Updated: April 29, 2021
Originally Published: September 25, 2011
As I sat there, feeling the walls close in around me and the ten people in the room shifting into frantic, bug-eyed caricatures of themselves, the doctor placed her hand reassuringly on my knee. “But don’t worry, we work with Make a Wish all the time,” she said. In that instant, I realized that after three years, four months, and 26 days filled with anxiety, therapy, endless specialist visits, research, tests, scans, and doctor consultations, I had finally obtained what I thought I wanted—a diagnosis. But little did I know, I didn’t actually want it at all.
My daughter arrived six weeks and four days premature on a warm July night. Her first cry echoed through the room, and she received an Apgar score of nine. Unfortunately, that was the last moment she followed the typical developmental path. My sweet little girl, my second child, was anything but ordinary. I vividly recall sitting in the NICU, questioning whether this was the beginning of a tumultuous journey. I was assured that my child would be perfectly fine, just a bit delayed. HA! What a laugh! She crawled at 11 months and took her first steps at 24 months; we’re still waiting for her to speak.
On her second birthday, I was informed that she had Cerebral Palsy. Phew! I thought I could manage that. It wasn’t degenerative, and if I pushed hard enough, she would make progress—and she did! But I knew that wouldn’t last forever.
Then came December 13, 2013. Eight months pregnant with my third child, I walked into a chaotic scene for my daughter’s neurology appointment, cherishing the moment with my cherubic three-year-old by my side. Then it hit me:
- BOOM! She has a genetic syndrome!
- BOOM! It’s degenerative!
- BOOM! There are no cures or treatments!
- BOOM! She will have a shortened lifespan!
- BOOM! It’s extremely rare—no known research exists for a cure!
- BOOM! The baby I’m carrying has a 25% chance of having the same syndrome!
- BOOM! I can never have unprotected sex with my husband again!
- BOOM! My daughter is going to die!
And then, the ultimate kick in the gut: “But don’t worry, we work with Make a Wish all the time.” Seriously? At that moment, the last thing I cared about was a trip to Disney.
Flash forward almost a year later. My daughter continues to make strides, and she’s doing remarkably well. My son was born shortly after that appointment at 36 weeks, healthy and free from the syndrome (I thank my lucky stars every day). My husband and I are navigating this unfamiliar terrain, sometimes struggling, but we’re pushing through.
Our eldest son is starting to grasp that his sister is different, and we’re addressing his questions as they arise. We haven’t shared our “wish” journey with many people yet, but those who know have been incredibly supportive.
So, why do I share this? If I could make a wish, it would simply be to never have to make a wish at all.
For more on navigating the journey of parenthood, especially through challenges, check out our other blog posts like this one. If you’re looking for resources on pregnancy or home insemination, Mount Sinai provides excellent information, and for couples exploring their fertility journey, Make a Mom is an authority on this subject.
Summary:
This heartfelt account reflects on a mother’s unexpected journey through her daughter’s diagnosis, highlighting the emotional turmoil and challenges faced along the way. Ultimately, the mother expresses a desire to forgo the need for a wish altogether while continuing to navigate life’s complexities with resilience and support.