Learning as we go

Well, if you've ever heard the phrase, can't live with insurance and can't live without it?  Well that's a reality in our lives right now.  We literally have been walking through this season of our lives blindly. Transitioning from working to short term disability to long term disability has come with many decisions.  And never walking this road before nor knowing anyone experienced to closely walk this road with us has left us just doing the best we can.  I assure you, we have made several mistakes in this process.  I have no problems playing dumb and asking hundreds of questions, but even at that we still don't make the best decision.  And each time we make a wrong decision, there are always hurdles to overcome!

On Saturday, when I opened my mail I discovered another letter outlining that our insurance has been appealed.  There are so many loops and holes in the Obamacare system.  Somehow when my husband goes on disability,  his lowest cost of insurance is COBRA for himself.  That idea is absurd!  This also means that I'm probably going to have to repay the past six months of our insurance!  Arghh!!!  It seems that I am most likely going to have to purchase an insurance policy for me, we will have to pay cobra for Zine, and my kids are on medicaid.  My life in many respects is governed by the government.  And it is not beautiful and it is not as wonderful as one could envision it to be.  It causes me much much stress.  It frustrates me beyond belief.   So I begin another battle...another insurance battle.  I find myself often praying that God would find favor for us in this process.  And sometimes He shows Himself powerful!  He is powerful all the time, I just don't always position myself to see His power.

I think I even blogged about it, we received letters a few weeks ago that Zine had to go to two different doctors, one in another town, for social security process.  I understood, but found it quite difficult and aggravating.  I prayed for favor in those appointments!  I prayed for smooth not difficult!  And you guys, I got two letters in the mail last week from my lovely social security office and they were letters canceling Zine's appointments.  Why?  I don't know.  But to me...God gave favor.  He gave me smooth not difficult!  I love it when God shows up like that!  And when I feel that God is not showing up, I need to take a moment to position myself, my emotions, my thoughts, so that His power can be seen! 

And as I dive into my next insurance battle this week, I pray for smooth not difficult.  I pray for great clarification!  I pray to NOT have to pay thousands of dollars only hundreds!!  Better yet, I will just pray I have to pay nothing!!

I hope that none of my friends ever have to walk through these waters of disability and insurance battles, but if you do, I will be honored to hold your hand!  I have wished for someone to hold my hand and help me through this season of paperwork upon paperwork, insurance battles, and appeals.  So I hope my wisdom is never needed but if it is, I will be honored to walk with you through this season.  And if you're someone reading this that I don't even know, please don't hesitate to comment! I would help perfect strangers to keep them from walking through the difficult waters alone!

Headaches and Hospital Visits

When you find yourself in a situation where there seems to be no answer....

That's where we have been the past month. 

Our sweet Chloe has been sick for a month. Literally she has done what was absolutely necessary to do and otherwise she has been in her bed. Most often asleep. She has had a headache that will not go away. We ended up in ER with her on her 16th bday. Brought her home, she felt better for week or so, we followed up with neurologist and was told if she had another headache to call.  On Aug. 31, I called and reported a headache.  We even saw the neurologist that morning and the neurologist then sent her to the ER.   Chloe was never 100% after this hospital visit.  On Sunday, Sept. 4 she began taking prescribed medicine for a headache.  She had already started some vitamins that are supposed to help with headaches.  All of this has helped but hasn't alleviated the pain.  She took that prescribed medicine until Thursday when she had to come off of it.   At that point, the neurologist wanted us to try a different medication which we did but it did not help!  So on Friday, Sept. 9, (Conner's 18th bday), the neurologist sent her back to ER!  

Can I just say I didn't even want to tell anyone we were at the ER.  I told two people and that was it!  Really...one would think I would have no pride left anymore but it must run deep in my soul!  I didn't even want to tell my friends we were there.  I was embarrassed. And then when we got a report that was disconcerting I didn't want to share that either!  Really those Smiths have so much going on to add one more thing would be crazy!  People are going to think we are hypochondriacs or they are going to think we must really be living in sin for all these bad things to be happening.  I didn't even go to church on Sunday!

Why do we convince ourselves of those things?  Probably not many, if any, would think that!  But I sure can convince myself of what I think people will think!!  And then Sunday night, Chloe cried and said mom what are people going to say about me?  My response...it doesn't matter Chloe!!  Let people say what they want.   Ummmm....thinking I need to take my own advice and apply it!


Please pray that we can figure out how to handle these crazy, terrible, horrible headaches.

This has become a regular site at our home.  She just has felt so bad!!

