Sam's Neuro Appointment

Sam went back to the neurologist today.  They called and asked us to come in earlier than our January appointment.  His MRI on December 1st was "slightly abnormal" but not an emergency.

I knew his MRI showed something like a stroke early on.  I had read the report our pediatrician requested.  But I did not know what that meant, so we got a couple of questions together for the neurologist.

I really like this doctor.  She is kind and easygoing and very smart and easy to understand.  She knows what my questions are when I ask them.

She told me that Sam's affected area is different than Andrew's - I took some of his old records.  But she said that the area affected was in a learning and processing region.  It would also affect focus.

In a nutshell, Sam is either having trouble reading because of a "slowing" in that area.  Or he could be having silent seizures which are different than absence seizures but the same in that you cannot tell someone is having one.

Our next step is to have a 24 or 48 hour EEG to see any signs of silent seizures.  Or wait and see.  If he is having the seizures, his learning will not improve unless treated with seizure meds.  If he is not having them, we would just keep working with him until his brain compensates and overcomes the deficiency.

I told her that I would talk to Pete and call back.  She was totally fine with that.  But I asked her if he would do any better if he was having silent seizures and we did not treat them.  Her answer was no, because it would be like someone with bad asthma trying to run a marathon with no asthma treatment.

My other question, of course, was if Sam is more prone to seizures because of what shows on the MRI.  Unfortunately, the answer to that is yes.  Whether he is having seizures now or not does not really affect that.  And treating silent seizures may not affect stopping other kinds of seizures that may occur in the future.  There are lots of studies on that.

So, the day was full of information.  I am going to talk to our pediatricians before we go ahead with the EEG, but it seems that we need to do that so we will know.

Thanks for praying for Sam.  This is all information we need to know, and we are thankful it showed up in his tests.  All of the labs they did were normal.  That was good news.

Happy New Year!  Thanks again to all of you who pray for our family.  We have literally been carried the last several weeks with other things going on.  God provides the people we need when we need them - the ones we see often and the ones we have not seen or heard from in years.  I know He is with us and will help us with this new/old stuff with Sam.

Sam and I went to Marshalls and bought him a new toy.  He picked out a small truck set from the clearance rack, but the more we wandered around, the more I determined to treat him to something "big" to him.  He was so excited when I pulled out unexpected consignment money a friend gave me the other week and let him choose a big Bruder truck set.  He only wanted one big toy for Christmas, so he really was excited to get something else big.  And somehow, it made me feel better.  He is such a good boy and works really hard.  He has noticed that he has extra help at school and told me the other day that some people with glasses are really smart.  I told him that he is too - that his problem is with reading, not with being smart.  So he is growing up, and I hope he can somehow understand that God will help him through whatever is ahead, sooner than later.

Thanks again.  Be safe and warm!

"I Am Not Alone"  Kari Jobe (my present constant song)

When I walk through deep waters
I know that You will be with me
When I'm standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear

I am not alone
I am not alone
You will go before me
You will never leave me

In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
And I will not fear

You amaze me
Redeem me
You call me as Your own

You're my strength
You're my defender
You're my refuge in the storm
Through these trials
You've always been faithful
You bring healing to my soul

Happy Birthday ~ Katelyn Elizabeth Ball

Once again I am reposting what I have written in the past.  It's been a tough few weeks for our family.  It's been a tough few years for our bigger family.  God is here.  We know that.  As we go through the valleys that come with life, we know He walks along with us.  He is never more real than when we are at our lowest and can only turn to Him.  If only we were that close to Him when things were going well.  

I stopped yesterday to remember Katelyn.  I felt that cinder block wall.  I remember reaching to touch her tiny self with my finger - the only time I would get to do that.  I let myself feel the hurt that my arms felt.  I thanked God for our other children.  I prayed for those other children with a fierceness.

I thank God that He knows all.  He knows how I feel.  He knows what I need.  He is always there.  He is always here.

