My sister was born with spina bifida and is truly a miracle. She was asked to share with a group in her church last Sunday and I am so grateful she is allowing me to share her talk with all of you. It is uplifting, encouraging, miraculous and inspiring. She is proof that Jesus is real and alive and the love He has for us is never failing. Feel free to share!
I’d love to tell you a little bit about my story. We all have one. And every story is different. I love that about our world. Anyway, my name is Kristin and I was born with Spina Bifida back in 1980. Even though many have heard the term, Spina Bifida, not many people know exactly what it is.
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about 8 babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine. It’s much more common than you would think.
No one knows for sure what causes it exactly. Scientists believe that genetic and environmental factors act together to cause the condition.
There are many different kinds: Occult Spinal Dysraphism (OSD), Spina Bifida Occulta, Meningocele, and Myelomengocele.
Myelomengocele is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. 70%-90% of children with this condition also have too much fluid on their brains.
Normally it is treated with surgery within a few days of birth.
Just a few of the issues associated with Spina Bifida are: mental, social problems, problems with walking and getting around, latex allergy, skin breakdown, learning disabilities, bowel and bladder problems, depression, and many more! Most kids are in wheel chairs or have to use walkers. Also a lot of them have shunts because of the fluid that retains on the brain.
Medicine has advanced – tests can be done before birth, but back in 1980 – they didn’t know too much about it, so lots of people didn’t survive and most of those that did were severely handicapped.
I was born to amazing parents who had no insurance and were very young. My mom was 20 and my dad was 23. They didn’t have the tests they do now, so they found out at the birth that I had Spina Bifida. The doctors weren’t all that optimistic and told my parents to make the most of it, because they didn’t know how long I would live or what kind of life I would have. There was a top neurosurgeon in town that week and she heard about me. She approached my parents and offered to do the surgery for practically free. So, she did a major 5 hour microscopic surgery on me when I was 9 days old - with no guarantees. She was hopeful and because of that, she gave my parents a little bit of hope. My parents couldn’t even hold me until I was about 3 weeks old. I can only imagine what that and the whole process must have been like for them.
Grandmama and my parents wouldn’t hear of it. The whole idea of me not making it – so they met often to pray for me.
It was a waiting game though – crawling, walking, talking, growing… no one knew what was to come… and isn’t that the scariest part – the unknown??
Anyway, I had a pretty “normal” childhood. I was in dance, drill team, rollerbladed, jumped rope, and went to the hospital once a month for checkups. I really didn’t feel all that “different” from everyone else growing up.
My senior year in high school, I was in dance class and we started a unit on ballet. When they were asking us to stand on our toes, I couldn’t do it. I didn’t even know anything was wrong, but I knew I couldn’t stand on them. Well, they thought I was smarting off, so they sent me to office. After a call to my mom, a trip to the doctor and a few weeks later, we realized something was going on neurologically. My spinal cord was tethering (which means that the scar tissue was wrapping itself around my spinal cord causing a lot of pain and in turn causing my left leg and foot to draw up). I ended up having a few surgeries that year – 2 foot and one spinal surgery.
After my surgeries, it was the first time that I felt physically limited. My left leg and foot had gone numb in certain areas, which was weird. I had to wear a cast for prom and graduation… not that cool when you’re trying to fit in with everyone else! I was slowly learning I didn’t have to be like everyone else, but it wasn’t easy!
I grew up in a Christian home, but it wasn’t until I graduated that I saw how God was with me during all that. God made Himself so clear to me in different situations (through hospital stays, relationships, etc.) and it was the beginning of an incredible journey with Him!
One example of God making Himself known was right after my spinal surgery in 1997 – I was lying in the hospital bed on my stomach and it was my dad’s turn to stay the night with me. They had to move my legs and arms for circulation, because I was pretty medicated. Well, at one point in the night I felt someone touching the scar on my back – and that was a real no-no! Everyone knew that you just don’t touch my back. Ever since I was little, it was the most sensitive part of my body. Even the shower water would make me cringe as it hit my back. But that night, I thought my dad had gone crazy – rubbing his fingers up and down my back. So I yelled at him to stop! And told him to turn off the super bright light above the bed. I think it’s called the observation light or something. But anyway it was the middle of the night and my crazy dad had the light on and was messing with my back. Two very uncomfortable things when you’re stuck on your stomach in the middle of a strange hospital room! Well, the next day I was telling my friends all about my dad and how ridiculous he was during the night. Apparently he overheard me, but didn’t say anything. He told my grandma and about 2 months later after I had the staples removed and was recovering, I was visiting with her and she told me about that night. She said that she woke up at exactly 2:06am and felt the strongest sense to pray for God’s angels to rub my back and to heal it. My dad apparently told her that I woke him up at exactly 2:06am yelling at him about turning off the light. He said it was pitch black in the room and he thought I was crazy! Isn’t that something?? In the midst of all the pain and confusion of that hospital room and without us even knowing what God was doing – He was in the process of answering prayers. He was transforming my body. He was present! Since that day, I am able to touch my scar – it’s still a queasy feeling for me, but definitely different than before. And that’s just one story of so many…
So then, I moved to Houston and started working as a youth director at a church. I could see God working in my life then too. He was growing me in ways I had never dreamed of. As I was ministering to people and was able to share my story, I was starting to understand how much of a miracle my life really was. It all became real to me – for the first time. God was showing me in new ways how He had been with my family and me and carried us through those hard times as a child. He was showing me that He has a plan. It was stuff that I had heard my whole life, but never really experienced or understood.
