A Magazine from Akron Children's
Every family is unique, and so are their health care experiences. In “The parent’s perspective,” you’ll learn about amazing patients from the people who know them best.
Harlow, a Down Syndrome patient, has received care from providers at Akron Children’s since birth.
Kat Finley and her daughter, Harlow, play outdoors — embracing all that life offers.
We learned Harlow had Down syndrome when I was nearing my third trimester of pregnancy. Multiple tests had left my husband and me exhausted from fear and worry, and my response was not calm or graceful.
I grieved. Hard.
One night, I lay in bed with endless tears streaming down my blotchy, snot-covered face. This wasn’t how I envisioned our life with our child. I didn’t want to spend my days sitting in doctor’s offices and going to therapies. I felt deep pain and grief, and a healthy dose of shame for feeling that way.
But not anymore. While I grieved what I thought I would lose with Harlow’s diagnosis, I never could have imagined the beauty my life would gain because of it. Over the past five years, the love she has taught my husband and me has been transformative. I wouldn’t change a single thing about her — especially her diagnosis.
In the months after she was born, we worked hard to make it through each feed, sleep and blood test to check her bilirubin levels, all without being admitted for every respiratory illness. I often wondered what her future would look like. Would she ever tell me she loves me or about her school day? Would she ever live on her own or hold a job?
But over time, as we found a groove, I realized that no matter what her future holds, we are here for it.
Now, Harlow is 5 years old. Our days boast the full spectrum of family life — celebrations, frustrations, appointments, community and joy. Harlow’s life is full of the things she loves: indoor track, swim lessons, summer camp. In turn, she fills ours with love, from making sure we have water and our phones to checking that the blankets cover our feet. She is beautiful, kind, charismatic and loved by everyone who knows her.
She’s reached incredible milestones, like going to school without Pull-Ups®, something I know many parents of kids with Down syndrome struggle with. Her energetic personality has earned her the loving nickname of “Stitch” from her sister — for the wild messes she leaves in her wake — something I never realized I would appreciate when I learned about her diagnosis.
I believe that there are always opportunities for our circumstances to be used for good. As a physical therapist in Akron Children’s NICU and Down Syndrome Clinic, I have the privilege to connect with other parents of children with Down syndrome. In my work, I try to bring a sense of peace, understanding and connection to these parents by letting them know that I’ve been there. I get it, and they’re not alone.
If I could give any advice to new parents of a child with Down syndrome, it would be to love them fiercely, advocate for them and take it day by day. You are about to have tough days, but many joyful ones too. You might also feel grief, like I did, and that’s OK. Because you’re also going to experience gifts that not many people do, and that is why we are the lucky few.
From inspiring stories, to medical miracles, the More childhood, pleaseTM magazine will make you appreciate those precious 6,574 days of childhood.
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