Back to Duke Today

We took off this morning and went back to Duke.  We got to Durham a little early, so we shopped a little at one of my favorite TJ Maxx stores.  It brought back memories ~ Andrew and I always stopped there after our Duke or Chapel Hill appointments when he was much younger.  We saw the Red Lobster where my parents, Dwayne, and I ate before watching Whitney and her all American race at Duke many years ago (too tired to figure out the year!  But I do remember she was ranked 30+ in the nation and was 17th of the girls who stepped up to the line and ended up 3rd with a huge PR!).  Andrew got to go to a bookstore, so he was happy about that!  Then we headed on over to Duke.

Dr. Luedke just started running in the mornings with his dog, so he was in great need of coffee.  And I thought, "Oh no."  But it got better from there.  He talked mostly to Andrew, and I wrote lots of notes.

Andrew was happy to find out he looks like a good candidate for surgery.  But there is more testing first ~ even before meeting with a neurosurgeon.  I have been coasting a little (or a lot) for the past few years in my medical stuff.  I have been able to at least handle what has come our way.  I admit that I cry sometimes feeling overwhelmed.  I get a lot of headaches thinking or overthinking things.  I get stomach aches and feel sick sometimes.  But that is because I am not medically inclined.  And today, I felt all of those things and more as I listened.  I'll spare the details of what made me feel sick, but I will share the next steps we discussed.

Andrew will go back to Duke for another MRI, an FMRI (functional MRI), DTI (diffusion tensor imaging), and neuropsychometric testing.  All of these sound like a breeze compared to what he has been through and what will come, should he want to continue on this path.

After these, if things go well, he would meet with a neurosurgeon who would discuss in more detail what the surgery would involve.  Andrew would also have another surgery where they would place electrodes on his brain to track his seizures - like what he did before, except invasive.  This is where I wanted to just go on and walk out of the room.  But Andrew is shaking his head to continue.

Andrew's information would be in conference again by a team of doctors.  They would try to determine if they could get what they need without causing harm to his movement or speech or anything else.  They would hope to gain as much of that information as they could with the additional testing ahead of time.

The kind of lesion Andrew has on his brain, front lobe, and that it is on the right side should work in Andrew's favor.

If the surgery is successful, he would have a 50-60% chance of being seizure free.  If the surgery does not stop the seizures, it could reduce their frequency and/or severity.

Andrew does not have that many seizures (well, he was doing well until spring).  But he is at risk for SUDEP (death) and in danger for other accidents, and he is restricted in what he can do or where he can live.  So it's a "pretty significant intervention for a pretty infrequent problem."

Up and down.  Up and down.  That is how I felt when the doctor talked.  But he was making sure Andrew understood what he was saying.  Then, he turned to me and asked me how I felt.  I told him we wanted Andrew to continue to do what he wanted, and we would go from there.  He is going to try to get him scheduled for the tests by the end of the year.  Andrew has finally met his out of pocket for the year (after our insurance decided to process things differently, so it cost extra this year).  Our premiums will probably double (per our BCBS letter), and the deductibles and out of pocket continue to rise exponentially, so we will have to start saving now to provide what he needs.  The ACA has almost put my family under the last few years, but God has provided.  He will continue to provide.  I must admit that I wish I had knowledge ahead of time of how that will happen.  I pray for the healthcare situation for my family and many others I know who are affected.  That is a factor in all of this.  I am trying to get Andrew some sort of supplemental insurance to help the cost after the huge premiums.  I hope we can use some of the tax money we have paid in for years to take care of our own child.

So we left with a future appointment, a letter telling BCBS not to withhold meds because that could kill Andrew in just a few days (the doctor worded it a little better), and expectations of new testing pretty soon.  And I was glad to get out of there.

This morning, I dreaded going.  I was driving Sam to school, and Mercy Me started singing "Even If." 

"I know You're able and
I know You can. 
Save through the fire by Your mighty hand.
But even if You don't,
My hope is You alone..."

Oh, the tears started rolling down my cheeks.  For some reason, Sam had gotten into the back seat, so he did not see me.  I am glad I got that out of my system before we went.

This morning, I read Psalm 13.  You can read the story of that Psalm in my blogs about Sam and how the Thrashers gave it to me when I was holding the landline phone at the hospital while stretching to hold Sam's foot while they prayed with me over the phone.  I feel I start out whining but then praising God for Who He is and what He does.

Psalm 13King James Version (KJV)

13 How long wilt thou forget me, O Lord? for ever? how long wilt thou hide thy face from me?

2 How long shall I take counsel in my soul, having sorrow in my heart daily? how long shall mine enemy be exalted over me?

