21 April 2014

Have I told you I'm going to Belarus?

I always tell my kids that if they ever have anyone question them about God's existence, they need only to speak with me for a time and I could surely show them how real He is in my life. Whether they choose to follow Him or not is their choice, but God is clearly alive and working in me.

Too many stories, too many coincidences, too many unspoken answered requests for me to ever deny that my savior lives and is actively involved in my life.

Here's a perfect example.

Last year when my two oldest kids were heading off to their mission trip in Costa Rica, I told Shawn that I wanted to go with them the next year because they work with kids in the orphanages when they go and my heart has always desired to come along side orphans and work/help in some way.  We were also sending out a team at the same time to Belarus to help run a VBS for special needs kids and their families. Both teams were there that day, being prayed over before they all headed out.  Shawn asked me why wouldn't I want to go do the Belarus thing instead since I am heavily involved in the special needs area with my church and with my own son. He thought it would be a better fit. I told him that it wasn't my thing. I am already actively involved in working with special needs kids through our church, my community, and in my own family. I didn't need to travel around the world to do more of it.

Three days later, I was driving Liam to therapy, praying over my kids and their team in Costa Rica, asking God to allow the kids to see him in a new, tangible way and praying for their safety when my prayers were interrupted and I heard, "You're going to Belarus next year."

Excuse me?

Whaaaaaaaaat??

You have to understand, I had NO desire to go to Belarus. None. It hadn't ever crossed my mind and only because Shawn asked me about it had I ever even discussed it. This was not for me. It wasn't my thing. I didn't want to go.

Yet here I am in prayer over my children when a word from the Lord comes through loud and clear, completely seperate from my prayer content, and what seemed to be for me, from way out in left field. It was bizarre.

At first I wasn't sure it just wasn't my crazy brain thinking it all on it's own, but when I realized that I wasn't even praying over Belarus and the team and that I didn't even desire to go there, I knew this was absolutely a word from God. I got the chills. I didn't say anything to anyone.

Then the team got back two weeks later.

One of the members got off the plane, went home, and immediately called me. He says to me, "You're going to Belarus next year."

UH, Whaaaat?

I was floored. If he could have seen my face right then, I was just shocked.  I threw up excuses....it's too expensive, I just don't know, it's too expensive, I'd have to think about it.  And then he said, "No, really, you are going next year. God already told me." And I'm thinking, yeah, he told me that too buddy.

I didn't tell him right then what I had heard God clearly say to me in prayer. I kept it quiet until I saw his wife, and still in a stage of unbelief, I shared with her what had happened. I told her the whole story. She said that it was confirmed to me three different times over three weeks. Pretty hard to dispute that I shouldn't go.

And God has had my back every step of the way. All of the money needed to get my team over to Belarus has been paid for. He has worked out all the plans and everything is going perfectly for our team to live courageously, answering God's call, and work with special needs families and their children.

I do appreciate your prayers for us as we go. We don't go until the end of July but things are a mess in Ukraine, which is right below Belarus, so we pray for continued peace in Belarus because the town we are in will be right on the Russian border. I don't like flying that much so prayer for me as I travel without Shawn who normally keeps me sane in the plane and of course prayer for safe travels and lives touched and changed.  <3 p="">
We will be flying into Minsk and then on to the city of Orsha.



How amazing is our God? I freely admit, I had no desire to go, but God has seen fit to send me and I couldn't be anymore excited. I know this trip is for his glory and is serving a huge purpose not only in my life but in the lives of all those who will hear the story. Because I am prove that our God is a living, active father who speaks and only asks us to listen and say yes.

28 March 2014

My Testimony

I was asked by Pastor Joe to give my testimony a couple of weeks ago. He called on Tuesday and asked if I could give it at the Wednesday night service. That gave me a little over 24 hours to prepare. Luckily I happen to know the topic very well. ;)

I asked what exactly he was looking for because I have a long and winded testimony from my first experience with a saving grace God to a testimony of what we've been through as a family over the years. He said he would be preaching on the verse in Thessalonians on praying without ceasing and asked if there was something I could share from there. I told him I hadn't ever been asked for a testimony so this was new for me but I'd see what I could do.

I had no idea what Joe would be preaching on other than that verse. I knew I would be talking after Joe's message and as I sat there listening to him preach that night, I felt like I understood why he asked me to share.

I had spent the day fasting and in prayer over what exactly I should share. I wasn't sure. I knew there were things I wanted to say but felt God leading me away from those things and focusing more on a bit of our journey over the last 7 years.

When I was listening to Joe preach, I was in awe over the direction his topic went and how my heart had been prepped by God to share exactly what I shared. I was thankful that God showed up and spoke for me, I know he was at work that night and prepared everything exactly as He wanted it. He told His story.

