secretramblingsofapastorswife

I know..its always something with me. But I've got a new project right now. I've been working on for about a week. give or take a few days. www.spinabifidakids.blogspot.com there is a link on the right of my blog. Im super excited about this because I think it is NEEDFUL! It is so hard to sit and google tons of information regarding spina bifida and all the MANY MANY areas of these kids lives. I am hoping to have others contribute ideas and for it to slowly start growing into a site that is easy to search and easy to find ideas. It is also a place for all the SB blogs out there. SO you can see how these kids are doing and how incredily strong they are. It is also a place for people to donate used medical equipment like walkers and such. Anyway, check it out when you can.

So, thanks to some incredibly generous people we were able to give Toby his first bike for Christmas this year. It was soooo exciting. I will admit that at first he was more excited about his bike helmet. (for some reason he attributes helmets to being a big teenager.) I love this video sooooo much. In the first 2 seconds you can hear Nate talking to Toby in the background, "Never give up." Then later on you hear Toby tell Gracie, "I'm gonna beat you" I just love that we went outside and the kids got to ride bikes together. HOW AWESOME!! Just wait till Milo gets bigger and gets his first bike. I am just so incredible thankful. sooo increidbly thankful. One day I hope that Toby can look back on this and truly understand how many people love him. For now, its just a totally awesome bike with a totally awesome helmet that makes him look like a teenager. : )

This entry is really supposed to be about the kindness of strangers. Hence the title, right? Well, I have to preface it with what happened last night. Toby walked around a store for over an hour with no breaks!!! Nate had Upward Basketball practice and so I was left with three kids and Christmas shopping to finish up. I've been really wanting them to pick things out for each other this year so they can be focused more on the giving than the receiving. Well, we went out and I brought the sit and stand stroller and Toby's walker. I was feeling pretty stinkin' daring if you ask me! So of course in the process of going into the store, the walker slides down the bar that I have it hooked on and smashes right into Toby's wrist. He cries and I'm feeling quite bad about it. Well, I decide at that point I might as well say goodbye to him walking because his wrist was already looking rough. We got in the store, and I started walking and Toby yelled out, "Hey, you forgot ...

So, it had been almost 3 years since our last Spina Bifida-related ER visit. Not bad!! After so many ER visits the first few months of Toby's life I just thought that it would be that way on a regular basis. But here we are almost three years later. Praise God! Toby had been waking up at night crying randomly and complaining of his head/neck hurting. I didn't think too much of it because it wasn't incredibly consistent. I decided to call our Spina Bifida nurse, and of course it was the usual, "Take him in if he gets any worse." Well, nothing happened Friday, and then Saturday it seemed like all night long. I ended up putting him on some pillows in the living room and sleeping with him out there. I was hoping to keep the rest of the family sleeping. Well, we went to church and afterward he started telling me he was crying because of his shunt, and that it was hurting during Sunday School. Well, that was enough for me. I nursed Milo, got everyone settled in and Toby...

Okay. So of course I tried to title this to be able to get your attention in some way, shape or form. I really wanted people to see this if you couldn't tell. This happened tonight, and I really couldn't wait another day to share it with everyone. The picture is not super impressive since it was done by my incredibly sick husband with his camera phone. Poor guy, he was barely functioning. I know you can barely tell what's going on, if at all. This is Toby and Mommy dancing together for the first time. Now, granted, we've done the crawling dance and the on your knees dance, but never ever ever the hand in hand standing up dance. This is one of those moments that I'm so thankful that I absolutely cannot take for granted. I was able to dance with my son tonight. WOW OH WOW OOOOOH WOW! And it gets even better. I gave him the chance to sit back down, and he asked for his walker. Then Gracie and Toby danced for the first time together. I know that Gracie doesn't unde...

Well, everyone is sick at my home, which means everyone is taking a nice long nap. It's cloudy outside and I'm avoiding the laundry. Nate is sitting opposite me writing on one of his books. (It's starting to get ridiculous! : ) But I'm proud of him.) So I feel inspired to write on my blog. I always tell him that writing a blog is so much better than writing a book. I don't have anyone telling me to change my grammar or that I am being too wordy. I just write, instant gratification. : ) Today I feel truly sad. The internet can be such a wonderful place of encouragement and insight, but it also opens the door to sadness. I have so enjoyed being on the BabyCenter website support group for Spina Bifida Kids. It has been more encouraging than I could have even imagined, and for that I am thankful. Today I went on (hadn't been on in a while) and found out that a sweet lady on there has lost her baby girl. She was a baby with Spina Bifida who was going in for a shunt ...

