Another Sunday - and more housework while Pete was gone!

Sunday was another good day.  I taught the boys' Sunday School class again.  We did crafts and worked on verses.  It is a sweet time - to be in a class with my two blondies.

I went to children's church with Sam.  Even though I was willing to do it every Sunday that we had more children, the ladies at the church already made up a rotation list!  They were excited about doing it.  I went with Sam because he is still so shy, but he was fine.

Last Wednesday, I did church as Pete was still in California.  I gave part of my testimony and shared Psalm 13.  That Psalm is marked in my Bible for 2005 and September of 2009.  I shared different parts of my testimony from here and there but concentrated on why that Psalm is so important to me.

Pete got home safely Thursday evening, and we were so so happy to see him.  While he was gone, my parents came and painted Andrew's room.  I have always thought it would be neat to decorate a room for a sick child.  I have been gathering up stuff for his room for years - literally.  But we have a huge start now.  Will can trim it out with some molding, and we are looking at new floors to replace very old carpet.  That should help his breathing!  Fortunately, I must have painted his closet when we moved in!  We have his new bedding ready to go.  And Mimi bought him an air conditioner at Sears.  We moved his furniture around, but we did not have much cleaning to do because he keeps a clean, organized room.

Speaking of rooms, Peter's needs the trim and new floors, and he should be set.  Will has a huge L-shaped room.  I have been working on his room - getting extra stuff out.  I added a matching twin bed and have had a great time using old Ralph Lauren bear prints and checks and Americana stuff to cover the beds.  I have had fun looking on ebay and getting a few really good deals.  To see how much our Ralph Lauren sheets are going for - the ones we bought at the Polo Outlet years ago for $5 - is amazing.  Some are new in packages and are now being washed and used.  They are the good, soft, cool cotton.

I rearranged Sam's room and sold one quilt set at my yard sale (which was a neighborhood sale and the best we have ever had!).  I put a new one on and love it.  But now I think I will arrange it similar to the way it was before - with his Lego table under the window.  He has twin beds too, but it's important to have a neat closet and easy to play Lego table(s).

So many other projects to do this summer!  I am thinking of trying my hand at stone laying.  I am secretly hoping someone will hurry and step in - afraid not to!  We have some doors to replace and some bathrooms to finish renovating.  I am excited to get some more stuff done.  We have taken loads to the dump and have lots to donate.

I have gotten a bit off my post, but I can look back at this and remind myself what I was doing this summer! I feel the need to simplify my life, and this has really helped!

We have VBS starting this Sunday.  Pete will miss kick-off - he has a reunion at Gary Chapman's (Love Languages) church in Winston.  One of their Holy Land tour guides is also coming!  Pete should be in town until his Alaskan cruise in August.  Now that would be a treat.  But his favorite trips, of course, are the Holy Land Tours in the fall.

Thanks for reading!

Our Second Sunday

Today was good in church.  I got there and taught Sam and Will in Sunday School again.  Then I sang with the choir, which meant I did not get to talk to Pete much before church.  We were supposed to meet in his office, so I will have to work that out better next week.  Will went with me to teach children's church which just started this morning.  We did well, but I missed the sermon.  Pete let me pick out lots of flannel board sets at The Cornerstone, so that helped a lot.

Peter and Andrew told me that their dad sang (during the sermon).  Andrew said he was confused until he realized he was telling the story of Paul in jail singing praises to the Lord.  Pete is actually doing a series, and today's was on love.  He also filled in for Sunday School and had a lesson on love in there.  I told him he did not tell me he was going to sing!  He never sings!  His point in singing was that we need to sing praises before we are set free from whatever binds us.  That is kind of like my waiting room scenario.

After church, we caught up for just a minute before he took off to Charlotte to the airport.  I am actually waiting to hear that he landed in Los Angeles.  Then he has to drive 1 1/2 hours to a conference.  I hope he slept on his flight!  This was the trip I kind of wished I could take.  But looking at the week ahead, it was just not a good time!

I went back tonight to fill in for the Sunday night service.  It went well, and Andrew went with me.  Sam was in the 30's last week in Sunday School and again today!  We are keeping an eye on him, but he has had some low lows in the last two weeks.  So he stayed home with his other brothers.

We hope to get Andrew's room painted this week.  It has been on my mind for a long long time.  I wish I had the talent and means to create rooms for sick children.  I think that would be so rewarding - to give them a place to rest that they love.  Maybe one day I can work on that.  I just don't have design talent.

Our yard sale was great yesterday, the best we ever had!  It was fun to talk to so many people while getting rid of so much stuff.  And of course, I had those special guests come - my brother and sister-in-law.  I have to make a trip to the donation center this week and one to the dump, and my basement will be so clean!  The tools are yet to be done, but that is a job for another day and another person!

