As I sat in that cramped room, surrounded by ten people who suddenly felt like cartoon characters—eyes bulging, voices rising—the doctor placed her hand on my knee and said, “But don’t worry, we work with Make a Wish all the time.” That was the moment when it hit me: after three years, four months, and 26 days of relentless worry, therapy, and a parade of specialists, I had finally received what I thought I wanted—a diagnosis. Little did I know, it wasn’t the gift I had hoped for.
My daughter made her grand entrance six weeks and four days early on a July evening, howling loudly with an Apgar score of nine. That was the last time she did anything that was considered “normal” for her age. My sweet little girl, my second child, was never going to fit the mold. I vividly remember sitting in the NICU, asking if this was the beginning of a challenging journey with a preemie. The doctors assured me she would be 100% fine—maybe a little delayed, but ultimately fine. HA! What a joke! She crawled at 11 months and didn’t walk until 24 months; we’re still waiting for her to start talking. On her second birthday, I was told she had Cerebral Palsy. “Phew,” I thought. “I can handle CP.” It wasn’t degenerative, and if I pushed hard enough, she’d make progress. And she did… until she won’t anymore.
Fast forward to December 13, 2013. I was eight months pregnant with my third child, blissfully unaware of what awaited me at my daughter’s neurology appointment. I walked into a chaotic scene—ten people were crammed into the room, including a social worker. I should have sensed the storm brewing. There I was, round and cheerful, with my three-year-old daughter, and then it happened: BOOM, she has a genetic syndrome! BOOM, it’s degenerative! BOOM, there are no cures or treatments! BOOM, she will have a shortened lifespan! And the cherry on top? BOOM, the baby in my belly has a 25% chance of having the same condition! BOOM, I can never have unprotected relations with my husband again! BOOM, my daughter is going to die! And then, the doctor’s parting words: “But don’t worry, we work with Make a Wish all the time.” Really? I didn’t give a flying flip about a trip to Disneyland.
Now, almost a year later, my daughter continues to make strides, and my son was born healthy, without the syndrome (thank goodness!). My husband and I are navigating this uncharted territory, sometimes feeling like we’re drowning, but we’re making it work. Our oldest son is starting to grasp that his sister is different, and we’re addressing his questions as they come. We haven’t shared our “make a wish” secret with the world yet, but those who know have been incredibly supportive.
So, what’s the point of this tale? If I could make just one wish, it would simply be to not have to make a wish at all.
If you’re interested in learning more about home insemination, check out our other post on intracervical insemination. Whether you’re navigating your own fertility journey or need some advice, Make a Mom is an authority on related topics. For even more information on pregnancy, UCSF’s Center is an excellent resource.
Summary: This article shares the raw and honest experience of a mom navigating the complexities of her daughter’s health diagnosis, revealing the challenges and unexpected moments of humor that come along the way. Ultimately, her greatest wish is simply to not have to wish at all.