Vivian & her Journey with Jordan's Syndrome

By Stacy Kelley

We welcomed our sweet baby girl Vivian into the world 7 years ago. As I got closer to delivery, I convinced myself that I was okay with whatever happened during labor as long as everyone was healthy. I didn’t want to disappoint myself if all the boxes on the to do list weren’t checked off. 24 hours of labor leading to an emergency c section opened my eyes to the list of expectations I had already secretly placed on myself before even becoming a mom. Despite the difficult delivery, my husband and I were elated to discover our baby was a girl (surprise) and introduce Vivian to our family. I can remember a friend saying “welcome to motherhood” and I was so excited to be part of this new club.

Around three months old, my husband and I realized that Vivian was missing milestones. I felt like a failure and put blame on myself. It must be that glass of wine I had, the hot bath I took, the strep throat I had. Maybe I didn’t drink enough water or held my cell phone near my belly too much. I couldn’t deliver her naturally. I can’t breast feed her right. What on earth am I doing? I’m not fit to be a mother.

Others started to notice something was off. Friends with kids of their own didn’t want to share milestones in fear that my feelings would be hurt. Some said nothing about her delays, and just pretended everything was okay. Others didn’t know what to say, so they would say something to make themselves feel better like “she’ll get there.” Some thought I was simply overreacting as a first time mom. I quickly felt left out of the motherhood club I was so excited to join.

After years of searching with no answer, the final test we were willing to do was whole exome sequencing. 6 months later we received a phone call: “We found something on the test, but we don’t know what it means. It is called PPP2R5D. There is a Facebook page that you should join.”

Whaaaat? Did our geneticist just tell us to join a Facebook page to learn more about this PPP whatever it’s called? We were the 40th family in the world to join this page. Here, we connected with other families affected by this rare condition known as Jordan’s Syndrome. The moms here wanted to know all about Vivian, all about me, the good and the bad. Together, we celebrate each child’s achievements regardless of if our own child reaches that milestone because it’s not about comparing. It’s about loving and supporting one another.

I certainly didn’t enter motherhood planning to be part of a special needs mom tribe. In addition to the mom role, I’ve gained the role of physical therapist, speech therapist, occupational therapist, ABA therapist, intervention specialist, and so on. Some days are hard, really hard. Our calendar is filled with appointments rather than play dates. Our contact list has more therapists and doctor’s office numbers than friends. I’ve become an advocate for not only her, but others like her as well. In this rare world, I know more about my child’s condition than medical professionals do. She has taught me perseverance, patience, kindness, appreciation, deeper love, dedication, devotion, and resiliency. Just as much as she has needed me, I have needed her to appreciate what truly matters.

Have you shared a similar journey? Are you feeling left out of the mom club because of your own set of expectations? Have you found your tribe? Maybe it’s not the tribe you wanted to be part of, but we so desperately need each other for this journey. We didn’t become the moms we thought we would be in the labor and delivery room. We became the moms our children needed us to be. Be proud of how far you’ve come. You are bold, courageous, fierce and strong! Never give up. Together we can. Together we will.

Follow Stacy and her beautiful family @stacy_kelley13