Then a couple years later, I had to have another spinal surgery… this was a big one, because I was in chronic pain and could barely move half the time. So I had the surgery and of course – you have to sign your life away like all medical procedures these days… and once I woke up from that surgery I couldn’t feel from the waist down. Talk about scary! I went through major physical therapy while I was in the hospital and they told me that I would never walk again. Well, I had been taught that you just don’t accept things because someone says it. So, we prayed a lot! And being that I was as stubborn as I was – I refused to believe it. So, as you can see, I walk now – still not really feeling much of anything with my legs – and it’s a really confusing thing to tell people. Because how can you walk but not feel your legs?? I don’t know! I could try to describe it as my brain telling my body what to do…
Granted I trip and fall quite a bit! But I’m mobile and I’m not really complaining.
One of the coolest things is the fact that I was able to marry an incredible man, my best friend - who loves me regardless of all the things I have to deal with. He is the most supportive and understanding person I could have ever asked for.
And then there’s our children – oh my!! Talk about a miracle. Now my pregnancies were a whole other story, but to sum it up – I couldn’t feel contractions – which you would think is an awesome thing – except you don’t know when the baby is coming. And then there’s that whole thing of genetics – and with having Spina Bifida that can be a scary thing to maybe pass on to your child. So talk about fear – that is pretty much when I really understood the passage about fear and love not living together:
1 John 4:18 tells us: There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
Amazingly enough – after being put under general anesthesia and our babies being delivered c-section, they were all healthy and beautiful! I can’t tell you how relieved I was. But God used each of those pregnancies to grow my trust in Him. It was definitely a time of spiritual dependency.
I have had times of darkness – times when I feel all alone. Times when I compare myself to others. Times where I don’t feel like I fit in – I mean, I’m not “normal” like “normal” people and I’m not severely handicapped like most people with Spina Bifida, so I kinda fall into a category all my own. I have lots of issues that people don’t even know about. There are also time when I feel I’m just not good enough – I mean, I can’t run around with my kids, I can’t do things like other people… and for a long time, I tried to prove to myself, my family, my friends, and even God that I could do it. I tried to make it look like I was just the same as everyone else. That I was strong enough and could do anything. Working at a church with teenagers, I had to keep up – and that’s what I did. I planned Bible studies, went on mission trips 7 months pregnant – 3 different times J, went camping and hiking, slept outside and on the ground… pretty much proving to myself and everyone else that I could do it. But I’ve come to learn that I can’t do it all!! And I don’t have to! God wants to show His strength in my weakness. It’s such a simple thing that we hear all the time, but a really, really hard lesson to learn – at least for me. God has allowed me to experience this life for a reason. I know He wants me to be whole, and I know that we all have weaknesses, whether they are physical or not. It’s His strength – LITERALLY - that allows me to get out of bed and walk every day.
Through all this time – God keeps revealing Himself to me. I have had my “why me?” moments and God doesn’t let me stay there very long… He always says back to me “Why not you?” I have learned that this life is not about me – it’s really not about any of us. We are here because of the incredible love that God has for us– for the Love that He is! Our whole life is about Him. He uses us and what an honor that is!
My physical battle isn’t quite over yet – and I’m ok with that! I have issues – some that are really hard to deal with and will never go away. No matter what, I know Who my Healer is and I know He has a plan for my life. He is the One my life is about and if it takes me going through the struggles I have to deal with, then so be it. If my life can bring glory to Him, it’s all worth it! Again, it’s not pretty all the time – right now I’m dealing with a wound that won’t close!! On my “good foot” of all places! The bone structure in my foot is messed up. It’s been 6 months and I’m pretty sick of it, but I know my weaknesses do not define me and I know that I am not defeated. I trust in the One who has my heart and my life in His hands!
And I pray that you will too! Whatever it is in your life – whatever your weakness is – He is bigger than it. He is stronger.
So I’m reading a book right now and the author starts out with this quote:
“Why does this keep happening to me?
It’s not fair. I never asked to be treated this way.
I did nothing to deserve this.
Every moment of every day, completely unprovoked,
God pours out His love on me
He blesses me in unexpected ways
His mercies are new every morning
No matter what I do I am powerless to stop Him.
Even in the worst situations His goodness prevails. He is relentless.
I am a victim of grace.”
- Robin Jones Gunn (Victim of Grace)
So, just to close, I want to encourage us all to stop and look at what Christ has done for us. He has blessed us more than we deserve. We are not worthy of His love and yet He gives it freely and abundantly. I pray that we would feel His presence with us, even in the darkest times. Because He has promised that He will never leave us. Never!!