Imagine giving birth to your first child and waiting for the excited declaration -- “It's a boy!” or “It's a girl!” -- but instead, the doctors whisper to one another. Imagine hearing that they're unsure of the sex of your child. Here, one mother shares her story as a parent to a child with CAH.
As an expectant mother, I aimed to do it all perfectly. I was ready to be the best in every role; wife, mother, preschool mom, working mom, breastfeeding mom, sports mom and more. As a classic overachiever, I had a solid plan of how I was going to juggle authentic happiness with my family and keep up with the Joneses at the same time.
While I thought my plan was fool-proof, nothing could have ever prepared me for the first few minutes of my first-born child’s life when I saw the doctors whispering about my baby. Nothing could ever compare to the knot that formed in my stomach when the doctor told me they weren’t sure of the gender of my child. No words can ever describe the emotion I felt when having to relay the news to grandparents waiting to meet their first grandchild.
The life that I had planned, with a year of flawless “firsts” for my baby, would instead be filled with doctor’s visits, hospital stays, endless blood draws, fear, worry and an overwhelming feeling of the loss of control.
My daughter has Congenital Adrenal Hyperplasia (CAH). It is a rare and life threatening genetic disease that affects the production of several vital hormones that are necessary for life. With each week my husband and I drew strength from learning more and more about the disease. We scheduled blood draws at consistent times. We pored over their results and read books to understand the medication dosing and how they relate. We found support groups of parents of children with CAH. We administered medicine religiously eight hours apart as prescribed.
But while I focused on logistically managing CAH, I lacked in allowing myself to feel the impact on my new family’s life emotionally. I began to evaluate my life from the outside, and by the end of the year, what I was able to see so clearly was the strength of my child. All along while the topical issues associated with having a child with a chronic disease were so dominant in my mind, my child was learning, growing and flourishing just like every other child, even with all the challenges she was encountering. I looked at my child, so brave, so happy and so innocently unaware of the trials that lie ahead. She was unaware of the idea that her life would be challenging – unless, I myself taught her that idea.
With this epiphany, I turned my worry over not being able to give my child the life I had planned, into passion for turning life with a rare disease into an empowering enigma for my child. I would assist my child in leading a happy and healthy life by helping her gain the skills to keep herself physically healthy, establishing her as a partner in her care and self-advocate for her needs and instilling confidence in her to manage the disease mentally. I give her all my bravery and strength, and I send her into the world to conquer all of her dreams. This disease will not hold her back; it will push her forward.
Five years and two more kids later, we’re now a home with two children with a rare disease and one with anaphylactic food allergies. We are raising our children to prioritize their disease without allowing it to mask their hopes. Our lives are impacted dramatically by CAH, but it doesn’t define who we are as a family. We are not caught up with keeping with the Joneses – we are defining living an authentic, honest life focused on loving others for who they are and spreading kindness.
My girls are dependent on two medications to replace the lost hormones and require increased amounts when ill or injured. They are closely followed by endocrinologist and without proper treatment are at risk for an adrenal crisis which can cause shock or death. But my girls are not Congenital Adrenal Hyperplasia – they are Vivienne and Scarlett – and they are a force to be reckoned with.
Colleen Geletko lives with her three children and husband. She works as a publicist, marketer and serves as an advocate for her children with a rare disease and for all families who suffer from food allergies. She enjoys exploring city neighborhoods with her family, mentoring students and young professionals and volunteering her expertise to nonprofits.