Use My Voice

Speaking up about the issues I can't get out of my head or heart.

More Than A Sound Bite

I started this blog as a way to speak up on issues I care about.  Not in hopes of changing people’s minds if they disagree with me but more just to give them another point of view from someone they know. I know that my political view often differ from a lot of my Christian friends and I’m ok with that. My views are just that mine. They have been shaped through my life experience, my understanding of scripture, and what my own research and study shows me.  I don’t think we all have to agree with each other but I do think it’s important that we listen to each other.

All of that being said, one of the issues I care most about will be front and center today and I assume for many days to follow, healthcare.  I have avoided this topic here because I know how fired up we all get about it. I know it is a very personal topic for many of us on both sides. I feel like it’s important today to share my family’s journey with healthcare.

For the first several years of our marriage healthcare was something we rarely thought about. My husband worked for a large company and we had excellent healthcare. We paid very little for it and it covered a lot. We paid (and still do) a lot for medicine but we rarely needed it (my how times change) so that wasn’t a big deal.  Our first child had a lot of ear infections and required two set of ear tubes and countless antibiotics but that didn’t really phase us. It wasn’t until our second child was born that healthcare became what we thought about first in our lives when making a lot of decisions.

Two weeks after of second child was born we ended up in the ER at our local children’s hospital for 12 hours as they tried to figure out what was wrong with him.  He was lethargic, wouldn’t nurse and had a body temperature of 96. Finally someone realized that the heart monitor wasn’t working.  Well, it wasn’t that the monitor wasn’t working, his heart was beating so fast it could not keep up. You see a pediatric heart monitor shuts off at 300 beats per minute. Yes, my child’s heart was beating faster than that. Well, our 12 hours in the ER was followed by 5 days in the cardiac care unit. We learned a lot. We learned how to listen through a stethoscope, we learned how to try to convert an SVT attack at home, we learned that most likely we had a very long road ahead of us. I remember them telling me to plan at being at the cardiologist office at least once a month for the next year (at that point I had no idea how much a visit to the cardiologist would cost).

I remember getting our bill from the hospital. Our portion 10% of the total for our 5 day stay was $5,000. I can remember crying and thanking God for our health insurance. I remember our first visit to the cardiologist a couple of weeks later (into January) met his $250 deductible for the year. Once again I thanked God for our insurance.

Six weeks after he was born my husband was called into a meeting. His position at work was being eliminated and he had two choices, leave or take a new job with a $20,000 a year pay cut. So here we were with a new-born with a heart condition and were learning the very definition of being stuck between a rock and a hard place. really though we knew we had no choice. We had a child with a preexisting condition. We were screwed. We took the pay cut. We could not lose the insurance.

My husband still works for that company and 5  1/2 years later still works more hours for less more hours for less money, but we have health insurance. We pay more for it and our coverage is less (this happened long before the affordable care act was passed), but we have health insurance. During that time our oldest child required lots of therapy for his special needs. We were very fortunate that our insurance covered between 80-90% of it. That only left us paying between $100-$300 a month depending on which therapies he was receiving. He also takes two medicines for his ADHD with our insurance we only have to pay $60 a month for these. We also have a daughter with asthma  now. I never realized how expensive asthma can be. If she’s in a rough patch it can easily be $30 a week to treat it (not counting doctor visits or chest x-rays) I can tell you that between our three children our $2,000 we put into a flex spending account was gone by May of this year.

I don’t write this for you to feel sorry for my family. We are one of the ones that are blessed beyond measure. We have insurance, pretty good insurance at that. I have never had to decide between feeding my children and getting them medical care. However, we do live with the very real knowledge that if my husband was to lose his job we would be in a world of trouble. If we ever had self insure our selves, well I really don’t think anyone would take us. Not if the affordable care act is stuck down anyways. You see I have not one, not two, but three children with preexisting conditions.  Guess what, I’m not the only one. There are parents out there today who will choose between feeding their children and getting them medical care.

You can say government has overstepped its bounds. You can say the affordable care act isn’t good enough (which I would be inclined to agree with you on). You can say you don’t want socialized medicine (which the affordable care act is far from). Just remember that this is an issue much bigger than sound bites. This is an issue that strikes at the heart of millions of Americans.  For many people this is the issue that determines what they will able to do with the rest of their lives.

 

 

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What’s In A Name?

Names are important to us as people. They are part of how we identify ourselves. Before each of our children were born my husband and I spent months deciding on names. Each of our children have a family name and a biblical name.  It wasn’t that easy though. The names had to be good names, based on people in our families that we actually wanted to name our children after. They had to be people from the Bible who were good and names had meanings that we liked. One of out favorite boy names was nixed because it meant dog.  Our last names are important to. They connect us to a larger group than just our immediate family.

There are other names that we use to identify ourselves and others as well. Names that give us an idea of what they do or more about who they are. “She is a doctor” or “He is a soccer player”. Then there are the other names, the ones that describe our differences or disabilities. These names are often ones that we try to avoid. I know because I have been there.

