Friday, October 30, 2009

Graci Lou

I was telling my friend the other day how excited I was about this blog that I'm doing. It has been so good for me and super encouraging to hear everyone's comments. Anyway, it hit me that she has an absolutely incredible Etsy store.

So I added a little button for her site on the right hand column and wanted everyone to know that if they purchase something from her etsy store to make sure they mention "raising toby" so that they can receive 10% off.

Her stuff really is beautiful.

Also, I was thinking about all you mom's out there with special needs kids. (Of course especially the ones with Spina Bifida) How perfect is this for our kids to know how incredibly strong they are?

A superhero cape!! Seriously, I love this! Especially with their name on it!

Anyway just wanted you to know. Thanks for checking her out.

When you get surprised

So, today we had our appointment with Toby's Orthotics guy. (I can never remember what they are really called) I wanted him to check on the work the guy in Florida did and make sure he thought Toby's heel was getting better.

So out I march with three kids. Gracie, (who has a weird rash on her face) Toby,(who isnt happy about getting his braces worked on) and Milo (on his last diaper)

Oh and dont forget, Me. (whose coffee pot messed up and hadnt had a cup of coffee yet)

We were certainly a fun bunch.

So we get there and everything is going well. Jim gives us the go ahead to start wearing the braces again and works on one little piece. Before we leave we put Toby's braces back on.

At this point it had been over two weeks since the last time Toby wore the braces. It showed. He just broke down on my lap. He cried and cried. Part of it was just plain bad and part of it truly broke my heart. Life is so much easier for him without those braces. He can crawl around playing and do almost anything he wants, besides walking. He looks at those braces as something that is holding him back, not something that is helping him. He's three and just doesn't understand that he cant crawl around forever. Those braces weigh him down and make it so much harder for him, but the also give him the ability to stand, to walk and to experience things he would never be able to without those braces.

It has struck me plenty of times that there can be things God places in our lives for our good, but we just view them as getting in our way. I know that Toby's braces will make him stronger, but he doesnt. I believe it's the same way with us and God. God knows that our trials will make us stronger even if we view them as hurting us or keeping us from the life we want. I know that God has used trials in my life to allow me to experience a relationship with Him that I dont believe I would have ever experienced if not for those hard moments.

So, I'm sitting there holding my crying son while Jim is trying to talk to me about what is going on. One of Toby's knees is messing up, (he used a more medically correct term) He let me know that if we don't get him up and walking that its just going to be harder and harder to ever get him to that point. At this point now I'm feeling pretty overwhelmed by this thought, which is being magnified by Toby crying and now Milo has gotten in on the action.

This is where the surprise part comes in.

Jim stops and looks at me. He stops talking about how we need to push Toby to do more and says, "I think I'm getting a glimpse of what you are up against here." (refering to Toby's crying about the braces) "I know this must be hard and that as a mom you just want to take them off."

There was nothing poetic or incredibly deep in those two sentences, but they made big tears start filling my eyes. As I felt the tears I really thought, WHOA where is this coming from, but then I realized. Jim did something that not many people do in the medical community.

He took the time to validate how hard this was for me as a mom. He took the time to let it be not just about all the medical junk, but about the emotion behind it all. The fact that he recognized that, helped so much. In my life we havent been around many who are willing to take that step.

So for today, even with the rough morning, I am thankful. Thankful for a couple sentences that God used to help me be prepared for the next few days of getting Toby used to wearing his braces again.

Wednesday, October 28, 2009

Holding Hands in a Wheelchair

As soon as I saw this picture I knew I wanted to put it on here.

Can you see it? Can you see them holding hands? This is Johnny and Toby. I love this picture so much because it's something Toby doesn't get to experience very often.
Holding hands with a friend seems like not a big deal, but to me it is.
Most friends don't consider holding Toby's hand because of the chair. Not in a mean way, it's just not something that is thought of.
I use to think that this was something important only to me, but honestly the more I think about it I think it's important to Toby also. I love watching him smile when someone reaches for his hand.

Of course Gracie had to get in on the fun!

I wanted to put these pictures up because it is such a small thing to overlook or view as unimportant. I believe that moments like these are some of the most important. They make your child feel loved, a part of everything and the same as any other kid. Don't overlook these little moments in life.

