secretramblingsofapastorswife

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...