3 Consider and hear me, O Lord my God: lighten mine eyes, lest I sleep the sleep of death;

4 Lest mine enemy say, I have prevailed against him; and those that trouble me rejoice when I am moved.

5 But I have trusted in thy mercy; my heart shall rejoice in thy salvation.

6 I will sing unto the Lord, because he hath dealt bountifully with me.

I just stuck it in here, because I am sure someone else needs to read it too.  Six short verses, Reverend Thrasher said.  David goes from being "forgotten" to trusting God and rejoicing.  I want to be there too.  

I also got a voicemail from one of my best encouragers from Middle Fork.  When she did not reach me, she left a voicemail and a text.  She knew I needed to hear the word "workable" and the other word "peace."  I know God can give me that.  So I am resting (trying my best) in that.

I have had people feel comfortable enough to tell me over the years that they don't see how I deal with something like seizures in child.  They could never do that, they say.  I used to immediately ask God why I have to be that person?  Why my child?  But in my older age, these horrible things can be a blessing.  I know how it feels to HAVE to trust in Him.  I have had to CRY out to Him.  I know how it feels to be DEPENDENT on Him.  Nothing gets you like your child having something awful!  So even though I would give this back (and still keep the other sicknesses, Lord!), I know it all draws me closer to Heaven and further from this earth.  It keeps me focused on eternal things more.

We had a good, although loud at times, conversation on the way down.  I know Andrew believes Jesus died to save us from out sins and that He is the only way to get back to the Father (God), since we have all sinned.  John 14:6.  But we were off on other subjects, and we were trying to talk/debate some important issues.  And I finally told Andrew that it's a lot in perspective.  I don't have time to tear apart a fellow Jesus follower's work (by Jesus follower, I mean someone trying to live as Jesus wants us to - really, not the way we want to or the way we want to compromise or interpret - so I mean a true Jesus follower), when I should be too busy trying to point people TO Jesus and show them who He is and what He did - and then what they can do to spend eternity with Him.  We pretty much ended it there.

Dr. Luedke seemed a little impressed (for lack of a better word) that Andrew had such success in a short time in the EMU.  So I told him that we prayed, and the seizures came.  He laughed and said the EMU was weird and different, because it goes against what they normally try to do.  So I told him we had tons of people praying and one friend kept saying "Praying backwards!"  Because we all were.  Now we are all praying forward again.  And except for that one special test he may have in the next few months, I will continue to ask people to pray for no more seizures.

That's how we left it.  We appreciate all of the love and prayers.  I know that is what kept me calm, because this is hard for someone like me.  Very hard.  I don't want Andrew to have to do any of this.  I am ready to throw in the towel and get another job and get him a seizure alert dog.  And if he decides to do that, we will.  But right now, the only way to get through this (for me) is to pray.  And we appreciate all of the prayers prayed for us - for Andrew.

Thank you.  I am posting one more verse.  Short and simple.  And thankfully, true.

Philippians 4:19King James Version (KJV)

19 But my God shall supply all your need according to his riches in glory by Christ Jesus.

Andrew Update ~ September 16

We went to see Dr. Fleming in Wilkesboro on Friday for Andrew's shoulder.  He said it looked good and told Andrew what to do and not to do.  It's a good thing he is a runner and not a baseball or football player!  He is out of his sling but is limited in what he can do.  He hopes to start his food services job back this week.  I went with him last Saturday to the Hospitality House to fix dinner with Andrew and a nice young man from the high school.  Looking back over this week, I am surprised he could function as well as he did!  I was just supposed to be his hands, and he told me what to do.  I only messed up a little bit in the serving line, but I learned a lot and was so appreciative of the way Andrew worked there.  And how he was.  Two older men told me I had a good boy.  They saw a lot of him earlier in the summer and had not seen him for a while.  When people showed true concern for his arm in a sling, he shrugged it off and told them he'd fallen.  When they pushed for more details, I told him later that that is how lying (even little ones are) is.  It gets out of hand and bigger and bigger fast!  We went to see Dr. Zimmerman Saturday for a place Andrew showed me on his leg - MRSA again.  It's already getting better, but we are not ready for something new to keep popping up!

We have not heard from Duke, but Pete remembers them saying maybe 4-6 weeks.  I am expecting them to make an appointment to discuss their findings.

We weighed Andrew when we took him to the peds office - 121.  And that is after me stuffing food in him (as much as I could anyway) for a few days after we got home.  He is now getting his appetite back, but I would guess he'd lost 5-6 pounds at least.

He told me today he thinks he is about 75-80% back.  He has texted me a few times about the same things, looked at his schedule each day to see what classes and where, and just dropped out of conversation suddenly.  But he is aware of it and feels he is getting better.  We so appreciate his professors and everyone being patient and understanding with him.

We went to the cross country meet today.  It was fun to watch and talk to people I had not seen in a while.  Andrew really enjoyed it.  I only knew three of the runners on the team!  I recognized more girls.  But it's totally different now!  But it was still so exciting.  We look forward to conference on our home course at the end of October.