Seek out these moments. They really are the best!!

Milo didnt want to be left out of this post.

Saturday, October 24, 2009

The Fingerprint

Its funny to me how a small moment in your life can change it so completely.

The interesting part is that I cant even remember the day or month that it happened. But it happened and today I am a different person because of it.

It was a Sunday morning and I was sitting in Sunday School. Nate (my husband) was teaching the teenagers (he's the youth pastor at our church) and I was beginning to zone out. Sometimes it's really easy as a youth pastor's wife to think that the message doesn't apply to you because it's geared towards the teenagers. Not true.(and by the way I know that's horrible)

This particular morning Nate was talking about children with disabilities. This of course caught my attention a little bit.
I heard him read an incredibly familiar verse.

Psalm 139:13-14
For you formed my inward parts;
you knitted me together in my mother's womb
I praise you, for I am fearfully and wonderfully made
Wonderful are your works;
my soul knows it well.

Sometimes I think the problem with these verses is that they are so familiar that they can go in one ear and out the other. You can forget to sit there and really soak up the meaning.

Okay, lets step back about three years.

When I first found out about Toby's diagnosis I did not struggle as much with the usual, "Why God?" I struggled with guilt. I hate to even use the word guilt because it doesnt seem to really capture what I was feeling. When you think of the word guilt it's easy to picture a child doing something wrong and getting in trouble, and in turn feeling guilty about what they had done. This was so much more than that. I felt completely and utterly devastated by my guilt. Toby's diagnosis of Spina Bifida was my fault or so I thought. I was the only one responsible for taking care of him and carrying him for 9 months. I had failed. I never got truly angry with God I was too angry with myself. I struggled with guilt about every aspect of his disability. It was a sickness in my stomach that I could try and push away but would in the end overwhelm me. There was so much guilt that I couldnt even talk to anyone about it. It felt almost like a guilt I was trying so hard to hide, but in my hiding it I was actually sealing my guilt that much more.

For about three years I walked around with this guilt. It was always with me no matter where I was in my life. I'm not trying to be overdramatic, but I do want to get across how completely overwhelming it felt.

So jump ahead to the Sunday sitting in Sunday School class. Nate was discussing this verse with the teenagers. I had only read this verse in the King James Version and he was talking about the actual meaning of the words. He really focused in on the word, "knitted." This word really stuck out to me. Before Nate and I even got married Larie's now mother-in-law, Robin Buck was trying to teach me how to knit. I'm kind of a hard student to have so any time someone takes the time to teach me something I really appreciate it. I really enjoyed those lessons with her and while I was sitting there in Sunday School class I was picturing myself struggling with every little knit that I was trying to do. It took me FOREVER to get something big enough to be considered even a dish cloth. (kind of wishing I had kept it up) The reason that's important now is it started changing the way I viewed Toby. I am completely one of those people who learns through pictures or examples. Well, I'm picturing God knitting my son together for the first time. I've always pictured Toby's back as a horrible mistake, a defect as they call it in the medical community. Something that God wasnt responsible for, but something I was solely responsible for. That day in a teenagers' Sunday School class an incredible truth came into my heart. (It's incredible how God works) I looked at Toby as being knitted together completely the way God wanted him to be. Not a mistake that I had done to him. God knew every single part of Toby. What an incredible burden that was lifted off my heart that day. I don't understand why it took so long for me to come to understand that or why it was that particular Sunday School class that got my attention, but it did.

I want to put a little segment of Nate's book here because this was the other part in the Sunday School class that he went over that completely blew my mind.

"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."

If you know anything about Spina Bifida you know that Spina Bifida Mylomengicele is basically like a hole in the back where it didnt close at all. The damage done in the womb is there forever. Toby's spot on his back was not bubbled out at all but flat. He ended up having three different back surgeries to get it completely closed. The last one they had to really stretch the skin and he ended up with the shape of an oval towards the middle. I know it might seem a little cheesy but as I've said before I learn things by pictures. I look at that oval and really picture in my mind God putting His finger on Toby's back knowing exactly how He is knitting Toby together. Not only knowing, but making Toby even more important because Toby got the permanent signature of God on his life. Toby has God's fingerprint on his back.