Happy Birthday to my first precious niece ~ Katelyn Elizabeth Ball.  I know where she is, and I will see her again.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I cannot believe tomorrow is Katelyn's 22nd birthday. She has celebrated all of her birthdays in Heaven ~ if there is a need to celebrate when in Heaven on just certain days! I got a text this morning from a dear friend/sister. She asked something, and I knew exactly what she was asking about ~ Katelyn. We all come back to this place this time of year. It's sad, but it's so much more than that. The first years were hard because Katelyn was the first baby in the family and for most of our friends. We did not yet know about all of the blessings that would come. So we felt the loss and felt it very acutely.  We still feel the loss, but we can see how God has worked; and that gives us hope and peace.

 November 20th will always be a day of reflection for me. I can still feel that cinder block wall. I still remember having my brother right there with me ~ knowing exactly how I was feeling and sharing that time of sorrow and concern. I can see my mom sitting in the waiting room. I can see my aunt talking to my uncle. The memories are so sharp. I remember Little Caesars in Winston and the chair that a nurse brought outside the NICU for me to sit on while Whitney visited in the nursery. I remember driving my grandfather back to the road to go home in a small rental car. So many memories half my lifetime ago ~ that seem like yesterday.

I know He lives. And I know we will see her and others we have lost. What a blessing and what hope we have. If you don't have that, please ask someone about it now. The gift of eternal life is free and just needs to be accepted.


This is last year's post ~~~~~

I wrote this original post two years ago. I just read it again...and cried. It seems like it could not be 21 years ago, and then it seems like a lifetime ago. The first weeks were the hardest. Then the first months. God was with us. He is still with us even now - He never left. Never will.

I know one of God's tiniest angels
She slipped into our lives one cold night
Not meant to stay for long
This precious little bundle
She taught us love in her short time on earth
And when it was time to go
She slipped out of our lives
But not out of our hearts
Where she will stay
And we will see her again...in Heaven
(a revision of the poem I wrote a year after she died)

Every year is one year closer...

2011 Post This is actually last year's post. I just read it and cried. But it says what I would want to say again. I am adding some song lyrics to the end. So this is a long one.

Happy Birthday this weekend to my precious little tiny Katelyn Elizabeth Ball. Every day is one day closer to seeing her again (and those great grandparents mentioned in this post!). Thinking of the family and friends and praying that her life will still have a strong impact. ~~~~~~~~

I can remember it like it was just last week. I arrived at Forsyth Hospital in Winston where my sister was in labor with her first baby. She had found out about a month before that the baby was not growing and developing. We knew some of what could be, but we did not know much. I found her watching Little House on the Prairie while nurses hovered nearby and lots of doctors were readying to attend the birth. Because Katelyn was my sister's first baby, they really wanted to do everything they could for her and my sister. My dad would check on Whitney periodically, but he would turn a greenish color and have to leave. My aunt was begging my uncle for a cigarette, but he kept reminding her calmly that she had stopped smoking. I remember arriving, checking on Whitney and Dwayne, going to the Hanes Mall to eat (and not even being tempted to shop!) while we waited...and waited.

Then I fast forward to sitting in the hall straight up against a cinder block wall. Katelyn was there, and Whitney was fine. The doctors did not think that tiny baby would make it through the night. One of her pediatricians had mercy on Russell and me and invited us to say hi to Katelyn before they took her to Baptist just a little bit away. She was as long as a newborn because she was term, but she weighed less than three pounds. I remember yellow. Her hair or her skin. And I remember loving her with everything I had. And I remember how my arms ached so badly to hold her. Now I can grab one of the other children to hold when I feel that ache, but then there was no baby to hold. And we could not hold her. I am sure Russell and I prayed for her and over her. And that was one of the only times I was within an arm's length in her whole five weeks.