Sam has helped me clean some today.  Andrew and I loaded his truck down last night and added a bunch of stuff to the free yard sale at our old church.  I tried to sneak it in before Kristin saw me, but she drove up while we were unloading.  Nothing like last minute donations!  But we put them in their appropriate places and hoped they found good homes!

We have been working on Sam's room and making it more of a teenager room - not too much though!  We have about 2/3 of it done.  So he helped me clean other places today and clear out some things.  I am constantly "clearing out" and have no idea where all the "stuff" comes from.  So if it's not dear, it's going out the door!  We went through our kitchen cabinets and drawers yesterday and sent a lot to the sale.  I still wish someone from TV would come and use their talents on my house!  The clearer it gets, the better I feel!

Peter is out working with ASU police tonight observing.  I pray for him as he sees things he is not used to seeing.  And I have tried to remind him of some of his special qualities - like helping people with health issues like his brothers.  Someone appearing drunk may be diabetic or having a seizure.  And I hope he will be able to use what he has seen in his life to help others.

We are still so thankful to be home.  We are so thankful for all of the prayers prayed and the people who prayed them.  I saw my little "just turned 13" year old sitting in that chair in the corner of Andrew's room with tears in his eyes, and I felt terrible.  But then I had to remember this is our life, and we just have to keep going and doing what we need to do.  Pete and I were careful to spend time with him, when we were not in the room; but he liked coming to check on Andrew.  Sam and Daddy used the tunnel, while Mom and her dizziness did better crossing the busy street.  Sam and Pete found a "favorite" Mexican restaurant near our hotel.  They also had fun shopping for candy for Pete.  Sam and I kept Cook Out busy in the evenings and took Andrew breakfast from McDonald's each morning, whether he could eat it or not (we always hoped!).  Sam and I went to the "big mall" and looked in the toy store and my favorite stores (that we don't have in Boone).  We found the laundry at the hotel and washed clothes after a few days.  Sam was always so helpful and seemed good to just spend time with us.  We read some at night and tried to swim, but it was chilly and rainy a lot.  Peter and Will seemed fine at home.  Will called each day to check on Andrew.  Peter prefers to text.

Thanks again for praying.  We keep praying for healing and direction.  We also appreciate the food, the cards, the money, the hotel gift cards, and all of the other support we received!  It helps ease the burden of a trip you don't want to take when  you know others are praying and take time to let you know they care.

We hope to have some good news soon!  Don't forget to go to church tomorrow.  Sundays are always better with church!

Home from Duke!

We got home this afternoon and are so thankful to be home.  While we see pictures of people vacationing in the little mountain town where we get to live, it makes us even more homesick!  We were happy to climb that mountain and hit the fresh, cool air.

We left Wednesday morning at about 7:00.  We got to Durham and waited for another call.  The one we had earlier said they would call back at 1:00.  Then the 1:00 call said they would call back at 3:00.  We got a call and went on to the hospital admissions where Andrew checked in, and we waited.  And waited.  The man in admissions said they did not have a bed for Andrew, when the caller said his bed was ready.  We finally got up to the 4th floor late that afternoon.  He was hooked up and ready to go by 6:00 or so.  And then we waited again.

Thursday came and went.  Andrew had some tingling in his hands, and he was already getting a little closed in - the room was very small, and he had to stay in bed.  He studied Chemistry.  We had a word puzzle match.  He did not sleep.  He stayed up very late Tuesday night and slept only a couple of hours on Wednesday.  He drank a lot of caffeine.  One resident frowned on that, but then I realized she frowned a lot anyway.

We had instructions on what to do.  We hit the button (I called it the Jeopardy button) if he had a seizure.  And they would run in to help.  He had an IV sticking out of his forearm, in case emergency meds were needed.

Friday came and went.  He had more tingling.  We know some people go the EMU (epilepsy monitoring unit) and never have seizures.  He was off all of his meds, so he had to stay in the bed.  We did not talk among ourselves, but we were feeling like he may not have one.  Andrew was feeling very closed in.

On Friday evening, on the way back to the hotel, I cried.  I was so disappointed that the trip seemed to be in vain, unless we wanted to just stay and stay and stay.  But then I remembered that sometimes we have to just claim victory before we see it.  So I asked people on Facebook and through text messages to pray at 6:00 p.m.  Pete was on the phone with me and had his hands on Andrew and prayed.  And I slept better.

The next morning I got a text from Andrew that he'd had a seizure at 1:40 in the morning.  It was bad, Pete said.  Then the doctor came in and said they needed five seizures.  We felt a little dejected again.

So we asked people to pray again.

And here they came.  The next one was with me.  Andrew started taking very deep breaths and went so fast into a terrible seizure.  I hit the button and yelled for help.  As several nurses responded and worked on him with oxygen and suction, I held his big toe and prayed.  I prayed out loud that God would help him.  And He did.  Everything calmed down.

