A few thoughts: Belarus July 2014

I've been asked how my trip to Belarus went and it's been hard to render an explanation of my experiences in a concise yet comprehensive manner. Normally it's just easy to answer that it went wonderfully. And it did. But there is so much more to be said about my trip.

Visiting Khatyn, a memorial to the village burned by Hitler. Belarus is no stranger to tragedies.

I had heard of reverse culture shock and been told I might experience it after getting home to the US from spending two weeks in Belarus.  I didn't think too much of it until I got back. As I process and deconstruct my time over there I am left with many differing emotions. Thankfulness is the most prominent feeling. I'm thankful for getting a glimpse of what's important.

In a world where you wear the same clothes over and over and over because you don't waste soap and water on clothes that aren't really dirty, our walk in closets are filled with overpriced clothes and 87 pairs of shoes that we don't even need. It is a thought unfathomable over there to have such over abundance. I packed a suitcase full of clothes and only ended up wearing a few of the items because it's normal to look the same day after day there. It was a freely enjoyable experience of not caring about whether anyone had already seen me in that set of clothes that week. No one cares!

Dirt roads, clay houses, and outhouses are still common place outside the city and you use your yard to garden, not to grow grass. Every inch of the yard was used to grow food. And you use what you grow. You don't run down to the pizza place for dinner if you don't feel like cooking because there isn't a local pizza place. There are no fast food dives. You make what you eat, from scratch. No boxes of mac and cheese let alone 20 different varieties that our local market dizzyingly offers.

You see block upon block of socialist apartment housing.

Restrictions on free speech, free assembly, and religion remain high. Members of a religious organization don't even have the right to share their convictions or to carry out religious activity beyond the borders of the location where they are registered.

In the US where practically everyone here is familiar with Protestants and the Baptist faith and what we stand for, it's odd to be in a country where you are seen as being a member of a cult. Old superstitions are still spread around that you stay away from the Baptists because we might eat your children and we drink people's blood. In Belarus where there is strong restrictions on being able to start a new church, proselytize, and advertise, the way to change people's thoughts about what we believe about Jesus Christ is through direct one to one personal relationships. It was actually refreshing and a constant reminder about how Jesus lived and told people about the Kingdom. He did it one to one, person to person, by loving and reaching the people who society marginalized. He didn't use a tv station, a radio program, or an internet podcast. He used his life to tell people who he was. Joy and peace like that can not be suppressed no matter the governments control.

I was in Belarus to help a local church and to work with people who have special needs. And even our help is legally restricted. We can not teach with out a legal license or we could be arrested. And good luck getting one of those licenses.We helped run a camp for 'kids' of all ages (6-28 years of age) who were so excited to be able to come together and create crafts, sing songs, and learn about Jesus. Their joy was infectious. They would light up each day when they saw us and would yell our names across the room and come running to greet us.

Believers are few and far between there. Less than 1 in a 100 are Christians. The Russian Orthodox Church is the state promoted religion which is steeped in mysticism and paganism with Catholicism thrown in. But the joy in the hearts of the fellow believers is a beautiful thing to witness. They have so many obstacles to overcome in reference to the political climate, the history, and negative misconceptions and yet they have such peace and thankfulness in the midst of it all. They make no assumptions. It was something to be jealous of actually, because they have a deep respect for their faith, which America (as a whole) seems to take for granted. They are full of hope. Hope that the people on their street will come to know Jesus because of the joy and peace they have in their lives, even in the midst of the oppression of their people.

Belarus is a country that is not ready or able to be a democracy yet. That was something that was very hard for me to experience. Growing up in a country where we are given so many freedoms, it was hard to see the people there have so much less than we do. My close translator and guide summed it all up for me though. The people of Belarus are tired from all the wars, the fall of communism, Chernobyl, etc...  They just want peace. Even if that peace means they aren't as free as persons in the US, they are still ok with the old ways of the dictatorship because they are pretty much left alone, as long as they follow the rules.

It was a poignant response, one that filled me with an understanding of the bigger picture in Belarus. The people are oppressed and most don't even know it.

October Square, Independence Ave.,Minsk

Building built specifically for the circus.

October Square

Minsk is clean, beautiful, and safe.

I honestly can't wait to go back. I can't imagine not getting there again and living and working alongside such amazing people as we work with special needs families. I even came home and started learning Russian. I left there with a determination to try to make life easier for Belarusians in any way I can. The wheelchairs in Belarus are still wooden, education for the multiply disabled is either minimal or completely lacking, support for the special needs family is non existent, the suicide rate is high. I don't know why I have been given the life I lead here in the US, but now that I have been able to experience Belarus for special needs families and Christians, I can't not help. <3 p="">

Our VBS team, translators, and the pastor & his wife.

Thankful for new friends.

On to 1st

We are two full weeks out from the last day of kindergarten and Liam is already bored. He cried on the last day of school. It could have been the loop of Pharrel Williams "Happy" being blasted through the intercom system on continual loop, but I'm pretty sure he was sad that the year was coming to an end.

First & last day of school. Mostly just longer hair, and a crappy pic but otherwise looks the same.

We had an IEP meeting the last week of school and I learned a few things about how Liam's year and goals were going. I was surprised to hear that some goals were met and excited to hear that he was holding his head in prone for 5 seconds at a time. That is so very, very hard for him. The most important was his communication skills and seeing the progress he has made and how they are going to move forward this next year. He's got a good team on board working with the PODD communication system and will be implementing them at the beginning of the year. His aid will be wearing pictures in order to provide constant opportunities for Liam to see and use the pictures.

Liam's one to one aid was a fabulous fit for him and she worked very hard with him and for him.  She knows him really well, can read his cues, and makes sure he gets to participate and be an active member of his class. It's not a definite that she will be hired back this next year and if she's not I will be one irate momma. It's in Liam's IEP that he requires a one to one and she's perfect so we are praying she gets to come back. It doesn't make sense not to hire her back.

The dynamic duo- and look at that awesome t-shirt!

We are 82% funded for our stem cell trip!  If we keep on the path we are on it will be Sept before we will be able to go, but that's just fine. It's still early in the year and God's timing is always perfect. Please pray we continue to sell the remaining tees and if you'd like to donate anything at all, you can click on the link below. It goes right to Liam's account for his medical trip only.

Thanks for all your prayers, for following along, and the kind words of your support. Liam doesn't understand what all everyone has done to make his life better, but his family will never forget! :)

Getting closer!

We are 79 1/2% funded! We are getting closer to gettting Liam down to Santo Domingo in the Dominican Republic for another stem cell treatment. I am so stinking excited to be able to offer this opportunity for him again.

If you would like to take part in getting us there, you can donate directly to Liam's account through this paypal link.

We are also selling the last of the Limitless Tees. We have a few smalls, a few mediums, and for the larger men in your life that neeeeeeed one of these, I have several!!  This is the only fundraising we are doing so if you'd like to help in any way, every little bit adds up to a life changing trip for him!

Liam finally got his new car seat delivered last week. But something seemed off about it and when I got to really looking at it, it was definitely used. In what capacity I don't know (it could have been a model or used by a child) but the dude from our DME company said it had come right out of the box. Well someone put a used car seat in the box.  I looked for the manufacture date and sure enough, it was a two year old seat. :/

On his behalf, our DME dude was flabbergasted. I told him to take the seat and call me when they got a brand new one in.

So, again we wait.

I

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.