Some dates are engraved in your memory: birthdays, anniversaries, deaths, etc. The day I found out my unborn Daughter had Spina Bifida was a date I will never forget.
June 16, 2011 started off as a hectic day. My 8 month old son woke up with a cold, so I did what any first time Mom does when their baby has a cold; overreacted and rushed him to his primary care physician. At the time, I was 17 weeks pregnant. After leaving the doctor with my son, I decided to move my ultrasound up from the following week so I wouldn't miss another day from work. I called my husband to confirm he was okay missing this appointment, dropped my son off with my mother and headed to my ultrasound.
I walked into American Radiology eager to learn the sex of my baby. Four months prior my Grandmother passed away. In honor of my grandmother, we decided that if our baby was a girl, we would name her Taylor, my grandmother's last name. The tech started the ultrasound, I remember thinking this is really taking a long time. She highlighted the shape of the fetus head, it was shaped like a lemon (common with spina bifida). I remember the tech spending a long time examining the fetus' spine (pay attention on why I say fetus). To me the spine looked like a zipper and I noticed a perfect bubble (this is where the spine opened up and the spinal nerves where in the bubble), but again paid it no mind. After a long two hours, I asked the tech "is everything okay?" she said she couldn't answer any questions, only the doctor. Then finally, the news I had been waiting for "It's a Girl!" I shed tears of joy, my baby finally had a name, Taylor Marie Thomas to me she was no longer a fetus, she was my daughter.
I was on cloud nine. Before picking up my son, I stopped at Hallmark to pick-up "It's a Girl" balloon for my mother and to find something to give my husband as hints that we were having a girl. After I got what I came for, I headed to my mother's house. When my mother saw the big pink balloon she screamed so loud of excitement that I am sure her whole neighborhood heard her. She also cried tears of joy. In the middle of her celebration my cellphone started to ring. The caller ID said "Restricted" so I ignored the call. By the fourth "restricted" call I decided to answer. It was my OB-GYN, his tone was dry and lacked any emotion.
Doctor: "You had an ultrasound today"
Me (cheerful): "Yes, I had to take my son to the doctor and didn't want to miss work next week so I moved it up. Sorry I didn't call you to tell you I moved it up."
Doctor (dry): "The fetus has severe brain and spinal cord damage. The fetus has Myelomeningocele Spina Bifida. I recommend a medial abortion. We have a tight window because you are 17 weeks pregnant"
Me: "What? What is that? Are you sure?" (sobbing and confused)
Doctor: "Yes. The fetus will have a poor quality of life!"
As you can imagine my world had turned upside down. I felt like I couldn't breath. My beautiful baby girl Taylor was now being called a fetus. From the day that I found out I was pregnant she was my baby, never a fetus.
I did the worst thing you could ever do; I ran to my mother's computer ignoring her questions and Googled "Spina Bifida". The internet showed me pictures that all confirmed what the doctor just said. I needed to get home, I needed to be alone and think. I had to drive home with a broken, confused heart. I keep saying to God, "Why me?" - I wasn't a bad person. Why do this to my daughter? I promised God if he made this right, I would be in church every Sunday.
I had to pull myself together, my husband still had no clue. I will never forget his face. I could see the hurt in his eyes, but he was calm, he was strong. He said, "this means nothing and doesn't make a difference." In that moment, I never loved him more! He still didn't know we were having a girl, he just knew WE WERE HAVING A BABY.
June 16, 2011 became our "Diagnosis Day". A date that will always be remembered.
One of the hardest parts of this journey was the pregnancy. I spent four months not knowing what challenges my daughter would face. No child with spina bifida is the same. So I prepared for the worse and prayed for the best. What I did learn was not to question God. When I was crying saying "Why me?" God's response was "Why not you!"
On December 10, 2011, Taylor entered this world the way she lives her life: on her own terms, fighting any challenges and winning. She lost a lot of blood and had surgery four hours after birth to repair her spinal cord. I remember the doctors saying she would have a feeding tube and would be kept asleep for 72 hours to give her body time to recover. She pulled the feeding tube out 12 hours after surgery and was wide awake and alert. My Baby Girl had a battle to fight. My mom gave her the nickname "Lola" after whatever Lola Wants, Lola Gets!
Taylor spent almost the first year of her life in a leg cast to correct her club feet, she has bladder/kidney issues, has to be cathed every 3 - 4 hours, has no control of her bowels, has had 9 surgeries so far, goes to therapy every week and has no feeling below her knees; She uses a wheelchair to get around. With all that being said she is also a happy 5 year old who loves to swim, races in her wheelchair, feisty, very smart, counts in Spanish and loves, but gives her brother a hard time and has amazing friends. We have smiled and cried more tears of joys that outweigh any of the bad moments. Taylor wants to be a doctor and model! Doc MuStuffins is her hero!
We are raising Taylor to be independent. Taylor knows she is has Spina Bifida and explains it to her friends when they ask why she is different. She sometimes struggles with understanding why she doesn't walk or wear underwear. She says she is "different" and I tell her she is one of a kind. God made her special, everyone else looks the same, but she is cool.
Raising a child with Spina Bifida has not been easy, we have a lot of medical debt, struggle with finding a home that fits Taylor's needs, struggle with taking time off of work when we need the pay, but we have NO REGRETS! We are grateful we were chosen to have such a beautiful little angel. We are also grateful for the support of my mother who helps us with Taylor and Casey Cares (an organization that supports children with critical illiness). Taylor motivates me to be better. She does not complain, she always has a smile on her face. Taylor can warm the coldest heart. I thank God for our blessings: Our Children. Our son is amazing with Taylor. He makes sure she is always safe, takes her medicine and is happy.
I tell any pregnant mother who has just had her "D-Day" to trust in God. This journey has not been easy, but it has been worth it!
Taylor is kicking Spina Bifida's butt and is my super hero!