My other special guest was one of my best friends.  Andrew did not see her but knew she had come by the homemade bread on the kitchen island.  I have not felt well at all this weekend, so the bread has been a huge treat.  She has a gift for making bread - that's for sure!

We are still getting our bearings.  I plan to share part of my testimony Wednesday night at church - again, filling in.  I have not given a testimony out loud in many many years.  The more I look back, the more I see clearly is that my testimony is that I cannot do anything without Him.  When I mess up, that is all me!

Thanks for reading!

Thankful Today

I got Andrew's numbers  yesterday.  He was in the 900's, and anything near 1000 is good.  I was thinking that I wish he had been a little higher.  I was wishing he did not have to keep taking the meds.  Then my perspective changed this morning....again.

My mom called to tell me my brother was in an accident.  He has seven staples in his head, a concussion, and I am sure a terrible headache by now.  But he is okay.  He is usually the one helping others, so it is odd to hear he had an accident.  He is so careful and smart.  But accidents can happen to anyone.

He just sent a text saying he felt numb and tingly after the accident, and it scared him.  I did not know that until later.  So he will probably be happy with a bad headache and sore head, knowing his CT scan was clear.

He was in Johnson City when it happened, so he was near a great hospital.

I have not talked to him - only my mom and Laura.  He was securing a strap, I think, when a hook came loose.  He had all of his weight on what he was doing, so it flung him off the back of the dump truck.  I may be giving a terrible description, but it flung him off; and he hit a pole.  And he is very fortunate.

But he knows the Lord was with him.  He knows the One he teaches about and loves and talks about and professes was right there.  He felt him there when he had that fear.  I cannot write much more because I have not talked to him.

So we are all thankful.  And I found as I breathed a sigh of relief and thankfulness that I felt more thankful about other things too.  I noticed more reasons to be thankful.  God is so good.  He is with us even if we don't get out with just a concussion and headache.  He loves us more than we can imagine.

While I am so thankful my brother is going to be fine, I am also so comforted by the One Who is the Great Comforter.   No matter what, He is with me.  No matter what, He loves me.

Happy Weekend.

UPDATE:  My brother and sister-in-law came to my yard sale this morning!  He was not supposed to go to work, so they just drove to Boone.  They talked to us for a while, and he looked a little tired or like he may be hurting a tiny bit when they left.  They were going to grab lunch and head back home.  Since Saturdays are pretty busy at the rock store, it was probably good that Cindy brought him here and he was not tempted to go to work.  Looking at him, you would not be able to tell that he has seven staples in the back of his head.  He has not really had much of a headache and only took pain medicine once yesterday.  Cindy said he felt better after he ate lunch.

He did not fall off the back of the truck.  He was on the ground behind the truck and had secured one strap over a tall load of mulch.  He usually does it one way, he said, but he put all of his weight and leaned back.  It worked well for the first one, but the second one did not.  The strap's hook (that he could not see) came loose, and that flung him back into a metal pole.  He said he wondered why he was crumpled in a ball instead of laid out flat.  The feeling he felt after he got his bearings did not go away.  It stayed long enough for him to wonder IF it would go away.  So he is very thankful.  He was scared to death (which is not a norm for my brother).  He gives all of the credit to God for saving him from something terrible.

He had to get up and find help as he was in a part of the place where no one was.  He wandered out where the trucks were and was asking people for help.  A guy who had been helping him found him.  A lady there took him to the ER at a smaller hospital in Johnson City, so he was in and out quickly.  There were so many people who helped him.

Cindy drove the dump truck loaded with mulch home so the store would have it for their many deliveries.  She has driven it before, so it was nothing to her.

I was so thankful they came over here.  I knew I had to get my eyes on him today, and later I cried from being so happy he is okay.  He may get sore.  He may have some kinks in his neck, but he will be okay.  Praise the Lord!

I love them so much, and it never hurts to be reminded how much we love people and how we always need to pray for each other.

Our First Sunday

Today was Pete's first day as pastor at Middle Fork Baptist Church right near Tweetsie Railroad in Blowing Rock.  He has been preaching there for a few weeks as he finished up responsibilities at our church.  We have been going to Sunday School at our church and Middle Fork for church.  He has not yet been ordained, but that will come soon.