Sunday, Monday and today she has seemed better.  Her pain has been down...not gone but down.  When she gets out and tries to do things her pain comes right back up.  Yesterday I took her for a dr. appt. and an allergy shot and I ran an errand and she was back in bed as soon as I got home with her.  Today she got up did her online Spanish class and went back to bed.  She then got up again,  went to work and stayed for art class (which she's not done much the past month) but came home and felt bad again.  I went to check on her a bit ago and found her crying.  She was so pitiful.  She said mama I'm not well.  I think I'm better but then I try to do something and I feel rotten again.  She cried and said I'm ready to feel better!!  Broke this mama heart!

Her MRI at the hospital on Friday has revealed something new as well.  So please pray for a peace for all of us and that we would be able to understand clearly and have clear answers as to what's going on in that brain of hers!  This is new territory, new words, new meds, new diagnosis!  We have much to learn I think!  I don't even know the questions to ask most of the time.  And when I do ask questions, I feel like there is no answer.  So I'm not sure if we will ever understand exactly what is going on in that brain!  On a lighter note, she says she thinks too hard!  She just needs to quit school and her brain will be just fine!!

It is so hard to know what to say and how to deal with the stress this has brought in our lives.  I think we are on better ground emotionally and then something brings extra stress and it's like we are on overload again.   My body has entered slow motion today.  Just don't even feel like I have the energy to hold my head up.  Even if there is nothing wrong but migraines, learning to live with them is difficult!  Especially when you already have a disease that wreaks havoc in your body!!  So what normal people deal with as migraine, hers is compounded because it affects every part of her body and it definitely takes her longer to build back her strength when she's been down.  So the headaches and the muscular dystrophy aren't working well together.  Not to mention the medicines she takes and adding new ones and how they interact with each other, with her MD, and with her Central Nervous System is quite overwhelming not only for me but for the doctors we have encountered as well.   Please cover us in prayer right now as we muddle our way through this season!

Living with a 7 year old who suffers with anxiety

Just thought I'd give you a glimpse of what it is like to live with a 7 year old who struggles with anxiety.

My 7 year old typically starts her day somewhere around three am with her heart beating fast fast and her mind thinking scary thoughts.  Sometimes this happens as early as midnight.

Move to mom's bed so she can settle down and go back to sleep.

Food must be routine.  She gets her food and that's all she will eat for days, weeks, and sometimes months in a row.  So yes, sometimes cheese puffs are breakfast for months at a time.

There is this addiction to her Lovey.  If he is misplaced for even seconds she loses her cool!  And never mind Lovey getting washed anymore.  That totally sends her over the edge!  And if she goes anywhere with a backpack or bag, Lovey is very carefully placed in the bag.  And sometimes, Lovey has to stay in the car but trust me that is always an issue!

There are many moments when she is sitting and playing or creating so nicely and then something doesn't go exactly like she wants it to go or her line she drew isn't as straight as she wanted it to be and you might hear yelling, paper crumpling, wailing, or any other a sundry of outward expressions.

Oh wait, ask her to pick up her things...no way!  That overwhelms her and sends her over the edge. So you may only ask her to pick up one thing at a time to try to avoid this mental and emotional breakdown.

And because of feeling overwhelmed all the time, school work is very tedious...especially reading!  And literally, it is because everything is so hard for her to process and reading takes a lot of processing, she has trouble wanting to give reading the needed attention because there is too much work involved in it and her emotional system is over worked already!

There is a constant need to be with mom.  Mom seems to be her main security.  So when I say often I can't go to the bathroom, the store, the gas station, etc. alone I really mean that.  And if I do get out alone, I have to tell her I am leaving, give her hugs over and over again before leaving.  And even at that often she's crying when I leave.

Some of her fears have been very well founded...what if dad gets sick and dies...what if my dad falls when I am at home with him.  What if...those concerns are valid and we have had to try to deal with them as she has been able to voice them.

Cover school on Fridays...we finally gave that up.  It was too much drama.  She would literally sit in the hallway and cry the entire time she was there.

Church, dance, and other places we might go sometimes she would go and then even in some of her favorite places, there will be tears at times!

And can I say...that is literally a glimpse of what we have been dealing with.  I could keep adding to this list.  And you know we have to come through these seasons most of the time before we can share openly about them.  We struggled to share openly about these before.  We know that if you've had dealings with her over the past two years, you've probably encountered some of these issues.   We also know that some people can say well she just needs discipline.  But we know that is not true.  But well meaning people often judge incorrectly.  So we've not discussed much and we've done our best to try to protect her during this season.

We knew all these things we were seeing was not who Krisann was.  Krisann is the most fun-loving, sweetest child!  May be our sweetest child out of all three.  So when we slowly began to deal with all these issues at one time, you can imagine the emotional struggle we had.

