Updated: April 29, 2021
Originally Published: September 25, 2011
As the air grew thick and the numerous faces in the room morphed into frantic, wide-eyed versions of themselves, the physician placed her hand on my knee and reassured me, “Don’t worry, we collaborate with Make a Wish all the time.” In that moment, I realized that the past three years, four months, and 26 days filled with anxiety, endless therapy, and consultations with countless specialists had culminated in obtaining what I thought I desired – a diagnosis.
My daughter entered this world six weeks and four days early on a warm July evening, arriving with a fierce cry and an Apgar score of nine. That was the last instance she exhibited typical development. My precious daughter, my second child, never conformed to the norm. I vividly recall sitting in the hospital’s NICU, questioning if this was merely the beginning of a tumultuous journey for preemies; I was assured that my child would be perfectly fine, albeit a bit delayed.
HA! What a naive thought! She crawled at 11 months and took her first steps at 24 months; we’re still eagerly awaiting her first words. On her second birthday, we received the diagnosis of Cerebral Palsy – a manageable condition, I thought. It wasn’t degenerative, and with relentless effort, she would progress… and she did. Yet, I know that this growth will plateau soon.
On December 13, 2013, while eight months pregnant with my third child, I walked into a chaotic situation. With ten people in the room, including a social worker, I should have anticipated what was coming. There I stood, round and glowing, blissfully pregnant, attending my daughter’s neurology appointment with my sweet three-year-old by my side.
Then it hit me. BOOM, she has a genetic syndrome! BOOM, it’s degenerative! BOOM, no cures or treatments available! BOOM, her life expectancy is shortened! BOOM, it’s extremely rare, with no known research for a cure! BOOM, the unborn child in my womb faces a 25% chance of inheriting the same syndrome! BOOM, I can never again have unprotected intimacy with my husband! BOOM, my daughter is facing a dire fate! And the most shocking comment of all… “Don’t worry, we work with Make a Wish all the time.” Seriously? At that moment, a trip to Disney was the last thing on my mind.
Now, almost a year later, my daughter continues to thrive and make progress. My son was born shortly after that appointment at 36 weeks, healthy and free from the syndrome (a blessing I am grateful for every day). My husband and I are navigating this unfamiliar path, sometimes struggling but determined to move forward. Our eldest son is starting to recognize that his sister is different, and we’re addressing his questions as they arise. While we haven’t shared our situation widely, the few who are aware of our “Make a Wish” journey have been incredibly supportive.
So, what is the purpose of sharing this narrative? If I could make a wish, it would simply be to forgo the need to make a wish altogether.
For further insights into home insemination, consider checking out our post on Intracervical Insemination. Additionally, Make a Mom provides authoritative resources on this topic, and the Cleveland Clinic offers excellent information on Intrauterine Insemination.
In summary, the journey of parenting can often lead to unexpected challenges and revelations. As we navigate these uncharted waters, it is crucial to find support and understanding. My wish remains simple: to embrace the present, without the burden of future uncertainties.