Amanda Whitley Photography | In her own words...

In her own words...

March 17, 2014  •  1 Comment

I wanted to present this blog in a different way. Hearing from the mother of a child with an illness as well as from the daughter herself. This mother and daughter are much more than what meets the eye. They are a team. Neither allowing the other to be defeated. So, in their own words...  


My Life As Mom


"I found out that I was pregnant with my first child at age 19. My husband and I was so excited. At 16 weeks I went into the Dr. for my first ultrasound. We were just like most everyone couldn't wait to find out if we were having a boy or a girl. The ultrasound tech was very quiet as she worked. Then she ask me if I was familiar with Spina Bifida. I had no idea what she was talking about. She then told me she had to get the Dr. My heart sunk to my feet and I felt so sick. I knew something was very bad wrong. As me my husband and my mother sat in the room it seemed like an eternity before the Dr. came in. He then proceeded with the ultrasound and that is when we got the devastating news that our precious bundle of joy had Spina Bifida. He didn't tell me anything more. But he wanted me to go to Birmingham to meet with a team of Dr.'s as soon as possible. That was the longest two weeks of my life waiting to see exactly what we faced. My first appointment was at Kirkland Clinic with the ob/gyn. There they did an ultrasound and Amnio test. The diagnosis was confirmed our child had Spina Bifida. But still we didn't know if it was a boy or girl. We were then sent to Children's hospital to speak with a Neurosurgeon. That Dr. told me nothing positive. He told me my child had a 5% chance of ever walking talking sitting or even feeding itself. Then he recommended to me that I should consider abortion. We were all crushed! I prayed and prayed and prayed some more. Because I knew only God knew what I needed to do and I also knew that he had a reason for giving me this child. We came home and talked things over and my answer came very quickly. I decided that if my child had even 1% chance of survival I would do everything in my power to give him or her the best life I could. It was two weeks later I received the call and the amnio confirmed we were having a GIRL! I was young and scared to death but I was also determined to do this.




On April 14 1997 I woke up very sick. I assumed it was a stomach virus since everyone seemed to have it. Later that day my mom finally talked me into going to the Dr. Good thing she did. I was in labor and had to deliver in Birmingham. I was first sent to Decatur General and monitored. The Drs. didn't know if I could make the trip because the babies heart rate was way too high. I remember being scared I was gonna have to deliver in Decatur and my baby would be transferred to Birmingham without me. I prayed and after that I don't remember a lot until I arrived at UAB later that night. Our entire family was there to support us and welcome our precious bundle of joy into the world. Mercedes O’Brien Grissom was born at 8:50 am on April 15. She had the most beautiful cry I had ever heard. She was rushed to the Nicu immediately. As I laid in recovery praying over and over that my baby girl would be ok the nurses brought her in just so I could see her for the first time before they loaded her in the ambulance to take her to Childrens. I only got to touch my babies foot. After getting to Childrens and being evaluated it was determined that she would have her first surgery the next day. She had back surgery at 1 day old. She kicked those precious little legs from the time she was born. Who says Drs are always right? I knew right then that she was out to prove everyone wrong about her. She spent 6 days in the hospital and never once had any problems. At 6 weeks old we went back to Birmingham for a checkup and that is when an MRI determined she had Hydrocephalus ( fluid on the brain). Once again I was terrified. We faced her first brain surgery in just a few days to place a shunt. But once again she was the trooper shes always been. But the most surprising moment came when she was two years old.

She began walking. Oh and talking nonstop. Those were moments I will never forget. It was purely a miracle from God. And I knew it. Her Dr was so overwhelmed the first time he saw her walk that he actually cried.