So when I give you a glimpse of what we have been dealing with, I must give you an update.

Yes, I agreed to start my 7 year old on anxiety medicine.  Yes it killed my mommy heart.  Yes I take my 7 year old to see a psychiatrist.  Yes I take my 7 year old to counseling every other week.  But yes it made a difference! And yes, I am glad we made those decisions.  The counselor told me something that clicked and helped me see her in a new light.  Krisann is a product of trauma.  She is a trauma child.  Her formative years were classified by one trauma after another.  So I've been learning a lot about children of trauma.  I've been learning a lot about dealing with feelings and how we can learn to communicate feelings.

I'm happy to report that she has now slept in her bed 6 nights in a row.  Yes, we have rewards in place.  But she's doing it!  And that's huge.  I'm positive she would have never slept a night in bed without medication.

We successfully are going to cover school and to Classical Conversations.  I stay with her but we are going.  That's better than last school year.

She's not cried at church in quite awhile with the exception of one night.  She still needs to know when I am leaving but other than that she is good.

In the past month, she has chosen to stay at home while I go to the store and that is amazing progress.

I still seem to be her security a lot of times, but she is settling down some about that as well.

She has gone outside and swung on the swing set by herself.  Before medicine, she wouldn't step foot outside alone.

I am able to devote more time with her to school and in just a few weeks, I can see a huge difference in her.  I have no doubt, that over this year, she is going to blossom educationally!  This child will read well one day!  We are making progress for sure.  But once again, reducing her anxiety is allowing her to have more room to do hard things.

Continue to pray for our sweet girl and for our parenting skills as we seek to raise all three of our children in the middle of stress and trauma!

Whose battle line do I stand on?

It's no secret that marriage has seasons that are extremely difficult!  We've all been through them.  And if you haven't then please come counsel us!  I just think it is part of living with and loving each other.

I personally have had to do a lot of praying lately!  It's no secret that Zine has gotten on my nerves over the last couple of months!  In our relationship, I am constantly questioning is this from the disease or is this just part of being married or is this just a transition phase we are in.  I have prayed a lot that God would soften my heart!  I've asked God to show me where I have been dealing with things incorrectly and show me where improvements need to be made on my end.  I can't change Zine but I can change me with God's help!  So...I've been doing lots of soul searching and lots of praying.  Kinda like when my mom first had alzheimer's disease...the same questions over and over again would drive me bonkers.  So I did a lot of praying that God would help me love my mom well in the last years of her life!  And over time, God changed my heart and has allowed me to love well.  So the same thing has been going on in my heart over my marriage.  God help me love well.  Soften my heart Jesus.  Show me my wrongs!  Etc.

And oh my goodness, one morning this week God smacked me over the head!!!!  Zine and I were having our morning discussion over how much help he needed/wanted and what he didn't need/want.  We have a routine but sometimes Zine likes to improve routine!  Or at least thinks he is improving routine.  And the ending is never good when he does!  So here I sit and Zine opens the door like he's ready for me to come help him.  So instead of just getting up and going, I say do you want my help this morning?  Zine looks at me and says, Do I want your help?  No.  But I think we have discussed that help is the best option.  So why did you ask me that question?  My response was simply I just am making sure that you still want help!  And Zine replied, Get behind me Satan!

All of a sudden I felt like God smacked me over the head.  Here I have been blaming Zine this whole time for all these issues we've had going on here.  But once I began to pray that God would change my heart and show me where I was imperfect in our marriage, He did just that.  God said, look Karen, you thought in your mind you were being nice and considerate but in essence the enemy is using that little attitude to his advantage.  And you are allowing the enemy to use you on his side of the battle line!  Wow!  What a thought to process this week!

I have been on the enemy's battle line.  I have allowed the enemy to use me to create tension in our marriage.  I have not seen it that way at all.  I am so grateful that I began to pray that God would show me where I could improve and where I was wrong.  Seems it took a smack on the head for me to see my place in the enemy's line up!

I think I need to pray more regularly for God to show me where I am being used by the enemy.  Whose battle line do I stand on?  Just because my actions seem right and good in my mind doesn't mean that it is God working in my life.  I have a battle to fight and I do not want to fight from the enemy's line!  My prayer is that I begin everyday asking God to show me the battles of the enemy and ask Him to help me stand not on the enemy's line but rather stand so that my eyes are focused on Him but at same time never losing sight of my enemy and open my eyes to the ways of the enemy in my life!

Abraham Lincoln once said, "Sir my concern is not whether God is on our side; my greatest concern is to be on God's side, for God is always right."  God is always right.  And God promises to be on my side!  I need to be concerning myself with whose battle line I stand on each day and not allowing the enemy to use me for his schemes!