Well, it sure has been a while since I've been on here. Don't worry I'm still planning on keeping this up. You see, my problem is I have an incredibly rebellious nature. I know shocking, right? Well, it was recently told to me by an extremely close friend that I am a private person. (that is except for my blog) Well, being the rebellious person that I am, I just didn't feel like sharing all that much on here. If I was going to be a private person then I might as well be a private person all across the board. Why have one venue in which to share, right? Well, wrong and selfish, so therefore double wrong! (The comment by the way was not meant to be an insult in any way shape or form, and I completely understand that. I was being sensitive.) So here I am coming full circle realizing that I might be viewed certain ways even by close friends, but that doesnt mean that I need to stop doing something that has been an outlet for me. A truly wonderful way to open up without havi...

Well, I'd just like to say how incredible it is that God takes care of things. Since I didn't know about the appointment beforehand, I had to bring Milo along with me (he's still nursing) and then of course Gracie to help with Milo. So picture Milo in his stroller, Toby in his wheelchair with Gracie pushing, and Mommy pushing Milo while trying to balance a day's worth of stuff in a bag and a walker. It took forever to get through the parking lot. Luckily Nate (my husband) was able to meet us there just in time for Toby to get called back for his CT Scan. The problem with the CT Scan was that most kids at Toby's age need to be sedated. Well, praise God, we never have. The problem with that was that we weren't prepared if Toby had needed to be sedated. He had already eaten that morning. So they warned us that we would be sent home if he didn't cooperate with them. Meaning we would do this all over again another day. So I went in there with him, and as soon as ...

So today I found out that tomorrow is clinic day for Toby. About every 6 months we end up having a long day of appointments...tests, doctors, x rays and ct scans. The thing about these appointments is that the night before can easily put me into a panic. I never know what tomorrow is going to hold. I don't know if tomorrow will be uneventful. If They will check everything and we will leave on the same road that we came on. Or if tomorrow will change the next days, weeks, months or even years. Walking into these appointments I always have in the back of my mind that they could find something on the CT Scan or see something else wrong. I never know when a new surgery will be scheduled or a new type of therapy will be added. The whole process of these days is overwhelming for me. I don't know if this will be the year that they have to sedate Toby for the tests, or if there will be a cute nurse that he will flirt shamelessly with. I guess that's the scary part. I just don'...

This is Toby. This is Toby's bike....Well the bike we want Toby to have. Weve heard about these bikes for at least a year now and have really wanted to get him one. The problem is they are not the normal bike price...to say the least. We are working on raising money for this bike for Toby. It uses hands instead of feet to petal. It helps with balance and strength and honestly it just looks like fun. One of the hard parts of Toby's life is just trying to keep up with the other kids. He does an incredible job when crawling, but since we are really trying to work past that he's been getting frustrated. I really believe this could help encourage him to keep working. well, I got online looking for a used one...no luck. Then I found this website www.adaptivemall.com They have what they refer to as a Kiddiepool. You put in a request for a piece of equipment and people donate towards it. I am so excited about this. Nate and I have been working on a garage sale to help raise money t...

I've been wanting to write this for a while, but with three little kids keeping me busy it seemed like my time was cut very short. Poor Milo has a double ear infection, roseola and is teething on top of it all. Needless to say he didn't find it needful for me to have any extra time to sit down and write. It's been a while since this story actually took place, but I thought it noteworthy enough to come back to. There are aspects of our lives that are hard, and there are aspects of our lives that our wonderful, but then there are those aspects of our lives that are hard and yet so incredibly wonderful at the same time. Hope that makes sense! My husband is the youth pastor at Leon Valley Baptist Church, so of course our children are regulars in Sunday School. (It always makes me smile when their attendance charts are completely full.) Well, for a while there they were studying different miracles that Jesus performed. If you are at all familiar with the Bible I am sure you are ...