Pete and Sam came back not long after.  I took Sam to get a sub at Subway downstairs in the hospital, and Pete called me while we were in line to tell me he'd had another.  We rushed back upstairs as he was coming out of it.  So that was three.

Andrew had tons of leads on his head.  They were there to record information during a seizure.  He was also videotaped by two cameras pointed straight at the bed.  During those seizures, and because the leads had been on since Wednesday, some came off.

We were concerned that the information would not be complete without all of the leads, but someone told Pete that the one person in the hospital who could fix them over the weekend was "busy".  So that was our first concern.  Andrew did all he was supposed to do.  We prayed for seizures.  He had them, but they could not keep the equipment fixed?  We became very frustrated.

Someone did come and fix the leads, but in the six seizures he had, some information was not recorded.  And he was in the EMU.  The neurologist told me that the ones they got fully were enough.  And the others confirmed what the good recorded ones said.  But we still were not happy that those other seizures may have been in vain.

All in all, he had six awful, horrible seizures in 24 hours.  Sam and I had gotten in the car to leave, and Pete called again.  So we ran back in to check on him.  He had another one soon after.  And the last one was on Saturday night around 11:30 pm.  By that point, they had already started him back on one of his meds.  Pete insisted they restart all of them.  He did not think Andrew could take much more.

One nurse said every seizure he had was like running a marathon on his body.  And he ran six marathons in 24 hours.

So on Sunday morning, the neurologist came by and told me he could send Andrew home with a fourth seizure med, or he could stay another day.

Andrew was still hooked up to the machines, but he was so out of it.  He would not wake up for anything.  He ate nothing on Saturday or Sunday.  He barely drank.  We could only wake him up enough to take his seizure meds.

So I decided he needed to stay one more day.  I was afraid to take him home.  And Pete agreed.  Andrew's shoulder or arm had been injured in the third seizure.  Andrew's back had started to hurt so badly that he was almost in tears.  When he was out of it, he asked if I could go to Boone Drug and get some aspirin or something.  He never takes pain meds.  So Pete had rolled him onto his stomach to try to relieve the back pain.  And he started having a seizure, so they had to roll him back.

After that seizure, he was crying out in pain.  We could not touch his right hand or arm or even his finger tip.  He kept pointing to his wrist and then his shoulder.  They came in to x-ray but only had orders for his wrist.  He continued to writhe in pain, and so we asked for the shoulder x-ray (that we had asked for in the beginning).  X-ray came again and did his arm.  And Andrew continued to cry with pain.  We finally had let the side of the bed down and somehow that helped.

They gave him pain meds in an IV.  He slept.  So when the doctor came in on Sunday morning, I told him that Andrew was in severe pain and asked if someone could possibly check his shoulder.  He ordered the shoulder x-ray.  Hours later, another doctor we had not seen before said apparently Andrew's shoulder was dislocated.  We waited a long time for anyone to come.  And I was gone by then.  And am glad I was.

Pete said it was awful.  Andrew was so out of it but came to as they put a big needle in his shoulder and moved it around.  And then a man and woman pulled and tugged his shoulder back into place - we hope.  No wonder he moaned in pain.

This morning, the same neurologist said we would follow up with ortho.  He said that dislocated shoulders were common with the type of seizure Andrew has.  So I wondered why when I wondered out loud a few times if his shoulder could be dislocated, why did they not check it?

There are some things we learned while in the EMU.

1)  We thought Andrew would be checked on much more frequently than he was.  So it was a good thing we both were there and could switch off.  Sometimes our backs hurt from leaning over the bed for long periods of time making sure Andrew did not pull off his leads - which was our job.  We were the only ones who seemed concerned about how much he did or did not eat or drink.  At times he was monitored, and then he just was not.

2)  We thought we would be told what to do to help Andrew.  And we were told some things.  But we should have let the bed down flat if at all possible during a seizure to minimize the wear on his back.  While we did not want him to choke, it would have helped to have him down and turn him on his side.

3)   We should have thrown a fit about his shoulder.  We knew something was wrong if he was in that much pain.  The nurses looked helpless and told him to try to "breathe through it" ~ and that was just not possible.  I saw my dad writhe in pain with his shoulder and I should have pushed harder.

4)  We should have written down specific questions to ask the doctor.  Communication was not good, which was probably why the leads were not fixed in a timely manner and his shoulder hurt way too long.

If we had known how wearing it would really be, I don't know if any of us would have gone!  But Andrew literally had to suffer to get the information to see if he has other options, other than more medication.  So we will be thankful they got the info and super duper thankful he is done and okay.

As I write this, Andrew finally woke up.  He had a long bath.  It takes a long time to get the glue out of your hair!  Pete and I both worked on his hair for a long time.  He is resting on the couch.

I am trying to email his professors and work supervisor, but he cannot remember his password yet!  So we will watch him closely the next few days and get his shoulder checked and wait for the next step at Duke.  They mentioned a PET scan - and I am not sure why.  He has never had one of those.