That day God helped me to look at my son and myself in a different way. That day God wiped away my guilt and gave a peace that I am still holding on to.

I know that Toby's life is so important and that God is using His life to bring glory to Himself.

Thursday, October 22, 2009

Vacation Fun

We have had an awesome time this vacation. It's been crazy, but incredible. For part of the time we were able to go up to Greenville,SC to visit my parents, meet Nate's editors and see the college campus again.

My parents took us to the Japanese Steakhouse that was in town. Toby wasnt quite so sure about the fire, but after a while he eased up to the idea. Milo was never too sure about it.

Then of course the most fun thing was the free thing. My parents found some empty box lids and let them slide down their front yard. (I'm sure we looked very classy while we were doing it) The kids had a blast and thats what was important. I dont know why the things kids love the most are also embarrassing!

To me there is something incredible about seeing Toby play a game that doesnt have to be rethought or redone to make it possible for him to participate. I feel like a lot of our life is spent doing just that. This little game was perfect and just plain good for my heart because he played the same exact way Gracie did

Tuesday, October 20, 2009

Crying in IKEA

So, tonight I took my first ever trip to IKEA.

So, tonight I cried in the middle of IKEA.

Let me explain.

In my head a feel like I have a running list of things that make me sad in regards to our life with Toby. For example, I might see a child do something that Toby will not be able to do. Knowing that it will not be a part of Toby's life and knowing that there is nothing to do at the time about it I just tuck it away for another moment. There might be things that will make me sad but wont be things that I can do anything about until Toby is much older. So I just tuck that tidbit of information and put it away for maybe another time to be sad. (since it wouldnt be appropriate to cry in a IKEA! :)
I truly believe this is a survival mechanism God has given me to help control those moments of sadness that seem to come at inopportune times. I'm sure some of you other mom's must know what I'm talking about. The moments at playgroups or walking around the mall or of course even walmart. You cant just stop grocery shopping and sit down and cry. So you just add it on to the list and it seems the list gets longer and longer.

Well, there are certainly plenty of things on my ongoing list that I do not think on daily. (I would be crazy now if I did) And sometimes I can even forget about them until they resurface.

So, picture this with me. I'm walking around IKEA with my friends and Toby, Milo, and Gracie just enjoying the atmosphere and trying to figure out things I can fit in my suitcase. (Im still in Florida) When I come across this

Doesn't seem like too big of deal, right? WRONG!! In the store they had it set up with a mattress on the ground where the hole is. So it was like a bunk bed but with the one bed on the ground. That's when it hits me. I get to do something that I don't get to do very often.

I scratched something off my list.

You see one of the things that had made me sad when I realized I was having another boy was the fact that I couldn't picture them in bunk beds. I always pictured brothers in bunkbeds.. I know it's a little wierd, but just one of those things. Well, the problem was that I couldn't wrap my mind around how Toby was going to be able to have a bunkbed with Milo without having to make it look weird with steps and all kinds of things added to it.(I really like things to look as normal as possible) So when I saw the bed at IKEA I realized that here was an answer. I know longer needed to feel like this couldn't be a part of their lives when they got older. It very well could be and it could still look nice. I pictured the boys just sitting there on the beds hanging out just like any other brothers. So that's when the tears started. In my mind I took that thing off my list and something incredible happened in IKEA.

My list got shorter

Thursday, October 15, 2009

P.K. Hallinan

ONE of the many things I wish society would do differently in regards to handicapped children is adding pictures of them more frequently in books and on television. I'm not talking about a sweet little book about the little boy in the wheelchair and how he uses it. I'm just talking about having the little boy in the wheelchair be some part of the story, maybe even the hero of the story, without having to mention his wheelchair. I think there is a downsize to stories about wheelchairs for children because it draws attention to the chair instead of to the child that's in that chair. I know there are plenty on their who know someone who is just an incredible person who just so happens to be in a wheelchair.

One of the author's that I believe does a good job of this is P.K. Hallinan. 'When I grow up' is just one example. His stories just have a little boy in a wheelchair scattered throughout the book, without mentioning the wheelchair itself. Now I will have to say that not ALL of his books do this, but there are quite a few.

