Nicholas

Hi My name is Jennifer and I am the very blessed and proud mother of an almost 2 year old, Nicholas, who was born with Myelomeningocele Spina Bifida, Hydrocephalus and agenesis of the Corpus Collosum. When I was pregnant, we were told that our child was very sick. That he had "water on the brain" and his ventricles were dilated. We were told he would be blind. We were told he would be paralyzed from the waist down, have numerous learning disabilities, and have zero quality of life. Our neonatologist stared at the ultrasound, shook his head and said as he handed us a ripped piece of paper, "Here is the phone number to a late term abortion doctor. I highly suggest you make an appointment."

When I tell you that not one doctor gave us hope, I am not exaggerating. As a matter of fact, the feelings I got from the doctors and specialists was more so that if I chose to have my son, I was not doing the right thing by him. They made me feel like I was carrying a monster. I cried everyday, I felt so scared, angry and confused. I just wanted somebody to tell me that it was ok to keep my baby, that everything would be ok. I searched online, and that scared me more. I found myself fighting with everyone who thought they knew better than I did when it came to MY child. Ultimately, I decided to fight for my child. I did not care what the doctors, specialists, friends and family members had to say. This was my baby, my decision and one I would have to live with for the rest of my life.

I felt my baby boy kicking me, strong kicks too, as if he was telling me "mom, don't give up on me! Fight for me!" I came to the conclusion that God chose me to mother this special child. I didnt care who was with me or against me, I didnt care what he was going to look like, I put all my fears aside and I did what I knew in my heart that I needed and wanted to do, I was keeping my amazing baby and he and I were going to fight
together.

At 35 weeks, my water broke. Nicholas was born on June 16, 2012 via emergency C section. He had his Spina Bifida repair surgery 12 hours after he was born, and ten days later due to the spinal fluid buildup in his head, he had a VP shunt placed in his skull. He was the most beautiful baby I had ever seen, he was my little fighter. Ill never forgot before he went into his spine surgery, his neurosurgeon telling us"he may not move his legs after this surgery, prepare yourselves" I looked at him, and I told him, "He will feel his legs, please take care of my baby as if he were your own" Ill never forgot the faces of the nurses and doctors when Nicholas moved his legs for the first time after his surgery.

Nicholas will be 2 in June, and last month he started independently walking! (Click HERE to see a video of his first steps. )Nicholas is so handsome, and such a joy I could not imagine my life without him. He is a lover of life and people and animals and he is the sweetest little boy! He is delayed about 6 months in gross motor skills, he is on target with fine motor skills and is extremely smart! He yearns to learn, loves books and loves going to the park! He can count to 13, he knows his colors, shapes, alphabet, numbers, animals and animal sounds. He is quite the comedian and has this amazing personality! When people meet him, they do not even realize how much he has been through and
how many serious disabilities he has.

At his neurosurgeons office last week, the surgeon watched nicholas zoom around the room, curious and simply being a normal almost 2 year old. The doctor had tears in his eyes and said "I cannot take all the credit for this, God played his part" It was a moment where I honestly felt like he was thinking to himself, this is why I do my job. He called my son miraculous, but, my son is not the only one! I have heard many stories where we are told the worst, and it ends up being the complete opposite! There are scary moments, there are weekly therapy sessions and early intervention, but its such a small price to pay for such an amazing blessing! I thank God every single day that I was chosen to be Nicholas' mother, and that I was strong enough to fight for my son. He proved a lot of people wrong, and is an inspiration to many. I want to share our story because I want to be there for others, I had nobody to give me hope, so I want to be that person for other families.

 

   

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.