Thanks to all of you who pray.  We know others stay much longer in the hospital and have different outcomes.  So we are so thankful for what ours was.  But it was still rough, and we are still thankful God was there every minute.  He really showed Himself through those specifically answered prayers!  We pray that speaks to someone and shows who He is!

We prayed God would be glorified in all of this, and He has been!

My new favorite song is "Salt & Light" by Lauren Daigle.  Here are the words.  I love the part where He "redeemed my story" and "let my life be a song revealing who You are" ~ gives me chills!

"Salt & Light"  Lauren Daigle

Oh the beauty of the King
You make righteous those who seek
You have written and redeemed my story

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are
For You are salt and light

Oh the love that set me free
You bring hope to those in need
You have written and redeemed my story

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are

For You are salt and light
You are love's great height
You are deep and wide
A consuming fire

You are salt and light
You are love's great height
You are deep and wide
A consuming fire

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are
For You are salt and light
You are salt and light
For You are salt and light
For You are salt and light

Getting ready for Duke

I keep reminding myself that these next days are tests - not surgery.  But I feel apprehensive.  Pete and I agree it is just backwards to hope Andrew has seizures that can be tracked.  He will have an IV in case rescue medications are needed.  That's what we are headed into!  But God will be with him, and us.  And I know that in my heart.  And when I know things in my heart, I just have to remember not to get caught up in the moment.

I have packed most of my stuff and Sam's.  I have Andrew's extra stuff packed - pj's, blankets, movies, etc.  I wish we were packing for vacation.  But we are not.  I just hope the trip is not long.  I hope it's fast and helpful and what he needs to know.

Pete and I have worked to get some of our responsibilities done or covered for the rest of the week.  I am heading to bed soon to read and go to sleep early.  I am so tired.  Being dizzy makes me so tired every day.  But I am still going, and I am thankful for that.  I have an ENT appointment in September.  I will never complain about aches and pains again when I am not dizzy!

Sam turns 13 on the day we leave, Wednesday.  We won't know until that morning what time we need to be at Duke.  So we will leave early and get the call on our way.  They will wait for Andrew, but we want to get there and get done!  If he has a later time to check in, we hope to find somewhere special to go and play some games or something.  He won't complain about spending his birthday that way.  He is a team player for sure.

My parents are coming to help at my house, so people will be in and out at all hours with Will's job and Peter's internship on different ends of the day.  I am glad they will be here some.

It's cool today.  Feels like fall.  And I am thankful for all God gives us.  He is giving me more and more peace.  I know, because I have felt a weight lifted off my shoulders.  The devil tried to pile stuff on today - frustrations, irritations, and ugliness.  But it floated off - mostly.  I believe in spiritual warfare, and I am so thankful God helps me.

Thanks for those who pray.  We don't need good luck or happy thoughts.  We just need and ask for prayers.  Those are what work.

I will try to update while we are gone.  If I cannot, I will once we get home.

Thanks again!

 

1 Thessalonians 5:16-18New King James Version (NKJV)

16 Rejoice always, 17 pray without ceasing, 18 in everything give thanks; for this is the will of God in Christ Jesus for you.

When You Cannot Drop Your Child Off At School...

I love looking at pictures of college drop offs.  I love seeing the transformed rooms.  And I remember how I felt when I was dropped off.  The first day was hard, but it got easier as new friendships were made and new independence was found.  Pete remembers too, and we laugh because we both cried when our parents left!  I tell him (even though he did not know me yet!) that he should have called, and we would have cried together.  

I always dreaded thinking of college drop off for my boys!  I knew I wanted to have the kind of relationship with them that they always knew they were welcome at home!  I have tried to make sure they know when they grow up and out that we want them to visit often!

But that's not how it has worked out.

Andrew went to talk to a school about 1 1/2 hours away with Pete.  He was so excited that they wanted him to run and would give him a scholarship.  The scholarships, athletic and academic, would help; but the school was very expensive.  But Pete was determined he could go wherever he wanted, because he'd worked so hard.  And he said we'd find a way to pay for it.

I was the one who took him to orientation and got a completely different feel from the feeling they described.  I could not shake it and remember talking to the "very animated during the presentation" school leaders about a couple of concerns about Andrew's safety while in a residence hall.  I felt like I got the eye roll and looks to each other of "helicopter mom" which I totally did not appreciate.  So I kept praying for peace about it, but peace would not come. I tried to chalk it up to lack of faith or just ongoing concern I've always had for Andrew and his health.

We shopped for his college stuff.  He's a minimalist, so it did not take long!  We found a great Tommy Hilfiger preppy comforter set and cotton sheets at TJ Maxx.  We got some navy blue towels and wash cloths at Walmart.  We bought a few dishes and a plastic box to put under his bed.  And I think we were done!!!  I wanted to enjoy picking those things out.  But I could not get peace.