In the NICU, there are very strict rules with very good reason. Still, I drove to Stuart, VA, every weekend to spend time with Whitney and go with her to the hospital even though it meant sitting on the outside. I got a couple of glimpses, and Dwayne took some pictures. No digital cameras back then! And there is a video. I ached to hold this baby, see her, and get to know her. And somehow through the wall, I was able to do just that - get to know her through pieces of information and pictures. She was supposed to have only part of a kidney. She had more than they thought. She scooted in her tiny bassinet. She scrunched her face and tried to hide from Santa Claus visiting the sick babies. In her little life, she did have personality and fight and determination. And oh was she loved.

My grandparents arrived one day to see her. My grandmother announced to my grandfather that she was going to see the baby - whether he took her or not. They totaled their very large (enormous really) Cadillac on the way to see her - in Cana, VA. It was a multi-car accident where one car stopped suddenly and several cars bumped into the back of each other. My grandparents had to rent a car half the size of theirs and continue on the trip. They got to go in and see her - because they were great grandparents and not just aunts. My grandmother came out and said of my sister, "Well, she has herself a real live baby doll." That meant so much to my sister.

Whitney and I would stop at Little Caesar's in Winston to treat ourselves to Crazy Bread before returning to their home way out in the country. Dwayne worked the night shift a lot, so Whitney appreciated the time I could come. While I was there one weekend with another friend, one of their two dogs came back shot. The other never returned. We searched all over the area where they lived and realized that no one cared if they shot someone else's dog - especially someone with a dying baby. It was a bleak, sad time. I was in charge of cleaning the bathroom when I was there. I put myself in that job. I cleaned that tub so much it's a wonder the finish did not come off. It's hard to know what to do with the energy and feelings and aches sometimes.  

Dwayne and Whitney came to Bristol on Christmas Eve in 1991, intending to spend a little time with family and return to the hospital and Katelyn on Christmas Day. I remember the phone ringing in the wee hours of the morning. It was the hospital - no cell phones back then. They cared enough to know where to find them. Dwayne and Whitney rushed to Baptist. By the time we got there a little later, Katelyn was gone. I still remember every Christmas how that felt. Again, I can grab a child now and hold him or her; and for that, I am so thankful.

I try to go and visit her grave on Christmas Eve so I can tell her I love her - even though I know she is not there. It's just a quiet place for reflection and to thank God for what He has given our family and blessed us with.

That time was a hard time in my life too. I took time off from my life the next few months and returned to school to start on a second degree. Thankfully, God worked out my own situation; and I returned to North Carolina and my own life that had seemed suspended for a few months. I remember people being so kind and helpful and thoughtful and supportive. And I still remember times of being so hurt by something someone said that I did not feel I could stand it. Sometimes I remember to keep my mouth closed. I would not want to cause that same pain and confusion for someone else. I appreciate those who quietly prayed for all of us and were there when we needed them - not just pretending to care but allowing God to use them to minister to and sustain our family.

I know one of God's tiniest angels. She slipped into our lives one cold night not meant to stay for long. And when it was time to go, she slipped out again. But she left us with something so hard to explain. In her short little life, she made such a huge impact. I cannot wait to see her again and hold her. I don't know what she will look like in Heaven, and I don't have to know. I just know I will see her, and I will know who she is!  

Happy 19th Birthday to Katelyn Elizabeth Ball. Thank you for affecting my life in such a wonderful and loving way - even though it is not empty of hurt and pain. I love you so much, and I am so happy to know you are with the One Who loves us the most. ~~~~~ Even though it was indeed scary, her parents loved her without reservation. A lot of us did. And though it has been hard without her here, we have that HOPE that we will see her again. She is worth every falling tear ~ just as they all are!

All of Me (Matt Hammitt)

Afraid to love
Something that could break
Could I move on
If you were torn away
 And I'm so close
To what I can't control
I can't give you half my heart
And pray He makes you whole

You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start

 I won't let sadness
Steal you from my arms
I won't let pain
Keep you from my heart
I dread the fear
Of all that I could lose
For every moment
I'll share with you

You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start

And Heaven brought you to this moment
It's too wonderful to speak
You're worth all of me
You're worth all of me
So let me recklessly love you
Even if I bleed
You're worth all of me
You're worth all of me

You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start

You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start
It's where I'll start

A recent email I sent...

