A black and white checkered notebook on my end table contains much more than paper. The pages have heart felt prayers and concerns from 15 years ago. I was a new mom at home with a newborn with Down syndrome, congestive heart failure, and an AV canal heart defect. The diagnoses were a shock after she was born, and the notebook reflects a mom's heart that was muddled with fear and faith of the future.
When I came home from the NICU with Jaycee, I literally brought home dozens and dozens of articles, pamphlets, books, and handouts. One book described what parents could expect with a Down syndrome diagnosis. Against the advice from other parents, I read the book cover to cover. It overwhelmed me, just as the other parents foretold that I would be if I consumed the book in that manner.
The book guided my prayers early on. Everything in the book that scared me made its way onto my prayer list for Jaycee. Constipation, celiac disease, leukemia, thyroid disorders, atlantoaxial instability, intellectual disability, etc. were all things that I prayed through after reading the book.
When I held Jaycee, who was dressed in the pinkest preemie sized clothing her grandparents could find, I had difficulty picturing her future. I was extremely fearful of the intellectual disability aspect. I wondered if she would be able to read or attend any type of regular education. I was afraid that she wouldn't be able to speak clearly. I prayed she would have a strong mind and learn things quickly. I prayed her abilities would be much more than her struggles.
It's strange to look back over these prayers, thoughts, and hopes for the future. Some of the things I prayed about thankfully never became an issue with Jaycee. Other things I prayed about and feared, quite honestly, ended up happening.
Her intellectual disability was far from mild, and she has needed multiple special supports in school. Simple addition is still hard, but we're grateful she can count to ten. She was nonverbal for several years before developing speech with multiple errors. After years interpreting signs, grunts, and gestures, we were thrilled with any attempt at a word she made. Hearing her voice was gift and knowing her thoughts a treasure. Her health was poor for many years, not from things predicted in the book, but from undiagnosed lung issues that Mayo Clinic finally discovered.
At the start of my parenting journey with Down syndrome, I saw all the potential negatives and wondered how I could navigate them. I wanted it to be easy, for her or for myself-it's not entirely understood. Some of my fears have happened, yet it has been okay. Our family has walked through every success and challenge together. It hasn't always been easy; there are some hard days even now. Still, my daughter is my daughter. I love her fiercely. Her inability to add 3 + 5, read books past a second grade level, speak in clear sentences, or be independent with her daily care is our norm. As she has grown, we have adjusted to her needs. In the beginning, I was trying to come to terms with a lifetime of potential issues when I should have taken it one day at a time.
There is a wisdom that comes from living this life out. In 2006, I only knew in part (1 Corinthians 13). The things I read or saw often created fear, but it didn't need to start off that way. It's hard to describe our lives in balanced way. It's even harder to communicate that to outsiders trying to lean in.
Over the years, I have been invited to participate in a few online surveys about parenting a child with Down syndrome. More than once those surveys have contained the question: Would you take away your child's Down syndrome if you could? Yes No
On one such survey, I moved my curser back and forth from yes to no contemplating my answer. After much debate, my response instead was to exit out and forget the survey. That wasn't a yes or no question. How foolish of those investigators to consider that a fair question! That required an essay response.
I know one important thing: I choose my daughter. Jaycee would be an entirely different person without her Down syndrome. I love the Jaycee I know. I would choose her a thousand times over.
March 21 is World Down syndrome day. This is a day to celebrate and honor the lives of those with Down syndrome. Today, I reflect on how much I've grown as a parent, how strong our bond is, and how much love exists between Jaycee and our family. That stuff I worried about years ago seems foolish now. Yes, I understand where my head was at during that time, but I was focused on the issues and not the person with a God-breathed soul entrusted in my care.
Yes, I choose Jaycee. The girl who loves nail polish, jewelry, and pink. She's usually sporting a big bow or a flower clipped in her hair. She drives me crazy with her youtube videos sometimes, but I have a depth of knowledge about the Ninja Kidz and Kidz Bop thanks to her. No one loves her cousins as much as she, and she always mentions them in her prayers. Jaycee is creative with nicknames she has dished out over the years, and the whole family ends up using them too. She's kind and gentle until it's time for a blood draw or a shot. Somedays she's thrilled to go to school, and other days I beg her to get on the bus. When she really enjoys a meal I cook, she hugs me and says "Thanks mom," before commanding her brother to hug me too. (He obliges.) Of course, I choose her.