Now before you mom's who might not have a child in a wheelchair dismiss this post as not pertaining to you. WAIT
How much better for your child to see on a casually basis pictures of children in wheelchairs? How much more prepared would your child be when seeing a child in a wheelchair? Yes, it seems like a small insignificant thing, but I think it's big. I think it's really big. I want my son to go into McDonald's just like any other boy without children staring and whispering. (yes, granted that is incredible normal) but don't you believe that it would be a lot less striking of a sight if your child had books or shows that had children in wheelchairs on a regular basis. So here's what I'm asking of everyone reading this: (Whether you be a grandma, aunt, cousin, friend, or sunday school teacher) could you find a book for whatever children are in your life with pictures of a child in a wheelchair? Maybe we can really start someting. Not just for Toby but for all those children who truly want to be seen for you they are and not for what they are sitting in!

P.K. Hallinan is the only author I have found so far that does this. If you know of any other's please let me know!!

Wednesday, October 14, 2009

Normal to Crazy in 2.5 Seconds: KAFO's

I'm sure any mom can undertand this.

You think your day is going well. There might be one small issue going on but nothing big. You're sitting around and decide to call up the ______________ (fill in the blank: doctor, therapist, orthopedic specialist) to mention what you seem to think is a small issue.
That's when everything changes. Your small issue turns into something much more serious then what you thought. You go from the mom who has it all together, to the mom who doesn't have a clue what's going on.
Not what I would consider a fun time.
As I've said before we are on vacation right now. It has been pretty uneventful concerning Toby. Especially for being at such a new point in his life with really pushing for walking and other things.
About four days ago Nate and I noticed a small red circle on the back of one of heels from his KAFO'S (leg braces). I thought, no big deal, leave them off for a day or two and it will be better and we will put the braces back on. The problem being three days later the red mark was still there.
Well, Im still in the 'no big deal' stage. Yesturday, I decided to put in a couple calls back to Texas to find out what we needed to do.
Within what seemed to be a couple seconds I found out that it was indeed a more complex problem. We needed to start putting heat on it, massaging it and work on finding an orthotics guy down in Tampa.
There is something about trying to find someone who is willing to work on something as imortant as a KAFO while out of town and trying to work out insurance and all that. Well, as I sat there stressing out and worrying, God was working everything out. God knew that this would happen and would also know how the outcome would be. I called the Spina Bifida clinic in Florida yesturday and really thinking I wouldnt here back from them. At 8am this morning they called back,(which is an incredible time frame) by 9am I had found an orthotics guy that would see Toby any time TODAY! By 2pm Toby had his braces fixed by a wonderful man and we left the orthotics office without ANY bill whatsoever. He worked on his braces completely for FREE!

Can there by any other reason of this afternoon going so well other than God working? NO WAY! I am so incredible thankful that God knows everything we will face before it happens and not only does He know, He takes care of it.

There were hard parts of the day for sure like when Toby started crying as soon as the man walked in because he had a white coat on. Or when I didn't have my cell phone on me to get the number for our office in Tampa. There will always be those hard parts of any of these types of situations. But I know that I can either sit here and think on how sad I was when Toby cried or how stressed I felt about not having my phone...OR I can focus on the incredible grace of God and how He completely and utterly took care of this for me.

Thursday, October 8, 2009

The Incredible People

Today we returned to Greenville, South Carolina for the first time since Toby was 2 months old.
Greenville holds some incredible memories for us. It was where we went to college, where we had our first apartment, first home, first child Gracie was born and where we found out about Toby's diagnosis, gave birth to Toby and spent four long weeks in the hospital with him after birth. This is where people rallied around us, prayed for us and supported us. This will always be considered my home to some degree.

I am reminded of all the incredible people we had in our lives while we were here, some that we still keep in contact with and some that we will most likely never see again. God used so many people in our lives through those months I could not imagine mentioning them all, but I do want to mention a few. I believe that looking back at times like this can truly help us see the goodness of God.

There was Dr. Greig who was the one who first broke the news of Toby's Spina Bifida. He was the "worst case scenerio Dr." The one who pats you on the leg while he tells you how bad it's going to get. He's also the one who lets you cry. He's the Doctor with the big box of tissues in his office. Dr. Greig acted like he had all day long to sit there with us while we cried and tried to soak up all this information. I never felt guilty for cying in his office.