This morning, I went from a class of people younger and a few older than I am to Sam and Will.  We had an informal class, but it was good.  Will quoted the Bible verse we were learning, and I was happy he remembered it so quickly.  Sam has problems reading and retaining things, but he seems better at memorization; so that is something we will work on more.  He asked some great questions and answered some great questions, so I know he has been listening in Sunday School!  He did not feel well, so we checked his blood sugar.  He was 38!  That was the lowest in a while, but he bounced back with some candy and then fell asleep in church while his numbers climbed higher and then dropped again.  If I went from 38 to over 200 to 80 in an hour and a half, I would not feel good either!

We had some friends join us this morning, and I got an encouraging text to help us get started.  It's been a journey already - one I will write about later.  It's been a quick change and very tough in some ways.  But deep down, I have a peace about where God wants us to be right now.  And Middle Fork has treated us as if they have always known us, such a kind and loving group of people.

I thought the last month was a whirlwind with so many activities, responsibilities, changes, extra jobs to do, etc.  This one will be pretty busy too until the middle of the month.  Then, we hope we can settle in more.  Pete is making a trip to California, and I wish I could go with him!  I think being in a new, warm place free to read and rest sounds wonderful.  But the schedule we have is too hard to turn over right now.  And that is okay.  We either glide through time Daddy is gone, or we have some big (BIG) stories to share when he comes home.  California is far away, but it's not as far as Israel!  We trust this will be a gliding time.  And if not, we know Who will take care of us.

I will write more as we start our ministry at Middle Fork.  We are praying and trusting God to show us what we need to see.  And we pray for His guidance.  And we pray we let go of ourselves and make Him our number one priority.  Because in doing so, we want to show His love to draw people closer to Him and to everlasting life.  It's an opportunity to step out and share the good news.  The great news.  The most important news.

Thanks for your prayers!

Part 5

The medicine is his infusion meds.  They are shipped to us once a month.  Shipment is set up and can only come on certain days due to the dry ice and speed it needs to get here.  It is extremely expensive, and I always watch for "the box" and get it in as soon as possible.  Without these meds, Andrew's immune system numbers would plummet.  He was be not only susceptible to everyday illnesses but also diseases.  There is a huge concern about these patients getting pneumonia or something they could not fight off.

Once again, I was so mad.  I had worked and researched, and we bought a new plan with the same company.  It is expensive, but it had a deductible we could somehow meet if needed.  It was hard to know if his medicines were covered, because they are all very vague and not very knowledgeable.  But we did the best we could.

So he missed over a month, and THEN we could not get his old insurance coverage cancelled because our company was so backed up.  It took another two weeks to get it all straightened out.

By this time, I had been given a nurse case manager.  She totally understood the problem and was as frustrated as she could be.  She went several levels above her to get him off the old insurance.  It was a miracle, looking back, that she was able to do that.  And I prayed that during that time someone who could change some of this would pay attention.  So another couple of weeks went by, and Andrew's numbers went even lower.

Then he got the infusion meds.  And he was not in the hospital or too sick during that time.  

I will tell you this.  When our nation's leaders talked about the new health plans, I listened.  And they have not done what they said.  Either they did not know what they were talking about or did not care, I don't know.  But it's frustrating to know they do not care about people like my child.  I am not disrespectful, but I cringe when our leaders don't tell the truth.  And this time, it affected our family greatly.

His numbers have gone back up, I am sure.  We actually go to the doctor tomorrow to get him checked out. We are three years into a hopeful two year treatment.  That is discouraging to me.  The longer it drags out, the more it seems it will be forever.  Not really forever, but for the rest of his life.

I was just thinking tonight of a prayer Peter prayed for Andrew one time.  Pete and I both were praying for something specific, and Peter just prayed for Andrew to be healed and to "never have to worry about this stuff again."  After hearing Peter's prayer, we changed ours.

He still has bad seizures every once in a while.  They used to be at home at night, with us.  He has had one in class, one at a track meeting, one before a race, and one while walking to study on campus.  It's scary when my phone rings, and he is not with me.  I hear an ambulance and try to rule out that it's going to Andrew.  He still gets sick at the worst times.  But he keeps going.

Andrew and Sam do not have perfect bodies here in this life.  So they are not tied to this world as tightly as some.  And that can be a blessing if it is looked at and taken the right way.  

We want to be "normal" and not have to fight so much, or learn so much, or travel to doctor appointments instead of fun vacations.  But this is our story.  And our job is to live it the best way we can.  To live it well - in the eyes of Jesus.  I keep hearing about my "story" in different places from different people (because we all have a story to share), and that perspective has really helped me.  

Nichole Nordeman has a song that talks about going back and doing things the easy way.  She says that if we don't know midnight, we won't know morning.  And it's true.  If we don't have the trying times, we cannot see God work in our lives.  God is my constant.  My only constant in a sea of change.  I am so thankful for that.

