She is Magic

From the moment you see two pink lines on that pregnancy test you start imagining that sweet baby-YOUR baby, and the life they will live. Will it be a boy? A girl? You start thinking of names and picturing what they might look like. Will they have hair? Dads eyes? My nose? You start researching the safest car seats, the best family cars, the smoothest stroller, ALL the things. Almost seven years ago, I was pregnant with our last beautiful baby. We were expecting a girl and after LOTS of debate, we chose the name Finlee Rae for her. Our boys were upset that they were going to be outnumbered by girls and consequently outvoted when it came to choosing movies for family movie nights. They are huge Star Stars fans like their Daddy so Fin and Rae came from two of their favorite Star Wars characters and Lee is my middle name. Finlee Rae-it was perfect and we couldn’t wait to meet our girl. From day 1 she was determined to do things her own way! After nine successful vaginal deliveries, she was born via emergency c-section. Cord prolapse is really all I remember from her birthday-the rest is a blur. Her first year was pretty uneventful, but shortly after we started to notice she was super sensitive to noise, she hated clothes, hated a wet/dirty diaper, and she NEVER slept! I brought up my concerns to her pediatrician, but he wasn’t concerned because she was meeting all of her other milestones. As time passed, it became clear that Finlee was going to march to the beat of her own drum and while I was 100% fine with that, I wasn’t sure how to be her mama. I wasn’t sure which behaviors she could control and which she couldn’t. I didn’t know what exactly I was dealing with and every time I tried to get help and answers my concerns were brushed off.

We tried occupational therapy-the therapist adored her and kept saying “but she’s so smart!” I agreed-she’s so smart, but there was something more going on here. She was diagnosed with sensory processing disorder which answered some questions, but not all. We went to a sleep specialist because by age four she still hadn’t slept through the night-he printed me off a paper on the Ferber method and sent me on my way. I cried the whole way home. I wasn’t a new mom, she was my tenth child-why wasn’t anyone listening to my concerns and taking me seriously? Our pediatrician (who truly is amazing) was willing to listen and give me whatever referrals I wanted, but then Covid hit and everything non-emergent was put on hold. No answers, no sleeping, and now we had nowhere to go to burn off energy or find sensory input. Thank heavens for Pinterest! As the world shut down, we built a climbing wall in our playroom, hung swings from the ceiling, and bought the ingredients to make playdough and slime in bulk! We added a ball pit and nugget couches and we were able to recreate occupational therapy at home and have some fun while doing it.

The older she gets, the less patient other people are with her behaviors. I find myself envious of parents whose child has a visible disability like Down syndrome-people see their beautiful children and adjust their expectations accordingly, but my Finlee looks like a typical six year old and frequently behaves like she’s two. I get comments, looks, and glares often. People seem to assume it’s just a lack of parenting or discipline. If they only knew the time we spend preparing to leave the house, talking about expectations, and practicing good behaviors. We’ve been on the waitlist for neurobehavioral testing for over two years, we are on another wait list for a pediatric sleep study, and the ENT to check her tonsils? Her appointment is six months away. 

It’s a lot of sit around and wait, no answers, survival mode kind of parenting, but you know what else it is? It’s a brand new kind of magical! It’s seeing the world in a totally different light than I’ve ever seen it before. It’s being needed and loved in the most unconditional way I’ve ever experienced. It’s teaching me, refining me, in areas I didn’t know I was lacking. It’s teaching my other children empathy, understanding, and to root for the underdog. It has made each member of my family less judgmental, more patient, and kinder to those around us. 

We are still waiting on our answers for Finlee, but she’s so much more than a list of things she struggles with. We’ve learned to hone in on Finlee’s strengths. She loves dance and really excels at it! She has a memory like a steel trap and can memorize facts about animals and dinosaurs like nobody's business. She can listen to a song once and know all the words! She can negotiate until she’s blue in the face and she often outsmarts me with her logic.

She loves to swim, to garden, and to find birds. She has NO fear, in a way that’s terrifying as a mother, but she makes me braver. She has NO filter, but she’s helped me find my own voice. She has taught me what it means to be an advocate and to fight for and trust what my mom gut is telling me. She is drawn to other kiddos who are struggling and she sets her struggles aside to help them to carry theirs. She’s an example to me daily and I’m forever thankful for the love and chaos she brings to our family, to our home, and to the world. If you find yourself the mother of a child with special needs, welcome to the most magical club there is! It’s okay to mourn the life you pictured, to have hard days and lose your patience, even to throw yourself a pity party, but I promise you that things are about to be more magical than you could have ever imagined. Embrace it and know that YOU are exactly the Mama your little one needs and together you can conquer anything ❤️

This article was written by Jessica Southfield. Find her on Instagram @afullnestdigest. 

1 comment

Thank you for writing all of this down!! Our son was born RIGHT before COVID, so for years everyone just said his speech was delayed due to lack of socializing. I hoped, but knew deep down it wasn’t. We are on a wait-list to get him formally diagnosed with autism, but it’s widely acknowledged now. I feel exactly what you said about people looking down on him. He has difficulty with going out in overwhelming situations, or getting tired or hungry can push him over the edge, and people think he’s a spoiled 5-6 year old (spoiler, he’s 3.5, but insanely tall). No one stops to think maybe I’m doing my best and so is he. I got judged at Walmart for picking him up to comfort him at checkout, because I was “coddling him” 🤦🏼‍♀️

Heather Cole November 10, 2023

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