say, "Oh, yeah. I remember." We both laugh while also shaking our heads. When homework isn't as tough and when deadlines for projects aren't looming overhead, I encourage Fiona to take a break and jump in and play. She doesn't miss a beat and enjoys feeling like a little kid again.
It's fun to pretend and imagine ourselves elsewhere. On days when things get really tough, like during one of Ronan's meltdowns after he’s lashed out and pulled her hair, I know that sometimes Fiona longs to be somewhere else. She’d rather be with her typical friends in their quieter homes. Those friends have never been asked to take over seizure watch while their mom runs to the bathroom. They don't have to help change their 11-year-old brother's stinky diaper. They don't have to sit in waiting rooms for 30-60 minute stretches feeling as if time is standing still. While she's reading news stories about autism and asking questions about mito disease, some of her friends are posting pictures to Instagram and sends texts about a favorite pop star or television show. Fiona’s in a different place, worried about different things. Her experiences are very different than those of her peers, but I’m positive those experience will take her farther in life with good purpose.
I can see why Fiona wants to hang out elsewhere--on the very tough days, I sometimes want to run away too. We don't always have the luxury of getting her to social events with classmates but recognize how important it is to get some sort of respite from being the big sister. Just as I need some down time, so does she. To say thanks and to give her some time away, Fiona will get to do something fun out in town on the weekend with just Daddy. She'll get to stay up later to watch a medical documentary or a film about World War II. Other nights she and I will have chips and salsa while we look at her old baby pictures. Those nights bring the most giggles as we look back in time. That’s when life wasn’t as busy, when it wasn’t as stressful and her head was filled with playful dreams she couldn’t wait to fulfill.
Life is a little bit different now. As Fiona has aged, her playtime has turned into study time—and not just studying for school, but studying topics like how food affects her.
No stranger to dietary intervention, we were forced to begin an elimination diet for big sister not too long ago. Fiona wasn’t happy about it. But she knew that in order to understand why these changes were necessary she should research some of it on her own. After learning why her body was reacting to foods as it was, she understood we needed to make big changes. One option, one she really didn’t want to make, was joining Ronan in eating foods that were gluten free.
Not satisfied with the taste of many of the foods Ronan eats and likes, Fiona asked if she could bake something for herself. Go for it, I encouraged her. And she did. Now, after months of tweaking, taste testing and perfecting recipes that intimidate a seasoned cook like me, we now have neighbors and friends requesting that Fiona bake gluten-free desserts for their family functions and open houses.
Preschool dreams of being a pink ballerina have changed. Fiona now wants to open her own bakery that will serve gluten-free muffins, cakes, breads and more.
|The cinnamon to delicious ratio is perfect.|
I know that Fiona will be first out of the house. I have a feeling she will go far away, too. She won't be running away from us though. She'll be running toward her dream—last year during spring break, Fiona looked up colleges that offer culinary arts degrees. Her top choices are several states away in the northeast.
I recognize how different Fiona's childhood is compared to the more carefree one that I had. I don't like how she's had to grow up so quickly, but I have faith that her knowledge, passion and determination will guide her. I also know that when she does go far, far away to explore and experience new people, places and things, the close family ties she has with her siblings, especially with Ronan, will keep her heart in another place--always with her family.
|When they were younger, big sister was the first to make Ronan smile. |
She still has a way to bring out the belly laughs.