“In 1986, a single Mom-to-be, 7 months along, hearing the news, “Your baby has fluid on the brain. It could be Spina Bifida with Hydrocephalus” I’m sure fear and disbelief began to set in. Yet, there was the voice of the Lord declaring that everything was going to be alright!”

Q: What is your name?

A: Jessica Mobley

Q: How old are you?

A: 32 years old

Q: What type of SB do you have?

A: Myelomeningocele

Q: How can we continue to follow your story?

A: On facebook @JessicaBreathofFreshAir

In 1986, a single Mom-to-be, 7 months along, hearing the news, “Your baby has fluid on the brain. It could be Spina Bifida with Hydrocephalus but, we won’t know until after the baby is born.” I’m sure fear and disbelief began to set in. Yet, there was the voice of the Lord declaring that everything was going to be alright!

I was born on Tuesday, September 23rd. 6lbs 12oz kicking and screaming. They whisked me away to evaluate me while they finished up my Mom’s cesarean. Eventually, they brought me in so that she could see me while I was waiting to be transported to a larger hospital with more capabilities to care for me.

A few days after my birth, my Mom was released from the hospital and came to where I was and where the rest of my family had been with me. The Doctor had already said it was Spina Bifida and Scoliosis and closed the opening in my spine at this point. At 9 days old and on my Mom’s 24th birthday, I had brain surgery to place a shunt in order to drain the fluid from off my brain. At 2 weeks old, I was released from the hospital with a pretty good prognosis.

The days and nights for my Mom and Grandparents were spent caring for my needs, but most of all loving me! As a baby, my Mom dedicated me to the Lord knowing that my future was in His hands!

The next few years was a wait and see kind of thing to see how my mobility and brain would develop. Thank the Lord, I was hitting all the milestones as expected! I practically lived off of Spaghetti-O’s for a few years due to Chairi Malformation which made it difficult for me to swallow (eating became much easier as I got older.) At the age of 4, I began walking with the assistance of a walker and leg braces and I believe even a back brace at this point. I started Pre-K a year early to get me acclomated but then after that, I was right on track with the rest of the kids my age. I started doing physical therapy regularly at school and at home. My Papa built me what we called an obstacle course. It was a platform with stairs on each end and railing on the sides. I walked it every.single.day. Papa was determined that I was going to beat the odds and walk on my own. When I was 6 years old, that dream came true and I threw down my walker at school and started walking on my own. A miracle took place on that day!

School was a little challenging especially in the subject of Math which is common with Spina Bifida. We tackled my daily medical needs, education, and thank the Lord, not too frequent surgeries or infections head on. I took ballet and tap which really helped with my balance and was involved in church activities. I never really got bullied too much. I guess that’s the benefit of being raised in a small town where everyone knows who you are. As I got a little older, making friends and dating became harder as I became more aware of my differences. I chose not to be a part of a Spina Bifida community growing up because for one, there wasn’t one nearby and two, I really just wanted to be like everyone else.

As I reached my teenage years, the Scoliosis combined with the Spina Bifida became more of an issue. I was always shortest in my class. In the 5th grade, I eventually needed surgery to correct a portion of the C-curve of my spine. The surgery went perfectly and my surgeon was amazed with how quickly and well I healed. All glory to God! The same goes for the second spinal fusion that I had a year or so later to straighten the top portion of my spine. My surgeon told us that the lower half of my spine should follow along and straighten itself out without surgery – That was the hope at least because the lower you go, the more risk of complications. Well, it didn’t so into surgery I went in the Summer before 11th grade. That recovery was painful and longer than the rest. I would say about a month later, we noticed a large hard bump on my back. We were obviously concerned so I went in to get it looked at. One of the screws had come lose and was protruding, so scared and angry I went back into surgery.