From the time my oldest child was 6 months old he was talking. He was putting sentences together shortly after his first birthday. By the age of two he could talk to you for an endless amount of time about every piece of construction equipment. He was happy and for the most part easy-going. He wasn’t a temper tantrum thrower. All in all he was really easy. Then around three differences started to show up.  He had a difficult time with independent skills, he was starting to show some social awkwardness, and yes at times got stuck in his own world.  He also, really, really, really, did not like loud noises, or when plans changed after they were made, and of course there were food issues. His teacher at the time recommended we take him to a developmental pediatrician. So we did and thus began our search for a new “name”.

What we got there would be played out over and over again for the next four years. It would go something like this, “Well, yea, he’s kind of quirky, but who isn’t?” or “Well, yea he has some autism like traits but his social skill are to good for it to be that”. At five we  received an ADHD  and possible visual processing disorder diagnosis, started occupational Therapy for a fine motor delay,  and started on medicine (that’s an entirely different post one day).  Our pediatrician and therapist agreed on a sensory processing disorder diagnosis at six.  Somewhere around six or seven we saw a neurologist which was my least favorite visit of all. This time my child got called quirky and odd with him listening.  So I sat on the side of the road with my child that afternoon as he cried and asked what quirky meant and why we had to see so many doctors.  At that moment I knew it was time to end our quest for a name for whatever my child’s disabilities were.

So for the next few years we did our best. Two years of occupational therapy, six months of physical therapy, so on and so on. We learned about sensory issues.  We home schooled because we felt like we best understood his needs. He made great progress. He learned how to pump a swing, ride a bike (not well but he can do it), and he developed  a passion for history, science, and the environment. When he was seven years old he requested we get “An Inconvenient Truth” from Netflix and watched it multiple times. He is really smart.  However, there are gaps. Really big gaps. Gaps that are hard to explain when you don’t have a name that covers all of your child’s disabilities. Yes, I know that plenty of kids with ADHD function just fine in school. I know sensory issues are hard to understand. No, I can’t explain to you why he loves to learn and loves to be read to but can only read at a first grade level. At times over the years I found myself almost envious of parents who had a name for what their child’s disabilities were. I know most of these parents really have it much worse than we do but sometime I wish I had one or two-word answer to put on the form under “any special needs”.

We started a new kind of therapy tutoring combination this winter. We received a new unofficial diagnosis of dyslexia. This made things a little easier to be able to say the camp leaders or church teachers, “He has dyslexia. He will need some help with reading and writing”.  Today I met with the wonderful woman who heads the school where he has been going. We went through his end of the year test. We talked about his strengths and the areas he struggles with. We talked about the gaps.  At one point she looked at me and said, “I really feel like he has a form of high functioning autism”.  I didn’t know if I wanted to beat my head into the table or hug her, or both.

So, we are getting ready to start on another round of name searching.  Not just for the sake of having a name but so that we are able to get him the best help we can.  He’s older now and understands more. He knows he’s different. He also knows how amazing he is.  I covet your prayers. I pray we find the right doctors this time. I pray that the process is quick. I pray that through all of this we are able to show him that whatever the outcome is that who he is so much more than the name of his disability.

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Lessons Learned From Tubing

Our family went tubing up in Helen GA yesterday. It was the first time we had taken our children to do this and I have to admit I was a little nervous about how they would do. Especially the youngest.  Well they all loved it. Baby Girl’s only objection was that she couldn’t swim down the river by herself (did I mention she’s two and by myself is her favorite phrase?). Also, since they had never been before my husband and i thought it was best that we strapped one of the boys tubes to each of our tubes. My oldest who is 10 thought this was silly but he was overruled.   We had a great afternoon and everyone is ready to go back.  Afterwards we ate and talked about our adventure.  Everyone shared what they like and didn’t like about tubing (the biggest dislike was the fact that the water was freezing).  While we were talking my oldest said something that stuck in my head, “I was glad I was attached to you when the water was rough or when I got stuck on a rock, but when the water was calm I would have liked to be on my own”.

These words instantly shouted in my head, “This is how we are with God”. We know when we are in rough waters, when times are tough in our lives that we want God with us. When we are stuck on a rock and don’t know how to get off it and feel desperate we often cry out to God. But what about when we are floating along in the calm relaxing waters?  Where is our desire for God then?

Here’s the thing I realized while tubing yesterday. We don’t always know when the rough water is coming or where the rocks are until we are upon them. Many times yesterday we would get through one set of rocks or faster moving water and would come upon a section that was smooth and peaceful. I would lay back in my tube and allow myself to drift along. The next thing I knew we weren’t moving at all. We were stuck on a large rock with fast moving water all around us. It was up to me to get myself and my five year old unstuck and navigate the water. If I had been paying attention I probably could have avoided getting us stuck in the first place. I would have seen the rocks coming.

I have spent this spring is a wonderful  Bible study by Jennie Allen called Stuck. It’s all about where we get stuck in our lives and how God wants to set us free from those places. She ended the study with us reading John 15:1- 17. This is where Jesus talks about him being the vine and us being the branches. We are told over and over in this passage to remain or abide in him.  Not to just call out for him when times are hard. when we feel stuck and the water is moving quickly around us. When we remain in his love I think we are more likely to see the rocks that are coming. The rocks don’t go away the water is not always smooth but we are less likely to get stuck.

“I have loved you even as the Father has loved me. Remain in my love. When you obey me you remain in my love, just as I obey the Father and remain in his love.” John 15:9

 

 

 

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