One night, about a month before he was to leave, Andrew had a terrible seizure.  It was one of the worst, and we sat at the kitchen island late into the night after he needed to get up and get something to drink.  And we talked.  And he told me he was afraid.  He was afraid something would happen, and no one would be there to help him.  He had never talked like that before.

And there was the email from my aunt.  My aunt can tell you what she thinks, but she had never really told me what she thought I should do about anything!  But she sent an email and told me that sometimes when we are trying to follow what God wants us to do and have faith, that we are missing His direction.  The reason I could not have peace was not because I was overprotective.  It was because Andrew was not supposed to go there!

But Andrew did have to decide.  And he did.  And fast forward to Plan B.  Plan B was the best plan all along, and God knew it.

Andrew has been able to run at Appalachian most of five years - figuring in some injured seasons.  He joined his dad as an all conference cross country runner - the first father-son duo to do that.  And he did it in the very difficult Sun Belt Conference - had one of the best races of his life at the best time!  He was coached by coaches who knew him from birth and knew us since college.  He won The Bear in 2015 which is organized by his coaches and people who work with him at school.  He has had professors who have watched him grow up.  My friends have observed him over the years and reported back to me things that other parents would never find out (nothing private!) - because their children didn't get to go to school with friends and family.  I know some do, but Andrew's experience has been so unique.  Even more than Peter's who goes to Appalachian too.  Because (good for Peter but not for Andrew) some people remember Andrew because of his struggles.  But they have also had a front seat to those successes that come. And they cheer him on, because they are not luck or flukes.  They are the work of the Lord in Andrew's life.  He has done things he should never have been able to do.

When Andrew first went to Dr. Patel in Charlotte and found out his immune system was pretty much null and void, he was going about his everyday life.  And he should not have been able to live like that!  His numbers were so low he should have been in a hospital!  He is a walking/running miracle!

Andrew never moved in the residence hall at Appalachian.  He had to live at home.  Thankfully, we all like living with each other!  He is a joy to have around, and we appreciate his help.  For him, we know he does not want to live with us forever but doesn't seem to mind it right now!

Sometimes I feel a little twinge when I see the pictures.  And I wish Andrew could have moved into whatever residence hall and whatever college he wanted.  But he would never change his time at Appalachian, so it's easy to accept and be thankful.  Now, we want him to be able to move into his own place at some point soon and be independent.  That's why we are helping him pursue this neurological testing.  And if that does not work out, the seizure alert dog and tiny house in the backyard are on the list of things to check on.

But maybe you feel that twinge too.  Maybe your child did not get into college.  Maybe they procrastinated or did not work hard in high school.  Maybe they have left home to be independent a little too early.  Maybe they will never have a chance to live away from you because of other reasons.
God knows.  He knows how you feel.  And you can feel overwhelmed and wonder why your life or your child's life could not be easier.

And it doesn't have to be college!  I wish with all my heart that I could drop off my seventh grader and trust that he could read directions and would be able to do his homework and assignments and be successful and love school.  But he cannot read!  And he is almost 13!  And though we are working on that with ASU and making progress, it is so painfully slow when I keep seeing 13 next week.  And high school is looming.  And parents lament their children going to high school, and a panic rises up in me; because my own child is no where ready.  And I have stop and pray about it.  I have prayed for this ever since Sam was four, and I knew something was wrong.  And I was put off a lot - by everyone.  So here we are.  And I am his mother.  So no matter who put me off or misdirected me, I am the one (Pete too) who wants him to read and be able to "do school" normally.

So drop off at middle school will be hard.  It's hard to sit in a meeting with people wondering out loud what Sam will be able to do.  Will he drive?  Ever live alone?  I am wondering how they see him!  And that panic rises again.  And I have to bite my lip not to cry and pray even more.

Or maybe your child dropped out of school.  I had one who did - twice.  And I can be ashamed and think I did not do a good enough job when Satan was sneaking around and got by me.  But that child would not have had a mother who prayed more for him.  And God helped him get his diploma.  It took a lot of help from a very select group of people.  But it happened.  And it was all God.  And looking back, school was not easy for him a lot.  And college was not something he wanted.  And so now praying he will be a good, responsible worker in whatever he chooses is what I pray.  If he had moved into a residence hall, they would have sent him home after he moved some walls around and drove his truck around campus too loudly.

God knows what we want and hope for our children.  We just have to pray our children find the way God has for them - the best way.  And not all of those ways look the same.

I appreciate so much when someone compliments one of my boys.  I have had times when I was convinced that people went out of their way to make sure that I knew my boys were not perfect.  And I heard other children praised and getting awards and wondered if I was good enough as a mother.  But it's not about other people and their praise and approval.  It's about God.  So if my child did not get recognized for something, God will let me know (somehow) if they did something responsible or tenderhearted or thoughtful or Christ-like.  And those things are most important to me.

