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Learning Patience, Perspective and Perseverance While Parenting a Child With Down Syndrome

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It started out as a total Woopsie Daisy! Our original plan was to wait two years after marriage before having children. When people would ask that question literally the day after we got married, we would confidently state that we still wanted time to be together without a child, to see the world and get to know each other as a married couple.

The December after our October wedding I was visiting my doctor’s office for another round of antibiotics for strep throat when I thought to myself, “I haven’t had my period for a while.” I took the test knowing there was no way I could be pregnant because I was on birth control and therefore untouchable! Heads up: birth control doesn’t work while on antibiotics (a fun fact we must have forgotten!) The test results came back positive, and while my husband was driving to work I excitedly called him and told him that he would be a father. He claims this was poor timing, yet I think it was just a fun start to his day. However you look at it, we were going to be parents a little sooner than we expected and we knew in our hearts there was a purpose for this.

Chloe in a tutu and head scarf.
At each doctor’s appointment we had the joy and privilege of seeing our little one’s heart beat, her fingers grow and her features develop. We heard a healthy heart and had no indication of what was to come because I was a mere 31, why should I be worried? We decided as a family to forgo all testing knowing that regardless of the outcome, our little baby would be ours and we would love her wholly!

Chloe with her parents.

Two weeks before she was supposed to make her grand appearance, she decided to grace us with her presence and bring along with her a little something extra. When Chloe was born, the midwife who delivered her had the hard task of delivering some news that was unexpected to a Mama who had just given birth without an epidural and a papa who witnessed it all. She delivered the news of the “markers of Down syndrome” and stated that without a genetics test she couldn’t be positive, but it was more than likely. I will never forget our midwife that hot August morning and the way she made us both feel that Down syndrome is not the end, it is the beginning of an incredible journey!

Chloe with a big grin on her face.

Please don’t get me wrong, life after that surprising diagnosis was not rainbows and butterflies. Those three days in the hospital and a couple of weeks that followed were some of the hardest moments of my life mixed with pure joy and utter exhaustion. I remember standing in the shower weeping uncontrollably asking God why it had to be us? Minutes later I would hold our little Chloe and weep in awe of the miracle of life.

I remember looking at my baby and questioning every little thing, wondering if it was typical baby issues or because of her Down syndrome. I recall friends coming in and out explaining that our baby was beautiful, that we were truly blessed and wondering if they were just being nice or if they really meant it? I was very tired, very nervous, very unsure and very thirsty (like all the time!) during the first few months of her life, but as I’ve heard from mamas who have been in my shoes before, “this too shall pass” and it did!

Chloe playing in the flowers.

Eighteen months have gone by and I find myself asking where the time has gone. When did she start crawling and giving sass for pictures instead of that cute toothless grin? When did she start using a spoon properly and find an interest in all things Doc McStuffins? When did I stop crying in the shower and doubting her cuteness?

There are moments in this journey that I’ve become so afraid she will never do certain things. I was afraid she would never crawl, and with a little bit of work and a whole lot of patience she is doing it. I was afraid she would never be able to stand, and she’s getting there, patience being the priority. One of the biggest things I have learned over these past months is the virtue of patience. If I can be totally honest with you, I think this is one of the many reasons why Chloe was placed in my life. I have a tendency to be ridiculously impatient and want to see greatness on my timeline. My timeline has been created by what the world sees as “normal” or “right.” My sweet Chloe girl’s timeline looks a little different, but it isn’t wrong. Chloe is perfectly Chloe. I am learning that these differences can either frustrate me or encourage patience that surpasses all understanding. Through Chloe’s life, I am learning to choose the latter.

Originally published: March 19, 2019
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