While forced to remove the bottom rod, my surgeon also removed the original rod that was at the middle of my spine, thinking that I didn’t need it any longer. A day or so after surgery, the nurse helped me get out of bed to sit in the chair and possibly go for a walk. As soon as I sat up I could tell something was different and so could my parents. I was slumped over. I tried to stand but couldn’t. My legs were like noodles and gave away. I was scared and frustrated because this was not normally how my recoveries go. (I’m an over-achiever and like to beat the odds.) The next day, the same thing, I still couldn’t stand and the next day and the next. After several days, I was discharged from the hospital and started going to physical therapy and I wore a back brace again – which I hated because none of my clothes fit properly and it was so uncomfortable. I was eventually able to walk using a walker for about 3 months (the ones that you put tennis balls on the bottom of them to help it glide better. So stylish. Haha) before walking on my own again. By this time I was 18 and could no longer see that surgeon.

The following year, I began experiencing severe pain in my back and legs and my balance was getting worse. After testing and going to a pain management Doctor but getting little relief, I was referred to an adult orthopedic surgeon in St. Louis, Missouri. He said he could fuse my entire spine by placing one rod that would run from the top of my spine all the way to the bottom. I asked if it would improve my mobility and his response was “no.” We scheduled surgery and returned back home to Florida.

During this time the Lord had really been dealing with my heart and drawing me closer in my commitment to Him. My Dad had recently left and filed for divorce – a major devastation that completely turned my life around. I was committed to prayer and tapped into the gift of intercession. As I prayed more and more, I began to feel uneasy about the surgery. It was weird because as crazy as it sounds, I was actually looking forward to the surgery relieving me from the pain that I had been having. On Tuesday nights, Mom and I went to intercessory prayer at our church. While praying there one evening, I heard the Lord say, “I created you. I do not make mistakes. Your life is a testimony. I have come to give you wholeness and healing.” I began to pray on it and ask the Lord for healing. The Lord confirmed that word to me in a dream and I felt led to cancel the surgery, take a leap of faith, and wholeheartedly Trust God to do what He said that He was going to do. So, I did.

As time went on, there would be extended periods of time when I didn’t have any pain at all. I knew God was working. I’ve also had times of pain and deep discouragement. Around the age of 24, I began to lose all my balance and most of the strength in my legs over time and slowly worked into needing to use a wheelchair full-time. I felt defeated. I let pride get the best of me because I never thought I would be the one in the wheelchair. I was always going to be independent. But, I had to come to the realization (with the Lords help) that the wheelchair or having Spina Bifida is not a curse, but a blessing and that God’s promise still stands! The Lord helped me look at that chair from a different perspective. I now see myself as free to go where I want without getting exhausted and being in an extreme amount of pain. If it wasn’t for it, I wouldn’t be able to do some of the things I’ve done and see the world! Is it still frustrating at times? Sure. But it doesn’t define me! Neither does it confine me!

Years later, I began to feel unsettled where I was at. I wanted something more. I wanted opportunities to make a difference in this world. Especially to the people that were going through medical issues, like myself. When the Lord told us to move to North Carolina, I knew this was the place with opportunities and for God’s promise to be fulfilled! God has not disappointed! Now in my 30s, for the first time, I’ve connected with other people that have Spina Bifida, I have an amazing boyfriend who is an answer to prayer and everything I need that I didn’t even know I needed – As we can relate to each other with us both having Spina Bifida. I have a wonderful group of friends that I met from Camp Carefree – a camp for people with disabilities. What wonderful gifts that I have been given in love and friendship! I’ve advocated for myself and others with the Spina Bifida Association. Last but not least, I’ve been strengthened in my walk with the Lord. My eyes have been opened to wisdom, knowledge, and understanding to Spiritual things. I have made myself available to the Lord to use me in my current condition. God has remained faithful!

Jessica has been through so much in her life and has never let that get her down.  Her faith seems to keep her pushing through as well as the love and support from her family and friends.  We all need to be surrounded by people who lift us up in order to make it through the tough times.  It’s a great support system like this that can get you through anything!

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Kristin Marquis

Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!