  Then came time for her to go to school. I worried so much about her going to school on her own. But once again Miss independent told me on her first day “Momma you can leave now”. Throughout the years she has truly been my rock. I have always taught her that she can do anything she is determined to do in life. And that is exactly what she does. She has had 13 Brain surgeries, 2 back surgeries, two leg surgeries, and a bone removed from her foot. When she was in the 6th grade she started having alot of problems and we found out that her shunt had stopped working in her brain. She went into the hospital to have it repaired. She came through her surgery like always. But about two hours later as her daddy and I sit beside her bed our world came crashing down. We wasn't sure what was going on but we knew it was bad. I ran to the door and screamed for help. When the nurse got to Mercedes she immediately called a CODE on her. We were pushed out of the room to give all the medical team room to work. My baby was in that room and I didn't know if she was alive or not. The Drs and nurses continued to work on her for about an hour before telling me they were gonna have to put her on a ventilator because she was comatose from all the seizure meds they had given her. I remember them wheeling her from that room and people all around her working on her. The nurse in the bed bagging her. I can tell you this was definitely the scariest thing I have ever experienced in my life. No one knows the exact amount of love of a mother until you stand and watch your baby so helpless and machines keeping her alive. The Drs told me she would be unconscious for at least a few days. Well guess what she proved them wrong once again. By the time all our family had gathered in the waiting room that night around midnight she woke up and wanted the machine off of her. And that is exactly what she got. She cried all night that night because I could only go into the ICU every two hours to see her. But by the next morning she told the Dr she wanted out of there. She was then sent to a regular room. Three days later we came home. Things were rough. Mercedes fell into a big depression. She couldn't go to school. She had to learn to do a lot of things all over again. But by the start of the next school year she was ready to go.

  Mercedes is now in the 10th grade at East Lawrence High School. She maintains A’s and B’s. Her goal is to attend the University of Alabama to become a nurse. She has two sisters Alexis is 14 years old and Allie is 7 years old. Life has been a rollercoaster ride for those two also. Because they have been through a lot with their older sister. They have had to go periods of time without Momma and Daddy when hospital stays just wouldn't allow us all to be together. But my Mother and Best friend has always been there not only for me but for the kids also. And for that I will always be extremely grateful.



  Many people have asked me how do I do it. Well this is our life. It may not always be the easiest but it is who we are. I am very fortunate to have a very hard working and loving husband who has always been right there with me on this journey. A lot of marriages would never work under the circumstances. But hey this is the life we know. I leave you with this thought Always love your babies with all you have. Tomorrow isn't promised so make the most of today. We always know that no matter how bad our situation is There is always someone with bigger problems than ours."




"My name is Mercedes Grissom. I am 16 years old. I have hydrocephelus and spina bifda. In some cases these two things can be severe to the point where you can't do anything for yourself. I am one of the lucky ones. I can do anything any other 16 year old girl can do. Before I was born they told my parents that I would never walk or do anything on my own. They told them  that they may want to consider abortion. It took me two years but I eventually learned to walk. I have only been put in special education classes once. That was my first year of school. They soon realized that I didn't need to be put in them and I have been in regular classes ever since. Now that I am in high school I am even in some advanced classes. I have always made A's and B's.  I am also in beta club. I have had 13 brain surgeries, 1 leg surgery, 2 back surgeries, and a bone removed from my foot. I almost died from a brain surgery I had when I was 13. I had a very bad seizure after I had the surgery and I coded. I had to be put in the ICU over night. I have discovered through my disabilities that even though you may have it bad there is always someone who has it worse than you do. This is one of the main reasons I don't let them get me down. Yes I have had a lot of surgeries but I can still go out and have fun where some kids are a lot sicker and can't do that. I have also become the kind of person that always wants to help people. I can't stand to see someone who is in need and no one to help them. I have decided that this is what I was given and I may as well make the best of it and be happy, because this isn't something that is just gonna heal up and go away. I'm gonna have this for the rest of my life. I have already proven many doctors wrong by doing the things that I have, and I plan to continue to do that. After I graduate high school I plan to go to college to be a registered nurse. I am in trade school now to learn about the healthcare field. I just hope that I can always help people. They have helped me get through so much. My parents never treated me any differently than any other kid. I was never told I couldn't do something because of what I had so I guess I have never really looked at what I have as a "disability". I am proof that anyone can do anything they set their mind to." - Mercedes







Awesome girl and family. God bless. I love you.
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