I look at young people who struggle in other families.  Some of them have all of the support they need, and they struggle.  And I pray for them.  And I know their parents wonder what happened too.  So the only thing I can be sure of to tell them is that God knows.  He knows.  I don't have answers but must trust that these young people will be ready to answer God's call when it comes ~ some because of their experiences and some in spite of them.

As school starts tomorrow, Sam and I will pick up our morning prayers on the way to school.  We have been thrilled to hear from a couple of people we have prayed for for so long. They told us in one way or another that they felt those prayers.  We always pray for the missing student from ASU and hope he is found soon.  We count it a privilege to pray.

I did get to take one child to college, Peter.  We got his few things ready, and he moved in one day without us!  It worked out for him that he moved into his dad's old residence hall at a non-busy time.  And just like that, it was done!  So God let me have that one "normal" drop off.  And I did not seem to miss much, because Peter certainly did not need me!  He knew we were here, and that was enough for Peter.

I find myself praying harder and more often for my boys every day.  And I prayed a lot before.  Each has a lot going on.  And it's overwhelming.  And I pray for others too.  I have a heart to pray for young people.  Life is tough, and I pray for God to give them what they need.  And then I try to keep my eyes and ears open for those opportunities to be an encouragement or a light or a voice of truth to them.  I want to be salt and light in a world full of junk cleverly disguised as something else that a lot of times seems good. I pray I don't miss those opportunities while doing something else - like thinking too much of myself or how hard things can be.

I leave with the words to one song I love.  A high school friend posted this on Facebook a year or two ago.  I want my children to know I pray and love them and that God is their constant, not me.  And a favorite verse, because God is not a mean father waiting for us to mess up.  He wants what is best for us.  And He loves our children even more than we do.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11


"When I Leave the Room"  Natalie Grant

Good night
Looks like we made it through the day
The moon sighs
And I know that we're okay

Sleep tight
I love to watch you drift away
I would come with you but on my knees I'll stay

Good night
Five little fingers holding mine
Take flight
Into your dreams and lullabies

There's nothing more that I can do
But just fall more in love with you
And ask the angel armies to stand by
When I leave the room

I'm gonna fail you
I already have
Ten thousand times
I will fall down flat

You'll have a seat in the front row
Of everything I don't know
And all I'm trying to be
You'll see

Good night
There will be storms that we come through
In time
We will slay dragons me and you

I'll always wanna hold you tight
Keep you safe with all my might
So I will leave Jesus next to you
When I leave the room

And you will run ahead
As if you know the way
And I will pray more
Then one should have to pray

There will be words we can't take back
Silences too
And I'll be on my knees
You'll see

One night
When I am old and unsteady
You'll want me to fight
But I'll tell you that I'm ready

When there's nothing left to do
I will still be loving you
Then you'll fold your fingers into mine
And I will let Jesus hold you tight
When I leave the room

Getting Ready for School!

I went to check the school lists today.  I always go the first day they are up...always!  But I have not felt like walking from my car to the school, so I put it off until today!  Sam has Mrs. Huffman.  Will grew up with Gray and has been friends with him since the 2nd grade!  We love her, and we know she will make a huge difference in Sam's day!  Sam has not wanted to talk about school.  Why talk about something you always dread?  But he has said a couple of things in the last two days.  I got most of his shopping done at Target while Peter and Andrew were looking at Lego sets and Nerf guns with Sam.  I had printed the list before we went last week.  I know I have a handful of things to get, but the list is not nearly as long this year!  I ordered a couple of new shirts and almost have his room put back together.  We were going to put bead board on his ceilings but will have to do that in the next month or so.  I did get his room painted, and so it's ready to be finished.  Once his furniture is all in and arranged and drawers are organized, he will be ready to get ready each day!

I also ordered Andrew more pj's, since I could not find many options here!  They should arrive soon, and we will be about ready with what he needs for his hospital stay.  I ordered the Robert Whitlow movies that I have not watched in years.  Hopefully, he will feel like studying; but we are ready for rest time too - books on the Kindle for me and easy to watch DVD's for him.

We ordered Sam's birthday present and Will's new Carhartt pants.  Since I have not felt like doing much more than I need to do, ordering has been a lifesaver for these upcoming birthdays and appointments.

Andrew gave Sam one of his ASU backpacks, so we did not have to get a new backpack this year either.  His last one had a zipper problem.  We have to be able to get to his emergency snacks and meds, so that would not do!  I think when Sam carries Andrew's old backpack, he seems much taller.

Andrew starts classes Tuesday after Sam starts Monday. Peter starts his internship soon and should be ready to go!  My car goes into the shop for its new bumper on the first day of school, so Andrew will loan his truck to me.  That thing needs a good bath and vacuuming, and I hope to be myself by then and to get all of that done for him!