This is just a continuation of two previous "Our Story" entries, so don't read this until you've read the earlier ones. As we walked out of that small room into the open the nurses all stopped what they were doing and tried to give encouraging smiles and sympathetic looks. How little I knew that day how much I would come to hate those sympathetic looks. Dr. Greig walked us to the front and we made an appointment for the next week to ask questions and get some answers. We opened the door and walked into the waiting room where all the happy pregnant women and their husbands sat awaiting their appointment. I felt like I was branded with the word "defect" and somehow everyone knew and could tell. My heart ached like I have never felt before. A guilt that is indescribable came over me. Flashes of mistakes that I had made ran through my mind. Missing prenatal vitamins here and there, eating junk food, drinking coffee. I had no idea at that point how often I would ...

Toby's therapist unlocked one of the drop locks on Toby's KAFOs last visit. Well, I wish I had a "before" video. But there is a HUGE difference. Keep praying for Toby. This video was done with my phone, but I think it's still incredible!!!

I just wanted to write this real quick because it was on my heart and I wanted to share. I have been shocked to hear about so many of you who are reading this. There are people from our church, people from support groups, facebook, family and friends. There have been so many of you who have shared words of encouragment and understanding with me. Thank you. If it were not for the encouragment of others I don't believe I would take the time to continue sitting here to write. God has been so good to us and to me personally. Your words of encouragement have been such a huge help to me. I really wish I could explain it to you. Every time someone sends me a note or stops me at church to tell me that they read something, it means the world to me. (You all know who you are.) God is using you and your words to show me His grace daily. Please keep on commenting, keep sending me notes, keep stopping me on the sidewalk. I am so thankful for each and every one of you. If you'd like to recei...

This is just a continuation of the previous entry..... so don't read this until you've read the first part of the story. Nate was working at a car dealership at the time and he got off work to make sure he could go to my appointment with me. I had no idea that walking through those office doors would change my life forever. The nurses were incredibly kind and were talking happily and telling me all the things they were seeing. Then they became quiet. They were still friendly, but they kept looking at the spine and taking pictures. Then the big giveaway happened. They moved me and my husband to another room. They wanted to get better pictures of the baby on a 3-D ultrasound machine. I kept telling Nate that something was wrong. “It’s taking too long.” I said. He just patted my hand and told me to wait to see what the doctor said. Then another giveaway. The doctor came in and kept patting my leg and asking me if I was okay lying down while they were doing more pictures. I said I...

I wrote this a couple years ago. I wanted to start keeping track of everything I felt and everything that went on during the beginning of our new normal. I know that some of the women reading this blog are pregnant with babies who will have spina bifida. I wanted to share my story, especially for you. “Don’t worry. This is just a precaution. We are sending you to a specialist. I really don’t think anything is wrong.” All of these words were said to us by our sweet Doctor Price after my eighteen week sonogram. He explained to us that something looked funny about the baby’s head, but everything else looked great. The doctor only thought the baby’s head looked flat on one side because of the way he was positioned in the womb. For safety’s sake only, we were sent to a specialist in fetal monitoring. We had the sonogramist write on a piece of paper the sex of our baby and seal it in an envelope. We wanted to find out by ourselves. My husband was hoping for a boy, and secretly I was too. We...

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.

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 a...

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 l...

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 ...

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 play...

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 store...say...like 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 th...

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 ...

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...

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...

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 he...

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 ba...

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 Kidshealth.com 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...

Today I was reading about Noah. I have heard this story again and again. I have even told this story again and again, but today it struck a chord. Today was a lonely day when it comes to coping with Toby's care. Today felt like one of those "in the boat by myself kind of days." Today was one of those days when I wanted to sit on top of my house and scream out a long list of things I deal with day in and day out. I wasnt wanting to scream in the angry sort of way, but in the please can someone understand this. I am not just talking about the trials and the hard times, but even the triumphs, sometimes especially the triumphs. There are aspects of Toby's care that I don't share with others because Toby will not always be three and I want him to one day choose what he wants to share with people. Even in writing this blog there will be parts of Toby's life that will be a closed book, parts of his life that will be left for him alone. There are those days that makin...