Life here is not about a perfect life.  It's about living a life that points others to Christ.  I know God brings lots of happiness and joy here on this earth, but it pales in comparison to what He has for us for eternity.  And I need to remember that more.  I need to remember that tough times have a purpose.  My job is to lean on Him and trust Him to show us the way.  It doesn't mean giving up.  We need to take care of our children and take care of our responsibilities, with His help and guidance.  I need to give Him my burdens and stop taking them back.  And in weird-sounding way, I need to be thankful for the things that He allows that will do good things in the big picture.  So songs like this help remind me to keep perspective.  God is love.  He loves me more than I can imagine.  He loves you that way too.

Sunrise (Nichole Nordeman)

If I had the chance
To go back again
Take a different road, bear a lighter load
Tell an easy story

I would walk away
With my yesterdays
And I would not trade what is broken for beauty only

Every valley
Every bitter chill
Made me ready to climb back up the hill
And find that...

You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?

You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise

There's a moment when
Faith caves in
There's a time when every soul is certain God is gone

But every shadow is evidence of sun
And every tomorrow holds out hope for us
For every one of us

You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?

You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise

You alone will shine
You alone can resurrect this heart of mine

You are sunrise
You are blue skies
How would I know the morning
If I knew not midnight?

You're my horizon
You're the light of a new dawn
So thank You, thank You
That after the long night, You are sunrise

You are sunrise

Part 4

So instead of Sam staying until Friday, the doctors released him around noon on Wednesday.  We came home with syringes and vials, which I mentioned earlier.  It was awful.  The needles were so long that we had to push them in at a 45 degree angle just to continue to hit fat in Sam's leg.  We dreaded the shots but were getting better checking blood sugars which only requires a finger prick.  Sam adjusted quickly to those.

Andrew went to see a pediatric neurologist at Duke within a week after that.  They worked him in, and the doctor we saw treated us like an unimportant work-in.  I was not in a mood to take his ugliness.  He also barely looked at us, told us that medication was not working, AND told us that Andrew probably needed brain surgery to get any better.  It was devastating.  Meanwhile, my mom had Sam in the lobby trying to figure out what in the world to give him to drink.  It was an awful, miserable trip.  And I was just about beside myself.

We came home and decided to never go back to that doctor again.  Andrew did better, and we have an emergency medicine to give him when he has seizures.  It is still hard and scary, but the medicine helps more than it doesn't help sometimes.  Andrew used to have little seizures a couple of times a year at the most.  His face twitched, and he got stiff; but he never stopped breathing.  These seizures were different, and they were awful and scary.  I thought the old ones were bad, but I would take them back as fast as I could given the choice.

Sam started back to preschool a few weeks later.  I went back to work part-time.  Someone had taken my Nashville trip, and life in the Admissions world went on fine without me.

I only worked part-time, because I went to school to check Sam before lunch and stayed to count his carbs and give him an insulin shot.  We would go into the bathroom, but it was still so traumatic for both of us that we ended up going home most days to do it.

All of that changed several weeks later when we went to the endocrinologist in Charlotte for the first time.  When he saw me, he hugged me.  He gave us more information and asked if I wanted a pen.  He showed me the pen, and I could not even believe how easy it was and how short the needle is!  They are nano needles!  We still kept his 24 hour Lantus with a syringe for over a year.  But the other shots are all now given with a pen.  Sam had his first insulin shot with a pen at lunch at South Park Mall.  We were in the bathroom, and he did not even cry.  We were both so happy to have the pen.

I continued to go to school for lunch every day through kindergarten.  Will had started checking Sam before lunch which helped a lot and saved me a lot of time each day.  But the schedule took its toll.  I resigned from my job when I was fortunate enough to find a part-time job at our pediatrics office.  God's hand was in all of that.

Sam continued to do better.  And we have continued to learn.  And we have had to learn more than the medical side.  We have had to learn to ask for help at church or school or wherever Sam goes.  He can only go to one house for a sleepover without us - my sister's house because my niece learned early on how to give shots.  In fact, we took Andrew to a new doctor when Sam had an eye appointment.  And my sister, friend, and niece went with me.  My sister went with Andrew and me (anticipating some bad news), so my friend and niece took Sam to his eye doctor.

Andrew's issues took a big turn in February of 2011.  We found out his immune system was hardly working.  That meant lots of tests.  Lots of frustrating and scary news.  And weekly infusions.

