I Found My Purpose: A guest post

Many years ago, before I had children - even before I was married - my mother once wondered aloud if I would be so career driven that I'd never slow down enough to have children.

At the time, her comment surprised me, not because I was particularly excited about the prospect of being a mom, but because I always just assumed I would be one day. It was Step 3 of The Life Plan (Step 1: Education/Job. Step 2: Meet a Man and Get Married. I'm nothing if not conventional.) I earned a degree in electrical engineering, went to work for the large electric utility in my region, and married my husband, also an engineer, in 1996. Six years later, married, working, but without children, I began to feel that my chosen career path wasn't what I wanted. I spent a lot of time considering my interests, reflecting on my childhood and what I had wanted to do When I Grow Up (be a lawyer) and considering what my parents thought I'd be When I Grew Up (be a lawyer) and what I considered doing but discarded when I became an undergrad (be a lawyer). When I became pregnant with Sarah Kate, I decided that if ever I was going to go to law school, it was time. I asked advice of a lawyer colleague of mine. I gathered my transcripts, studied my options, and waddled into the LSAT. Sarah Kate was due in March; I planned to start law school at the University of Alabama in August.

But then the world turned upside down.

My tiny baby was born two and a half months early, weighing only two and a half pounds - small even for her gestational age. She sailed through the NICU, and we began to breathe easier. All of the books detailing the disabilities that preemies were susceptible to were wrong! She was going to be okay! Three years earlier, our first child died at 20 weeks due to triploid syndrome, so we believed we had a dodged a bullet.
A few months later, Mr. Andi changed jobs. We moved to a great city without an accredited law school within a reasonable driving distance. My dream of being lawyer was dashed, though at the time I barely thought of it at all, because I was focused on Sarah Kate's needs. Despite her easy ride in the NICU, something was wrong. She didn’t sit when she was supposed to, and her legs didn’t want to bend when they needed to, such as when she was placed in a high chair. Our pediatrician referred us to Early Intervention, and everyone kept using the term “hypertonia” to describe her. I researched it online and kept coming up with information about cerebral palsy. In my mind, kids with cerebral palsy had major physical disabilities, intellectual disabilities, and visible deformities, so I kept looking for some other way to explain what was going on with Sarah Kate.

A child with cerebral palsy was not part of The Life Plan.

One day when Sarah Kate was about three, Mr. Andi and I were discussing what we believed God's purpose for each of us was. I struggled to identify it, because though I believed with every ounce of my being that I was exactly where I was supposed to be, doing exactly what I was supposed to be doing, I also had a nagging feeling that I was missing something. I didn't know what it could be, but in my gut I knew there was more for me to do. Just before Sarah Kate entered kindergarten, in 2008, I accepted a volunteer position on the governing board of a non-profit women’s membership organization. When I first said "yes" the position was essentially the national secretary. However, a bylaw amendment changed the job description to be heavily focused on communication. Since that time, I've had to learn a tremendous amount about writing, social media, graphic design, public relations, and branding. I know a lot of people don't understand why I would devote so much time and energy - for free! - to a sorority, and there's not enough room on Ellen's blog for me to say what I'd want to say in order to help you understand. Looking back, what I thought would be a pleasant diversion when Sarah Kate went off to school and an opportunity for me to exercise my mind and set goals for myself - something I'd struggled with since electing to be a stay-at-home mom - actually was a springboard for the work I was meant to do.
Two years into my time on the board, Nathan was born. He was a surprise in more ways than one - an unplanned pregnancy, a premature birth, and an extra 21st chromosome.

Our world that had finally begun to right itself turned upside down again.

This time, though, I was ready in a way I couldn't have expected. Although I didn't "know" Down syndrome, I knew disability. I knew early intervention. I knew awkward conversations with family and strangers. I knew it wasn't fair that both of my children would be born with disabilities, but I also knew that life isn't fair, and that while you can't always control what happens, you can always control how you react to it. Mr. Andi’s mantra – adopted as something akin to our family motto over the years – is “Choose your response.” Mr. Andi was the first to learn that Nathan might have Down syndrome. He had followed the baby to the nursery and overheard the nurse speaking softly on the phone. A short time later, the pediatrician entered my recovery room, looking anxious. I won’t say that I didn’t feel any fear, because I did, but I was surprised at how calm I was. I had spent eight months fearing the worst – refusing to set up the nursery in case something happened, and when I finally did I saved all of the packaging so I could send things back if the situation warranted.

In that light, Down syndrome didn’t seem all that bad.

Mr. Andi, on the other hand, was devastated. He had dreamed for years of a son, and there was probably a small part of him that believed we were “due” a typical child. He descended into a funk that struck more fear in me than the diagnosis. I felt a strong need to protect my newborn son from his father’s disappointment. I remember lying in the hospital after my C-section on the second night after Nathan was born and deciding that I HAD TO SEE HIM. He was still being closely monitored in the nursery, and I walked down the hall, pushing my IV pump as I moved carefully and deliberately, protecting my incision. He was mine, and I knew that I would fight for him, no matter the cost. The next morning, a deacon from our church came by to see us, and to pray with us. Within the hour, Mr. Andi threw off his depression. His demeanor changed completely, and he never looked back. He remembered his mantra, “Choose your response,” and decided it was time to live up to it. Once upon a time, I wanted to be a lawyer. I'm not now, and it's unlikely that I ever will be. But what IS a lawyer, really?

An advocate.

Everything I write on my blog is a form of advocacy. Sometimes, it's an overt action in defense of a position (or even, occasionally, an offensive mounted against those who would devalue children with disabilities). Often, it's spreading awareness about causes that touch the special needs community. Other times, it's by writing ordinary things about our extraordinary life - stories that demonstrate to the world that we are more alike other families than we are different. There will always be someone more successful than I am who writes better than I do with a larger following than I have. But there will never be another person who can tell my family's story in the way that I can, and my family has a story that is worth telling. A story that changes people's hearts. A story of beauty in imperfection. A story that needs to be told.

I have found my purpose.

Sarah Kate, Nathan


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Andi is an ordinary mom with extraordinary kids, living an ordinary/extraordinary life - a daughter with cerebral palsy, a son with Down syndrome, an adventurous husband, a wild Westie, a camera, and a worn out pair of running shoes. You can visit her blog, Bringing the Sunshine and find her on twitter.