I can count a million times People asking me how I Can praise You with all that I've gone through The question just amazes me Can circumstances possibly Change who I forever am in You Maybe since my life was changed Long before these rainy days It's never really ever crossed my mind To turn my back on you, oh Lord My only shelter from the storm But instead I draw closer through these times So I pray Bring me joy, bring me peace Bring the chance to be free Bring me anything that brings You glory And I know there'll be days When this life brings me pain But if that's what it takes to praise You Jesus, bring the rain I am Yours regardless of The dark clouds that may loom above Because You are much greater than my pain You who made a way for me By suffering Your destiny So tell me what's a little rain So I pray Holy, holy, holy Is the Lord God Almighty Mercy Me

The first month of Toby's life was spent in the NICU of Greenville Memorial hospital. It was one of the scariest months of my life. We dealt with multiple surgeries and times when we thought we would get to go home only to be dissapointed again. It was also a very lonely time in my life. There were plenty of times I would drive to the hospital to nurse Toby only to be told that he had just been fed a bottle. Those moments were lonely and frustrating. Moving to texas one month after getting out of the NICU we ended up with multiple trips to the pediatric ER at Christus Santa Rosa. Every time I would sit in those tiny ER rooms looking at my little baby boy with the ugliest purple hospital gown barely hanging on him. It was miserable. When I picture kids in the hosptial it's hard for me not to picture my miserable little baby boy in a purple hospital gown with obnoxious teddy bears all over it. Recently, Jamie (one of the women who truly helped me through all those ER visits with...

The weird things I say on a regular basis If you don’t wheel yourself over here right now im gonna…. Don’t you stomp your hands at me….. You take those brakes off right now young man Watch out for their feet Don’t run over your sister Watch where your legs are Big pushes, not little pushes Don't run over your friend The incredible things I get to say on a regular basis You can do it You’re so strong Just two more steps Keep on going, almost there I’m so proud of you You did awesome I know you’re tired, but you can do it Mommy’s right here I’ll help you if you need it, but you don’t need it I promise to catch you Look, I’m right behind you Look how fast you’re going You did it, baby!!

I have a child with special needs? When my friend, Kari, asked me to write something for her blog, which was created to be a ministry for moms of children with special needs, I really had to pray about what to write because I do not really see my three year old Matthew as disabled. Yes, he has been diagnosed with spastic diplegia cerebral palsy, wears braces all day, walks with a reverse Kaye walker, receives occupational, speech, and physical therapy twice a week, and gets botox injections every three months in his legs. He has seen more specialists than this article will allow space. He spent two months in the NICU before he could come home, and has had surgery (achilles tendon lengthening) on his legs. He still needs his wheelchair for any long distances like trips to the zoo and we have a handicap placard for the van. So, to the naked eye, at first glance, yes, we have a disabled son. But look just a little longer, and you will see his smile. And then you will hear his laugh...

This is my husband and Toby.

When the world first hears of your child's special needs you reach a new status in today's society. I have found that especially in today's churches you reach what my husband and I like to refer to as celebrity status. Everyone wants to talk to you, hug you, pray with you and for you. Your fridge is bursting at the seams with meals and you cant walk two steps in the church sanctuary without getting at least a half dozen hugs. Now don't get me wrong. I believe strongly that God shows us immeasurable grace through those moments. He gives us strength by allowing there to be no doubt of His love and our church familiy's love surronding us. You can conquer anything in those moments, during those constant reminders of support, love and encouragement. Then it happens. Your status changes. You are no longer the celebrity. The dust settles and people move on with their lives. However... God is still good. God is still soverign. God's grace is still sufficeint. The thing ...

We all have our stories. We all have our trials. This is not just about Toby. It's not about braces, wheelchairs, therapy and doctor's visits. This is about bringing God glory in our everyday life and in our children's lives. Yes, our lives can be filled with pain but also with a hope that other parents will never experience. Praise God for the hope in the midst of the pain. I started this blog after talking to a couple of friends about the honesty we need in our Christian lives, especially in regards to trials. We want our pain to be private. I especially would much rather "fake it" than to open the shades on the windows of my heart. Well, with this blog I hope to not only open the shades, but open the windows and the doors of my hear--all with the goal of sharing God's grace. Psalm 73:26 My flesh and my heart faileth but God is the strength of my heart and my portion forever.