Joe spoke on continual gratefulness and how everything works for good for those who are called according to God's purpose. He talked about how God intentionally takes us through unpleasant circumstances and takes us through pain and difficulties. And yet, those things can work out for out good. I can so relate.

I prayed that sharing my testimony would bless just one person, that God would speak through me and that He would be seen in the bigger picture of my life. I pray that if you haven't heard me speak yet, that you'll listen and hear God's story woven through mine and you will see God's unending mercies in my life.

If you'd like to hear me speak, you can click on this link. It is the March 5th message titled Praying Without Ceasing.

You can also hear the message and my testimony from our Temple website.

You have to listen to the entire message. It's so good. Especially when you realize that Joe and I did not synchronize our messages. That's the kind of God we serve, who speaks through a mom like me and allows me to share the glorious things He's done.

The whole sermon is only 37 minutes, I'm a bit long winded, at 12 minutes at the end.  So if you'd like to just listen to me it's the last 15 minutes of the sermon.

Whew! God is powerful stuff!


https://itunes.apple.com/us/podcast/pray-without-ceasing-audio/id325048943?i=273850713&mt=2
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24 March 2014

Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.



 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

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18 February 2014

It shouldn't be this hard

Liam needs total support and that means without a wheelchair accessible van, he has to have a good car seat that provides proper positioning and sufficient support.

 We were approved, easily, for a special needs car seat last year. So what could be a problem?

The DME (durable medical equipment) company we work through, NuMotion, had recently merged or bought out a company that had recently bought out another company. With Numotion, efficiency would be more streamlined, the steps of the process would be posted on your account on their website after you log in so you could always see exactly where you were in the process and what next step was needed to get the equipment to your door.

It's lovely.

However, NuMotion doesn't carry the different types of special needs car seats that are available on the market today for you to try out. They can't show up at my door, have Liam try out 4 or 5 different models and then we pick which one works best for him and our truck. They may be able to get one or two but if those don't work, you are still stuck with trying to figure out if the one in the catalog is going to be the one that works best or not. Some car seats are too big for certain vehicles, some are too wide, some don't provide the proper positioning for Liam, etc.  It's all a guessing game if you don't have one in hand.

Back in 2012 we picked the Special Tomato car seat. When we tried it out Liam did seem to sit in it well, it provided proper positioning, and it fit well in our truck. Fast forward 8 months to when we actually received the car seat. Liam had had a huge growth spurt and the brand new, $1500 car seat just barely fit him. There was no way once winter hit and he was wearing thicker clothes or if he hit another growth spurt that this car seat would last the expected 2-3 years. He just fit in it.  I had his PT check it out and she was concerned as well.

After letting NuMotion know, they ordered the next size up in the Special Tomato. When we received it, our DME guy and I were shocked to see such a huge difference in sizes. This one was too big. So big, in fact, that we couldn't even get the chest strap to come within the 2 inches of Liam's neck that is required for proper safety positioning. He was even trying to position foam inserts over foam inserts to get him to sit in it right. At that point I was saying huh uh. That is not going to work. We need a different seat. The Special Tomato is not the one for Liam.

After getting approval to order a new car seat that was not Special Tomato, our DME guy was able to find a car seat that he thought might work for Liam.  He brought it out to our house, we tried Liam in it and put him in the car and it was a beautiful thing. He fit perfect. It fit like a dream.  We finally had one that would work. And for years to come too. He said he would get it ordered and it shouldn't be no time at all to get it in.

Fast forward to yesterday. My DME dude had to come to the house to fix Liam's stander. I asked when we were getting the car seat and he told me he had bad news. NuMotion won't let me get a new one. After getting over my shock and finding words to say, I asked him, "So you are telling me NuMotion said that Liam has to use a car seat that is too small for him because they don't want to get us a new one?" He said that was not what they were saying. Just that we couldn't get another one. So I said the same thing again. NuMotion won't allow a new car seat, that would provide proper positioning and safety in the event of an accident because they don't want to. NoMotion said we could get a new car seat, fitted us for one, and then said they had changed their minds and we couldn't get one. I asked for the corporate management's number.

Liam is fortunate to have a Medicaid case manager who has his back. She will fight to get Liam what he needs and she does a lot of dirty work in order to get things done. I can't say enough good things about her. It was a hassle on her end to go through the process of getting this car seat paid for in the first place and to have it not be right and NuMotion not fix it was going to have her on the phone with them immediately.

After I put in my call to my case manager I called the the corporate number and spoke with a very nice lady who took down everything I said. She said she was forwarding the information on to our regional manager and I should get a response within 24 hours. If I don't hear within 24 hours a formal complaint is auto-logged with corporate so she said I should definitely hear something today.

We started this process back in 2012.

Liam deserves a car seat that fits right, keeps him safe in the car, and provides proper positioning. It shouldn't be this hard to make that happen for him.

His normal smiley self on the way to school. Sitting in his way too small Walmart seat because it's easier than the too small Special Tomato.