On September 20th, we "celebrated" five years with diabetes in our family.  On September 22nd, I quietly thanked God for sparing my other child during a very scary night five years ago but also shared it on my blog, so He could be praised for helping us throught that awful night.  Sam and I went to the Incredible Toy Company (instead of the usual Walmart) to pick out a gift from his mom and dad for being such a good patient and trying so hard to help take care of himself.  We had fun looking, and he declared it his new favorite store.  Andrew never wants anything anymore except maybe an occasional book off of Amazon.  It was a day/week to look back and be so thankful, so it was more thankfulness than sadness this year.  That first few weeks with diabetes, I just wanted to go back to the week before and not know about diabetes.  It was horrible.  But amazing things are in the works for diabetics - including contacts and nasal sprays.  We plan to walk in the JDRF Walk in Asheville on Sunday.  Last year, we did not go at the last minute as we did not want to miss Pete preaching!

Sam and I went to Sound to Sea last week with the fourth grade.  Our first night was rough - up every 2-3 hours checking high blood sugars.  He had felt so terrible when we first got there that he asked to come back home!  The next night was much better, and we both needed the rest for the trip home.  He had not felt well and rode with me.  We went on without the buses after lunch, and we drove in torrential rains almost the whole day.  It was hard to see, and we took a break in Durham where a lot of people were driving with their flashers on.  We ran through the rain into another of his favorite stores (and mine too!) and then got back to getting home.  He was so happy to see Lucy (his puppy), and she was doing back flips in the kitchen so happy to see Sam!  I am thankful to have had that special trip with him.

Andrew is running but has not been able to run a race with the team this fall.  It's been so hard to go this fall without watching my runners!  We hope he can run a race on the home course in a couple of weeks.  His knee feels much better, but he is still not where he should be.  But he just keeps plugging away.  He has had some encouraging things come his way, and we are thankful for those.  He continues to work so hard.  He has been a good listening ear for me and gives pretty sound advice when I am frustrated or disappointed in something or someone.

We just celebrated three birthdays at our house, and they were pretty big ones.  It's Sam's first year in double digits and Peter's last as a teenager!  We enjoy having Peter around a little more this year, but he is always busy at school and work and at friends' houses.  Will has gone from climbing trees to light poles - temporarily I hope.  He generates a lot of comments sometimes, so I just pray he is safe and responsible in all that he does.  When people feel so free to share their opinions (I am writing this to others who have less than perfect children!), it's comforting when God allows us to see our children's hearts and things that are important that others may not see.  It does not mean that good is not there just because others don't see it.  I appreciate his heart and how he helps others.  It's like the time I had to get down on the floor to see what one of my toddlers could see from his viewpoint to understand him better.  I will always be thankful to James Dobson for his advice, because it made me appreciate that little boy so much - who seemed so difficult at the time.  I am thankful to my friends who walk with me through those days that are difficult without adding to the burden but help carry it (or convince me to hand it over!).  And sometimes I hide from those who do add!  I appreciate the ones who can make me laugh on tough days or see what is good in a situation I think is far from good.  It's not always behavior.  We still deal with a lot of learning difficulties with Sam, and that alone can be discouraging.  Pile that on top of the medical stuff, and sometimes I am one very discouraged, overwhelmed, and tired mom.  But God does not want me to feel defeat.  He overcame every single thing for me.  He keeps showing me that over and over.  I have felt like a lot had been taken away this year in terms of support, but He keeps on supplying what I need.  It's happened before.  And sometimes in the loneliest times, He is so much more clearly right beside me.  I would not have seen Him if I had been in my comfort zone surrounded by my support system.  And then some of that support returns just when you think it's gone - but it had been there all along - just not front and center.

I am reading a book and am not too far into it.  But the thing that has jumped out is to pray.  Pray.  Pray.  Pray.  And I have started praying for my boys more fervently than ever.  Sam and I like to pray for everyone on our way to school, but we don't do it every single day.  And we need to do just that.  God knows it all, and He is the One who can guide me as a mom and them as their own persons.  The book is not on prayer - it's Karen Kingsbury's new fiction book.  But that is what stood out so clearly to me.