Then there was Jean Brown. She was the head nurse of the Spina Bifida Clinic. She was the one with all the information. She gave you the facts and only the facts. She told you the worst case and the best and then let you know the chances would be you would be right in the middle. She didn't have time for your tears. (not in a bad way) She was there to equip you. To make you into the fighter that you needed to be for your child. She'd let you know everything you needed to know, but not one sentence more. She made me realize that I could take care of Toby and if I had any doubts, well, I just didn't have a choice. There were days when I needed that more than anything else.

Then there was The Blakes. They were the family that didn't beat around the bush. They didn't tiptoe around you at church because they were afraid to upset you. They asked the hard questions and sat their and listened while you gave them all the answers. They were the people that you got to rehearse everything to that the Doctor's had told you. It sunk in a little more to say it aloud. Then they would hug you like there was no tomorrow and pump you full of incredible food before you left their home. They were the listeners. Days when that was all I needed someone to listen.

Then there was Debbie Jones. She was the practical one. The one who gets no glory. Not the one who is holding your hand at church or sitting at the hospital with you. She's the one that sits at home watching your other child and making sure you don't worry about making it to any appointments. I don't know what we would have done with out Debbie. She never once asked for anything in return. She was just always there and always willing. After we got the diagnosis for Toby we went over to her house to pick up Gracie and she never asked a question. She just did her part and kept being willing to do more.

Then there was Larie and Phil. The friends that are once in a lifetime friends. Larie was the everything person. The shoulder to cry on, the practical one, the listener and the fighter. She matched whatever I needed on any and every day. When I was ready to fight, she put on her boxing gloves, when I was ready to cry and not go on, she was crying with me, when I needed someone to take Gracie or go with me an appointment, she was riding in the car or taking Gracie to McDonald's. When I needed to talk everything out, she listened without offering advice. I know that Phil sacraficed a lot of time with his wife through those months. I know he was there to let Larie cry when Larie was got home from crying with me. He was the supporter Larie needed so that she could be the supporter that I needed. I am so thankful that God moved them to Greenville when He did.

Looking back there was so much I needed through that time in my life and it is incredible to look back and see that God filled each and everyone of those needs. It gives me the hope to know that God is going to continue to fill those needs through the coming days, months and years.

I know that if you have a child with special needs there is a list of people you could think of. Maybe you can sit there and list them all out, but my challenge today is to look back and thank the Lord for providing those people for you and maybe even call them up and thank them. Chances are a lot of them had no idea!!

Monday, October 5, 2009

A trip with baggage

Going on vacation is something that we always look forward to. We leave tomorrow with Nate, Gracie, Toby and Milo all together. Nate will come back home after a week to go back to work and Gracie, Toby, Milo and I will stay in Florida for another two weeks for my friend Mesha's wedding.
I'm excited about so many parts of this trip. The first week we are driving up to Greenville to do a book signing for my husband and we will be seeing the city that Toby and Gracie were born in. Greenville will bring back so many memories for me. Good ones and bad. So for the next few posts I'll probably be talking some of those memories.
There are parts of this trip that I know will be hard also. Hard for me as a mom and also hard for us as a family.
The hardest part for me is comparing. My best friend Larie lived in Greenville and was pregnant at the same time I was in Greenville and pregnant with Toby. We both ended up with little boys within 2 months of each other. The last time I saw her and Johnny together was two years ago at Susie's wedding. The boys were one and I remember being so thankful that Johnny wasn't an early walker. I guess what didnt come into my mind at that time of thankfulness was the fact that HE WOULD indeed be a walker. That there would come a day when we would take this trip (again for a wedding) and there would be Johnny walking and Toby not. I know that it will be hard to not compare. I know everyone mom has a problem with comparing their family situation or their kids with others. I want to enjoy this trip and not spend the time wishing for Johnny's legs on Toby's body. I don't want to be over dramatic and for you to picture me sitting in the corner in the fetal position crying and unable to enjoy myself. Trust me I will enjoy myself. This is my home and these are the people who understand more than anyone in the world. But there will be those times when the hurt will almost knock you over and the problem is that it can come on so suddenly. I know there are so many who understand this sudden pain I am talking about. It's the kind you cant just sit there and explain or cry because it's usually when no one is aware of it. I know Larie understands because of her desire for another child and her multiple miscarriages, I know Jamie understands because of her little girl's cancer and I know there are plenty more I am not mentioning. This pain usually happens when you aren't planning on it or thinking about it or discussing it. It just happens.
I remember leaving a park after what I thought would be a perfectly normal playdate. I knew Toby couldn't walk, I knew he wouldn't be able to play on the playground, but yet there I was leaving the playground crying my eyes out because all of a sudden the pain seemed unbearable at the moment. I think that's one of the hard things about the day to day life. You never know when the pain is going to hit and knock the air right out of you.

