SPEECHLESS & CONFUSED

Those were the feelings that overcame my body as I heard the doctor say, “ I am concerned for your baby and advise you to schedule a c-section” at our 37-week check-up. At that moment, I didn’t know that my daughter had a rare genetic disorder called Pfeiffer Syndrome, which would lead to numerous surgeries in her first year of life due to a prematurely fused skull. Only one in 100,000 people in the world are diagnosed every year; my Caliyah would soon be the chosen one. My blog will take you through my journey as a mother with a medically complex daughter and her living testimony. We will get to our current state, but I want to take you back to the moment I knew my life would not be the same.

Back to that initial doctor's appointment, I was so excited to see my daughter's face on the ultrasound, find out how much she weighed, and confirm that everything looked good for our upcoming delivery. I was not expecting or ready for the doctor to say I had high amniotic fluid and that I should see a specialist. I quickly learned that a doctor could be an expert in their field, but that doesn't always mean they can communicate tough medical news. She gave long pauses when looking over our ultrasound; said things like, "well, this is interesting." Words you never want to hear from your doctor. She made an insensitive comment that I am not quite ready to divulge, but will when the time is right. Let's just say that the appointment was very disappointing. She tried to protect my stress level and failed to paint the big picture of my daughter's future health complications. From that appointment, we thought my daughter had spina bifda and a potential brain issue due to her ultrasound remarks. We knew nothing of her abnormal head shape and other facial abnormalities. We just could tell by her energy that something was wrong, to the point where I needed to schedule a c-section. We found our answers in our next doctor's appointment.

We spent the next four days trying to get an appointment with a new doctor for a second opinion. It did not help that this was New Years' week. Those four days were filled with tears, worry, and so much stress. My husband, Rome, and I rang in 2020 with mixed emotions. We knew this year would bring us our daughter, but we also knew it would bring us a test of a lifetime. A test that very few have endured one that we didn't feel prepared for. I felt like someone halfway ripped a band-aid off and then just stopped.

My pregnancy had been so uneventful until this point. I had no morning sickness, no crazy cravings, passed all my tests and was working out pretty often. I was at that point where all the boxes were checked: nursery was decorated, the baby shower was done, diaper caddy was stocked. I was supposed to be at the phase where I am so big that I couldn't sleep, so anxious because I couldn't wait to see my little one's face. I was all those things. I did not get any sleep. I felt anxious, but that was because I needed answers. I cried myself to sleep worried about her health, thinking about all the surgeries she would endure, and mourning the motherhood journey that I felt I would be robbed of.

I am happy to be writing this now that my daughter is 11-weeks old because now I know that I wasn’t robbed of anything. I had this fairy-tale idea of what my life would look like as a mother, but I quickly learned I am not Princess Tiana (which is the theme of my daughter’s room). Fairy-tale endings don’t happen—this is real life. Life in all its forms is beautiful. I was mourning the life that everyone else had, but my life wouldn’t be extraordinary if it looked like everyone else. This is the life I want to share with you.