Unexpected Blessings: February 2011

Thursday, February 10, 2011


Before I had kids, I was fearless. Ripcord rides, reverse bungee jumping, parasailing, going to the top of the Eiffel Tower, cliff jumping, roller coasters – the bigger the thrill, the better. I had a sort of “to do” list in my lifetime, and I was bound and determined to cross off skydiving and hot-air balloon riding. Then I became a mom…and all of that changed. Forget jumping out of airplanes. It just wasn’t worth the risk of something bad happening to me and leaving my kids behind. And as far as the hot air balloon, just the thought of it sent my heart racing.

I don’t want to say I became a complete coward. After all, I was a mom. It’s just that when I had my son, the fears and “what-ifs” a new mom experiences overwhelmed me. Rushing him to the emergency room because he had a fever of 104. Checking on him a million times a night to make sure he was still breathing. Calling daycare from work just to make sure he was okay. It’s like the carefree spirit I had before had vanished. One scream, whimper, or loud cry, could send me into a panic.

However, it wasn’t until I had Augusta that I learned what real fear is. The kind of fear that brings tears to your eyes just from thinking about it. It’s what I felt when the doctor first told us our baby girl had Down syndrome. During the initial shock, my mind was racing. What will she be able to do? Can she ever get married and have kids of her own? Will kids tease her when she gets older? How will she learn to read? How will this affect her big brother? Is my marriage strong enough to endure the challenges of raising a child with special needs?

Just when I thought my life couldn’t get any scarier, I learned about the health risks associated with Down syndrome. And all of those things I feared after the initial diagnosis? Ha! They were nothing compared to the host of medical issues Augusta could face. Children with Down syndrome are at an increased risk of having a congenital heart defect, leukemia, hearing loss, hypertension, thyroid problems, vision loss, seizures, intestinal abnormalities, spine issues, and infections. It’s crazy to think one extra chromosome has that kind of power. In addition to the medical issues, kids with Down syndrome typically reach developmental milestones later. That means Augusta may have delays in crawling, walking, talking, feeding herself, and potty training.

When it comes to the developmental delays, I can handle that. Augusta will do all of the things her big brother does, just in her own time. But the thought of my baby girl having leukemia or some other life-threatening health issue? Unbearable. And just when I think there couldn’t possibly be anything scarier than all of that, I start thinking, “What if something happened to me? Who would love her like I do? Who would make sure she keeps all of her therapy appointments? Who would teach her how to walk, read, and swim? Who would look out for her best interests?” All of these questions leave me emotionally exhausted.

It wasn’t until one of Augusta’s first check-ups that I learned an invaluable lesson. I was voicing my fears to Augusta’s pediatrician when he said, “Kristan, it’s okay to love her and want to protect her. That’s part of being a mom. But at some point, you’re going to have to let go a little. You want her to be challenged and pushed…that’s how she’s going to learn new things.” When I first heard the words “let go” I thought it sounded harsh. Then I realized he was absolutely right. All of my fears were not only holding Augusta back, but me as well.

Augusta is two months old now. It’s been a few weeks since that initial conversation with our pediatrician about “letting go” and I must confess…I still get scared sometimes. I don’t think a mom can ever completely erase the fear she has for her children. But little by little, I’m trying to replace the fears and what-ifs with information and support. My husband and I have found a team of professionals we trust - her pediatrician, pediatric ENT, First Steps therapists, genetic specialist, social worker, and daycare teacher – and they are with us every step of the way. We have found other families of children with Down syndrome who are dealing with the same issues. We became members of the Down Syndrome Association of Greater St. Louis. And we have family and friends that continue to offer their love, support, and prayers. We may not be experts on Down syndrome yet, but we are learning as much as we can and trying to provide Augusta with the opportunities and experiences that will help her succeed.

Now that I spend less time worrying about everything that can go wrong, I have more time to focus on what is absolutely perfect. Like the adorable way Augusta stretches her arms out when I unwrap her swaddle blanket. The way she watches her big brother with eyes wide open and I just know she’s learning something new. How she pushes her cute little bottom up in the air during tummy time. The love in her eyes when she looks up at me during a feeding. How she burrows up on my chest during our nightly bubble bath. It’s all those beautiful little moments that make me wish I could make the time pass slower…to enjoy those moments for just a while longer…and make my kids not grow up so fast.

The hard truth is I don’t know exactly what Augusta’s future holds. Maybe she won’t take her first step until she is two. She may have to have hearing aids before she learns how to talk. It might take her a hundred tries before she can feed herself with a fork. Or she may continue to surprise us, just how she learned to roll over at seven weeks old and did tummy time for twenty minutes yesterday. We just don’t know. But what I do know for sure is this…I love her, she is my daughter, and I will do everything in my power to give her the life she deserves, a life full of love.

…So I read somewhere the other day that the theme park close to our home is getting a new ride this summer. It’s supposed to swing you more than 200 feet in the air and go as fast as 40 mph. It made me think back to my thrill-seeking days and it brought a smile to my face. Not because I couldn’t wait to ride it, but because I already have my adventure…and her name is Augusta.

Copyright © 2011 Kristan.