It needs to change.

If anyone is an example as to why the state of NC needs to be able to hire their own in home aids, we'd be first on the list.

I just 'lost' aid number 21 (since I've been keeping track) and with a track record like that over a three year period, that means the next one won't stick around either.

It's not because we are a hard family to work with. It's the system. It's broken and it doesn't work for the little children that it is supposed to be supporting.

1) You have to have your CNA and be employed with an agency in order to become an aid for Liam.  Liam doesn't even require "nursing" at all. But because a CNA is mandatory and you have to go through an agency, we can't just get an awesome nanny or hire a good friend. And having your CNA doesn't mean much to begin with anyway. I typically have to train every single aid who comes in on how to feed Liam through his g-tube. Apparently g-tube feedings isn't something home health aids need to know when getting their level 1 CNA.

2) The pay is ridiculously poor. The most defenseless people in our society are children and the most defenseless of these are those with special needs yet the gov't can't even pay the people charged to care for them more than $8.50 an hour. With no possibility of a raise. I can get an amazing aid in here, have her working for me for a year, and she will still only get $8.50 an hour. It's offensive to expect aids to come in here, put in the time, and never get rewarded for the good care they give. There is no reason to stay in any one home if the work is difficult. They can move on with no regard to past clients until they find the easy jobs for the low pay. Aids have told me clients they work for that require only a few loads of laundry, making dinner, and watching soap operas with them. They tend to choose the soap opera jobs instead of working with Liam in his stander. It's the same pay.

3) The pool of people to choose from is of poor quality. I hesitate to say anything negative about the people who have decided home health care is their career of choice, but after 3 years, I know it's the truth. The agency's agree with me. Generally, the people getting their CNA 1 don't care about the home health of the people they are treating. They are looking for easy money.  Now, I said generally, because we have had a few good aids in here, ones who we were sad to see go, ones who used being a home health aid as a stepping stone to greater things. Those women were literally irreplaceable because they are so few and far between.

4) NC does not yet allow you to hire your own aid. It was presented, we almost had the option, and then it was tabled. Numerous other states have this option in place.  It is beneficial for so many reason:

• It cuts out the middle man. If we don't want to go through an agency, we can hire someone ourselves and that means the aid gets higher pay because no one has to pay a middle man. It''s a win-win for the state and the aid because it is more cost effective.
• It allows the parents to screen and choose who we want to hire instead of relying on what the agency thinks would work.
• If you do not have the skills to budget and hire an aid, the agencies are still there to work with you and hire someone for you. However, the families that can plan and budget would have the option of going on their own to find the best aid for their children. Families that hire their own aids have higher retention rates versus having to go through an agency.
• The pool to choose from for an in home aid becomes vastly larger. Instead of being limited to CNA's, you can choose your grandma, your friend, a nanny, or a baby sitter. Since I am training the CNA's on how to work with Liam anyway there is no reason I couldn't hire someone with out a CNA. Anyone can learn to take care of Liam, you don't need a CNA to do it.
• Every aid that comes in my home gets to know our routines and where things are. It's a safety issue. My family is exposed to a continual stream of random people that I can't do anything about because if we stop aid services for more than 90 days Liam loses his medicaid benefits entirely. So, we get people in here for a few days to a few weeks who quickly learn where everything is and it scares me to know that so many people in our area are so familiar with my family and our home. It isn't safe.

The situation we continually find ourselves in with the nursing is asinine.  We are constantly turning over aids and it's insane to think that the situation is going to get any better. Three years of the same thing means we will get three more years of the same thing if nothing changes at the state level.

Liam's aid at school wanted to work with him over the summer but because she doesn't have a recent CNA she can't. Here's the stupidity of that situation: she has been hired by a government agency (Liam's school) to work one to one with my son, she spends time alone with him at the school, she feeds him through his g-tube daily, and is literally his hands and his voice for him there, yet she can't be my in home aid because she lacks a CNA. It's insane.

I am so frustrated.

I have spoken with the regional medicaid manager and she was heading off to talk to her manager when we last spoke. She hears the concerns and understands the problems. It's just getting someone at the state level to care enough to do something about it. We need to change the law in order to help out these families and their children. We can't be the only ones.

Never say never

It's become time to let you all know the news!  The blessings from the Lord have not ceased since we went last year and we are close to being able to take Liam for another stem cell treatment in the Dominican Republic!

It is just over one year from when we went before and I never thought we'd go again. It is sooo expensive. Like, we could adopt a child, expensive. I figured it was a one time shot and that would be that. But as I've seen time and time again, God lays a foundation in my life that he builds on and I stand in awe as his power is made gorgeous in my weakness.

After coming home last year Shawn and I received a very large donation for our stem cell trip. When we contacted the family that gave it to us and told them we had already gone on the stem cell trip, they told us to keep it and use it for Liam for his future. So that's what we did. The money was put into Liam's savings and it has sat there all this time. We then got several more random donations this past year and have watched Liam's account blossom into what looked like another payment on a stem cell procedure. Out of the total cost needed, we are almost 75% of the way there!! It's crazy to be so close when we haven't had to try!

I was thinking about how close we are and the timeline of when we'd like to take Liam again. If it all worked out it would be great to be able to go at the beginning of the school year when therapies start anew and the school year is beginning so we could see how his progress goes within that timeline. With that thought in mind I was wondering how to get to our goal before then. How can we get the rest of the money before the end of September?

We have done some fundraising in the past and the last time we went for stem cells I bought 50 tees with 
the new blue color but the same Limitless design as when we did for our HBOT treatments years ago. Because the money literally just flowed in last year, we didn't have to try to sell the tees. We were blessed beyond measure with exactly what we needed and so the box of tees has been sitting in my garage ever since I got them.

What to do with them? Maybe this time, with the end so near, we can try to sell them. If we sold all of them at $20 each we would be 80% of the way there! :) And that is so very close to the final goal needed!

 So, as a special needs mom and an advocate for a little man with no voice, I am once again, swallowing all pride, stepping out of my comfort zone, and sincerely, humbly asking you if you'd like to help out our sweet boy and get him stem cell treatment one more time. Friends, family of friends, friends of friends, strangers, and everyone in between, we'd be so grateful if you'd like to pitch in. It's no lie when we say every little bit helps.

Liam has his own paypal account where you can donate. The monies put there go directly to him. We have tees in small, medium, and large. The smalls usually go quickest. Aidan and Ian are wearing mediums in the photo above.

 

 

Thanks for following with us and watching how God continues to work in the life of our little boy.

Our hope is in the Lord where we can soar on wings of eagles, run and not grow weary, walk and not grow faint.

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 proof that our God is a living, active father who speaks and only asks us to listen and say yes.

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