secretramblingsofapastorswife

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...

So, I was sulking one day about the lack of Friday night fun that my family has. I was extremely jealous of a friend who had movie night with her family and let the kids stay up late on Friday nights. I thought how wonderful that would be, but my husband's not so wonderful schedule means that he works on Saturdays. (Its actually his earliest morning of the week) So as I sat there engulfed in self-pity a thought hit me. Why not still have Friday night be Friday night? Yeah its a bummer that Nate works, but so what if the kids stay up late? So that is when I initiated Popcorn night. Now I have to admit Popcorn night is not an original "Kari thought". It's something my parents did for a while when I was growing up. We would have Popcorn (of course) watch a movie, and then sleep WHEREVER we wanted to in the house. I can remember on occasion trying to sleep in my closet just because I could. So now Popcorn night is in my household. Every Friday we rent a movie (we rent it ...

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.

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...

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 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...

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...

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 ...

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.