secretramblingsofapastorswife

So. Life never ceases to amaze me. Never. I am almost having a hard time searching for words to even begin this post. I'm actually going to write half of it over at The Journey website and half here. The personal half here and the other there. So now I have to figure out what to write here and what to write there. HA! Okay, well yesturday afternoon I was surfing the web during "nap time" (i use that term very lightly now) And I came across a sort of graph of children's Spina Bifida Levels and what there physical outcome usually is. It went something similiar to this...Not exactly this as I'm going from memory and this is just an example. L1- walk with arm crutches. full time wheelchair user later on in life So I scroll through to find Toby's level and BOOOM!! Full time wheelchair user later in life. This is what happened in my little heart and mind. My happy picture I have had in my mind of Toby. My picture of him walking around with arm crutches as a teenager...

so what's happened since the big Galleria thing in Dallas, you ask? Well, if you are a facebook friend with me you've heard bits and pieces.. (if not ask to be my friend I can never figure out how to look anyone up on that thing) So here's what went down. After repeated messages from lots of friends from all of the country to the Galleria. One finally got a little more than a form letter back from someone, stating that they hadnt even heard from me. NOT TRUE!! I hadnt written to them and as I said before Nate had called them the very day it happened. Well, I wrote AGAIN. Explaining who I was. Within a week I had an email in my inbox from a very nice lady by the name of Leslie who is the Vice President for Simon Malls in Texas. She asked that I call her or that I send her my number. So of course I called. (during nap time so that I could hear everything HA!) She was an incredibly kind lady who was extemely and I believe sincerely apologietic. She heard me out and heard abo...

We are going through a somewhat scary time right now. It looks as though we will be losing Medicaid and SSI benefits for Toby in the very near future...say in a couple of days to a couple of weeks. This all started with Colleens post about Medicaid waivers. (I appreciate the post by the way) However, this started a chain reaction. Nate and I knew we were close to the income level cut off for SSI and were already over the income level for reguarly medicaid. We knew that when Nate published his first book that it would be putting us even closer. However, with his second book coming out in the next month I knew that it was mostly likely going to put us totally over the income level. (and yes I said SECOND book, how neat is that?) So after reading Colleen's post decided I should start to do a little research and come up with a plan. Now granted when I started making my phone calls I thought this was for FUTURE reference, not right now!! So I started with my list of contacts and my not...

I wanted to share this post from the other blog i work on that I wrote. I think its important for people to realize that sadness doesnt just end but that it is not continuous either. and that sadness is just sadness and it's okay. so click here to read. thanks for all you who take the time to read about us. Also, Toby just got casted for his new braces and we should be getting them this week or next. I'm sure Ill be putting pictures up soon

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 ...

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 ...

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 ...

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...

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...

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 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!!