When Toby was in the NICU a mom whose son was grown, but who had Spina Bifida had come to talk to me. She told me, "You will cry." I thought she meant that I would cry during hospital stays, during therapy visits or doctor's appointments. I didnt understand then that she meant, You will cry and cry and cry and cry and not plan on crying but cry again. That you will cry after playgroups, you will cry after vacations and you will cry at any given moment when a new thought hits you or maybe the same old thought over and over again.

I think the only thing that I have come to realize this trip is that it's okay. It's okay to cry and it's okay to let people know I'm crying. It does not mean that I wish for another child. It does not mean that I love Toby less. It does not even mean that I would change things if I could. It doesn't even mean that I don't love Johnny or want to be around him.

This life with Toby, Gracie and Milo is certainly a journey. I know that this trip there will be trials, there will be heartache, but there will also be (and more importantly be) happiness, triumphs and of course a wedding!!

So instead of dreading this trip, like maybe I would have done. I go, with yes some fear, but with the realization that God is going to give me the grace to handle those sad moments and the tears that go along with them. I thank God so much that I can have a personal relationship with Him.

Friday, October 2, 2009

Try something new

Let me challenge all you parents who have a child with special needs to do something in the next few days. Look for something your child cant experience that a "normal" child would be able too. I know it seems heartless, but find something that you might not realize your child isnt able to do. Then fix it. Even if just for a few moments make it where your child can experience it. Get creative and work around the disability. As you can probably tell from the picture I realized that my son Toby never got to look out windows like the rest of the children his age get to do. So we fixed it and I set him up with his braces to do just that. He loved it and it was one of those little triumphs in our lives to watch him experience something new. If we dont look for opportunities like that those opportunities will be lost. Even things that might not seem to matter. Like turning around and watching the toliet flush or watching a roll of toliet paper unwind. (I dont know why I have the bathroom on my mind) Maybe it's just sitting on a skate board or sitting on the countertop helping cook. I think it's easy to over look these things because we try to focus on what our child can do not on what our child cant do, but then we miss out on the opportunites to help them do something that they can do with a little creativity. I will look at this picture and always remember the day that he stood and looked out the window for the first time. I'd love to hear of any thing that you came up with for your child.

Spina Bifida Awareness Month

October is Spina Bifida Awareness Month.
My son Toby has Spina Bifida, myelomeningocele L3 - L4. Toby is three years old, uses a wheelchair, crawls around the house, and is beginning to use a walker with the help of leg braces.

This article was taken from Sometimes the easiest way to understand things like this is when it's written to children. I think adults get too caught up in using big medical terms.

What Is Spina Bifida?
Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between your brain and the rest of your body. The messages tell your muscles to move so you can kick a soccer ball or pick up a pencil. The messages also tell you about sensations on your skin, so you know to pull your hand away from a hot pot.

When a baby is growing inside its mother, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don't grow the way they should, leaving an opening where the spinal cord may protrude outside the body. When this happens, a baby is born with spina bifida, a term that means "split or open spine."

Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that's damaged may not be able to do the important job of getting messages to and from the brain. Usually when your brain says "kick the ball," the nerves of your spinal cord carry that message that tells your leg to kick.

These messages may not be able to get through if a person has spina bifida. The person may not be able to move their muscles the way other people do. This is called paralysis (say: puh-ra-luh-sis), which means a person can't move some muscles or to feel things on some parts of the body.