We have also learned how to try to get what we need.  We have learned that our insurance company does not understand, nor do they care about people with severe immune system problems, seizures, or diabetics (mainly test strips which are very expensive).  I have waged many battles with them - that they started.  I could not just sit and not get what they needed.  And it was eventually covered, so it should have been early on - before it wore on me emotionally and physically.  I have talked to the Insurance Commissioner's Office, some top people at my insurance company, AND the Attorney General's Office.  I felt so alone during that time.  Pete listened, and I had a friend who helped more than I could ever have imagined; but it was a battle full of frustration that no one would listen.

They ruined the graduation of my first child because of the battle and stress.  And they turned me into someone who could think of little else during the time I was fighting the biggest battle.  I know I almost drove everyone around me crazy.  We finally were able to get the test strips we could prove they owed.  And then I dropped it.  I had to.  But that was not to be the end of our battles!

Occasionally, they still pop up and deny things - only to fix them soon after.  But before they fix it, Andrew will have a seizure because we cut back his seizure meds to make them last longer until the next refill was approved.  One night, I called a number and had them put  a note in their system that Andrew had a seizure on his way to the starting line of an indoor race.  It was during the time I was battling for a seizure med that they said I needed to pay over $800 for in one month.  I had told them if something happened to him during that time that I would take action. Soon after, the meds were approved, as they should have been initially.  I prayed through the whole process and understand the frustration of not getting what is covered, because I have lived it different times with two different children.  My insurance company had hung up on my doctor's office.  They were vague about paperwork they needed.  One doctor said he had never had to do so much paperwork for his other patients!

Then this past December, we ran into a new road block.  With the new healthcare stuff coming, I tried to be ready, but the ball was dropped; and Andrew went a few weeks without a crucial medicine.

Part 3

We were already so exhausted.  Sam was moved to the pediatric wing.  Pete was still staying with him at night, and I was there during the day.  Except for a few moments in the evening, we were learning everything separately.  We were trying to keep things pretty normal for the other boys who were in school and running.

Tuesday night, Andrew did not feel well.  He seemed tired and out of sorts.  I told him just to sleep downstairs, so I could keep an eye on him.  He woke up around midnight and started talking about geometry.  I flipped on a lamp so I could see him since he was not making sense, and he started having a seizure.  I worked with him and prayed for it to go away.  I was not all awake myself.  Then he started into another one.  It was rough.  So I called 911.  I told them that my husband was at the hospital already with my youngest son and that Andrew was looking bad and that I needed help immediately.  As I waited for them, I tried to get Andrew to come out of his seizure by talking to him, yelling at him, and pleading with him.  I woke the boys up upstairs and ran to get Andrew's medicine (the 911 operator must have told me that - I don't remember that part clearly).  I opened the front door and turned on the porch light.  I was running around like a crazy person running from Andrew back and forth to try to get help more quickly.

Finally, they came. We only live a couple of miles from the ambulance station.  Two young guys came, and one took a quick look at Andrew who was not moving at that point.  He scooped him up and said they would have to take him.  That about did me in.  I remember running outside behind him (after giving the other guy Andrew's meds).  I put my hand on his back so he would not fall backwards as he jumped up in the back of the ambulance.  At that point, I was crying and pleading with God to help him and pleading with Andrew to wake up.  I was not doubting God was there.  I was crying out to Him in a way I had never had to before.  I knew He was listening.  It's almost like crying out to Him (literally) was the only thing I could do.

Someone, a paramedic or fireman, told me I had to calm down.  And I remember telling him I was really not crazy.  Then I flew back in the house to throw on some clothes.  I asked the boys to call some people and ran to the car.  As I took off down the road, I remember Peter sitting on the front porch.  I could not even stop for a second to assure him that Andrew would be okay.  He was not breathing when they put him in the ambulance.

I called Pete and flipped my phone open to speaker.  I was crying and telling him to get someone to stay with Sam and to run down to the ER.  He told me later he could only hope I was exaggerating.  As I pulled into the hospital parking lot not three miles away from our home, Pete called to tell me he was with him; and he was breathing.  Relief flooded through me.

I ran into the ER and asked to see Andrew.  They asked for my insurance card.  Unreal, I know.  I needed to see Andrew.  But I did have it with me and soon was on my way back to see him.  I know if Pete had not called, I would have had to jump over the counter; but fortunately I did not have to do that.  I hurried and gave the unfeeling person my information.

In the back, the paramedic handed me Andrew's medicine bottles from his pocket.  The other apologized for taking him so quickly.  I thanked them and assured them that I called them for help and appreciated their fast help.  When someone is not breathing, you don't want someone to move with turtle speed.

In a little while, I ran and got the car while Pete walked Andrew out of the ER.  He went back upstairs, and I took Andrew home where my parents were already there waiting to help us.  It was a terrible night, but Andrew was okay.  Sam was okay.  And that was what was most important.