Just after Katie’s diagnosis I read a website written by parents reflecting months (or years) later about what they wished they had known the day they received their child’s Down syndrome diagnosis. Find it here from the National Down Syndrome Congress. No specific quote stuck in my mind but the general message that I remember was: worry less, she will look like you, there are tons of similarities and only a few differences, life is full of joy, the love is deep.
Worry less: Once I really started reading about Down syndrome I didn’t worry about the Down syndrome itself, adults with Down syndrome can hold jobs, drive, and get married. Some adults need assistance but not intensive intervention. However, I did worry quite a bit about the possible health complications. The health problems faced by each individual with DS are a wide spectrum, a few face many, a few face none, and most face one or two. Katie has only faced a heart defect which was fixed surgically. Katie could develop other problems down the line but that could be said for any child. We will watch Katie as we watch Ellee and deal with the future as it comes. There is no need to worry any more than a parent worries about every child.
She will look like you: I hear this regularly and it makes me so happy. Ellee’s looks favor my husband and Katie’s looks favor me. Katie has 47 chromosomes but they are all from Mike and me. She has our looks, our genetic strengths and genetic weaknesses; just like Ellee does. She is our child and we get to walk her life’s journey by her side and see who she will become. She is not ‘something different’ from us; rather, she has a little bit extra!
There are tons of similarities and only a few differences: So far with Katie the only difference beyond a few superficial physical characteristics (beautiful almond eyes, crease in the palm of her hand, bent pinkie fingers, smaller body, and flatter facial profile) is her heart defect. Beyond that, she is a baby and does EVERYTHING a 6 month old baby does. She is healthy, strong, and happy. She rolls around the room, studies faces, plays with toys, sleeps a lot, eats a lot, giggles, blows raspberries, babbles, chews her toes, sucks her fingers, and cries when she needs help.
Life is full of joy: We have a happy, healthy, cuddly, baby who looks deep in our eyes, pats our cheek, smiles and nuzzles our neck. Every single day is full of joy.
The love is deep: The Down syndrome has in NO way changed how we love Katie. We love her the same way we love Ellee, the same way every parent should love their child, with our whole heart unconditionally. Katie loves us the same way every baby loves their parents, with her whole heart unconditionally.
A year later, a wonderful year later, I would not change anything about Katie, I would not change anything about how we handled this year (except worrying less!). I cherish every day and look forward to the future with our little family.
