The Most Important Thing You Can Do After Your Child's Diagnosis

As I became educated on my daughter’s genetic disorder, Turner syndrome (TS), the more I worried about the many possible health, learning and social issues that my daughter could have. Reflecting back, I realize I worried about so many potential “problems” that never actually happened. I worried she would have a difficult time learning in school. I worried she wouldn’t have friends and would get bullied. When I found out about more heart issues, I never fully relaxed until she had surgery years later to repair it. There were times I was frozen with anxiety because of the stress. Sounds exhausting, doesn’t it?

It is so hard when someone you love is diagnosed with a lifelong health condition. When it is your beloved child, it can initially feel devastating. I know I was completely blindsided. I missed some of the blessings along the way because I was so worried. My biggest piece of advice to parents of a newly diagnosed child with a serious health condition is to become as educated as possible on their diagnosis, and most importantly, enjoy your child along the way and learn to live in the present moment.

Stay present. What does that mean exactly? I see this phrase all the time. It’s become a buzzword of sorts. For me, instead of dealing with the current health issues and enjoying my beautiful daughter, I worried about all the possible diagnoses my daughter could have. If I could turn back time, I would have lived for today, instead of living in fear of the future.

Oh, I did a lot of the right things too. I researched and read everything I could find. I reached out to an advocacy group and attended their annual educational conferences. I found other parents who could understand what I was feeling through online support groups.

I did enjoy her. Early on, she had an easy-going personality and was a joy to parent. I tried to make her doctor appointments fun by telling jokes to keep her smiling. We laughed when we discovered we had left one of her Dr. Seuss books at an appointment two years previously. We celebrated when she had good check-ups. Sometimes there were some tears (usually mine), which would always make her laugh.

I did appreciate her successes in a way that I never could with her siblings. When I would watch her play sports, I would get teary eyed picturing her in the PICU after her first open-heart surgery as a baby. When I complained about how many kids she had over for get-togethers, I knew we didn’t have to worry about social issues. When she won a college scholarship, I thought about all the learning disabilities she could have had. So many worries, and so much time wasted.

In the end, my daughter was my best teacher. She has never let her diagnosis define her
or stop her. She lives in the present moment. Your life will be forever altered when you get the news that your child is sick, but there is also so much joy in watching
your child grow up.

So please, stay present as much as you can, and take time to enjoy your child.