We are having a birthday party at Boulder Look after Pete preaches at Providence on Sunday, August 27.  We will be having special prayer before Andrew goes into the hospital on Wednesday, August 30th.  We are praying for a safe stay and for a quick stay.  That means Andrew needs to have seizures that they can track and get information from as quickly and safely as he can.  I dread it, but I am hopeful it's something that will have a good outcome.

Thank you for praying for us.  For our family.  We will be at Three Forks Baptist Church this coming Sunday, August 20, filling in.  We are thankful God has given Pete opportunities to preach the Gospel right now.  As we deal with these earthly trials, we want to make sure we are keeping our eyes up on things eternal.  We want to keep our focus on Jesus and what He wants us to do.  Please pray we do this and bring Him glory in all that we say and do, no matter what.

Thanks!

Andrew's MRI

Andrew's MRI went well last night at Duke.  He was back there about 45 minutes total, and we got back to the hotel a little after 11:00.  Peter and Sam had waited up for us, and we all got a good night's sleep before coming home this morning.

And...we just read the MRI results online and got a note from the doctor already through their portal!  I must admit that I have had trouble signing up for some of these, but the Duke one was very easy.  We have already sent a message to the doctor about Andrew's meds before our EMU (epilepsy monitoring unit) stay and got a reply right back.

The MRI shows the same scar tissue (for lack of a better medical term).  It's in the same spot and appears to be unchanged from 2004 ~ good news.  Everything else looks normal.  That's a huge praise.  I sometimes worry that issues are chalked up to previous things, and that something new would easily just march right by me.  That is where I have to pray and pray and pray that God will tell me when to check something out.  I cannot tell you the times He has nudged me when I needed that nudge.

If this scar tissue is determined to be the cause of his seizures, they can look at surgery to take care of it, as long as it does not go too deep.  I am so scared about the possibility of surgery on his brain but hopeful that the trouble spot could be taken away.  It's been a huge trouble spot his whole life, and he would love to be rid of it.

We ate a good breakfast, and then Peter got a speeding ticket on the way home ~ Wilkes County.  I am sure it is playing over in his head, my words, "Drive safely but never speed in Wilkes County; or you'll get a ticket!"  Now he believes me.  He was very respectful to the trooper.  Oh well.  I still appreciate that Peter took another day off to drive us.

I just finished my second antibiotic and was hoping the steroid shot I got Tuesday would kick in.  I am so dizzy and have pretty bad sinus-like headaches.  I sip on Ginger Ale all day for nausea.  I have used every home remedy for sinuses that my grandfather did and one I learned from a veterinarian!  My nose refuses to run, and I am convinced my sinuses are locked up.  I keep praying this goes away soon.  Six weeks is a long time, and I keep reminding God that my shift in the EMU is not going to be easy.  I know He knows, but frustration is creeping in.  I had a hard time walking to the car last night in the dark.  During this, I really feel like God is reminding me how it feels to not be able to do what you need to do - literally.  I had this once before and wondered how long I could go and keep doing what I needed to do.  So I am trying to be patient and hopeful while getting the bare minimum done each day.  And some days I have had to ask God to take over and show me what to do.  And He has.  I just cannot wait to feel like myself again and will never take it for granted.

That said, I am going to bed as soon as I get Sam squared away for the night.  He had such a fun time swimming a little bit again!  Peter found his shoes on the way yesterday for his internship (Thanks, Mimi and Grandad, for the early birthday gift!).  Andrew and I are still looking for pj shirts that button up the front and think some were located in Bristol!  We appreciate all of the help getting our stuff together.  I still need some new author ideas!  Robert Whitlow's new book is not out until September 12 ~ oh, so close!  I wish he knew I was his biggest fan and would send me an early copy!

Everyone else seems fine.  The older boys are working, and Peter starts his internship and final semester soon!  Pete and I attended a celebration of life at the home of a dear couple who lived in Blowing Rock.  It was a wonderful service with many opportunities for people to hear about what gave/gives this family hope.  Remembering that sharing eternal things and not getting bogged down here puts my life in a better perspective.  If you don't know Jesus, you cannot have this hope.  And it's not a statement I put lightly.  I am not His best messenger, but I hope sometimes He can work through even me.

I have gotten cards and texts and messages and face to face visits lately from people I know God put in my path.  And I am so very thankful that when I am so worn down and worn out, that He puts them right in front of my nose where I will not miss them.  And I want to be looking for His provision and the ways He takes care of me (and mine!).  I want to be expecting those things, not wishing for them but not really believing.

Thanks for praying for us.  Please pray as we get ready for this next step.  Andrew seems very fine with it all, and I am dreading it (and trying not to show it).  I am praying for peace for all of us before we walk in those hospital doors.

Happy Friday!  I will leave these verses here that I needed extra today.  I am so thankful I don't have to lean on my own understanding.

"Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths." Prov. 3:5&6

"Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable." Isaiah 40:28