Thanks again to all of you who pray for us.  Pete goes to Israel again in October into November.  I keep a close eye on headlines some days.  I know that is not a peaceful place, and it always makes me feel nervous that he is so far away.  But he has gone enough that I know God takes care of him and of us when we are that far apart.  I know He will this time too.  He is doing a Bible study in the Yosef Room in Owens Field House on Monday nights at 8 (with free pizza!).  It's open to all students if you know anyone to send that way!

Thanks again!  Happy Fall!

Sam's Five Year Anniversary

Tomorrow is our 5 year anniversary with Type 1 diabetes in our family.  It seems like yesterday but then also seems so long ago.  I guess that is just how it is with something that takes up so much of your time and effort.

We look back and find many many reasons to be thankful.  We see how different people were put in the right places at the right times to help us – even when most of the time they did not even know!

We appreciate the helpers and encouragers.  We love our helpers (Andrew, Peter, and Will) at home – and Laura.  We love and appreciate our helpers at school – who have taken on a role simply to help our little person.  We appreciate those who have sent Sam things – treats AND supplies.  We appreciate our doctors and nurses who help us along the way.  We appreciate all of the prayers that have been prayed for us and for Sam.

I remember clearly looking up at the ceiling and silently pleading with God not to let Sam have diabetes – right before they had his diagnosis.  That was one of two guesses the doctor had in the ER.  I did not know much about diabetes, but I knew I did not want it in our house.  I even told God that we already deal with a lot.  Remember?  Those seizures I stood in this very same ER and said I could  not handle?  Remember?  Please don’t give us something else.  I can’t do it.

But He knew.  He knew before Sam was even born that this illness would be a part of his life.  It’s not the worst illness.  But it’s wearing.  It’s all of the time every day and every night.  I know you may not understand.  And that’s okay.  I know a lot of you DO totally understand, and we have the reassurance that God loves us.  Like other bad things, we did not cause this; but we can allow Him to work through it.  What other choice is there?  And don’t think I don’t cry some days and some nights – in the middle of the night.  Because I do get tired and frustrated and scared.  But I know God is still with us.  I reach out to Him when the house is quiet and still and the night has not been good.  And He is there – waiting for me.  Because He loves me.  He loves my children.  He loves you!

You know, September 20^th was hard.  September 22^nd was even harder – the night Andrew was taken to the ER in the ambulance with a seizure that would not stop.  Pete was not here to help me, because he was already at the hospital with Sam.  We could not bring Sam home until he was stable, and before we had our training on how to take care of him.  That was hard to take, but it was also a time that I felt so helpless that I had to cry out to Him.  I could do nothing.  It was an awful night.  And He worked it all out.  I cried out to Him – part of the time at the top of my lungs.  And He answered me and assured me and reassured me.  And so, as awful as that night was, I can look back and see where He had us in His hands.  And where else would we want to be?

Sam and I go to Sound to Sea next week with his whole grade.  He is still shy and timid in a lot of situations, but I know Andrew was and still had a great time on this trip.  His mommy and the nurse will be there to keep an eye on him and check his blood sugars during the day and at night.  We will discreetly give him insulin when he is high and snacks or candy when he is low.  We will count his carbs and monitor what he eats.  We will look to see if he looks gray or tired.  But I also know we will watch him grow and come out of his shell a little bit more on this wonderful adventure. 

I don’t think I am special.  I know we all are.  God knows us by name.  I don’t need to worry about if anyone else in the whole world knows my name when I know He does.  He knows my children’s names.  He knows every single person by name, and He knows our hearts.  As Francesca Battistelli sings, “Make no mistake, He knows my name.”  I love that song, because He knows me.  And He still loves  me.

The last five years have been particularly hard.  And I feel God is telling me to turn this burden over to Him even more than I think I have.  I think it’s about time to not let it (the illness) run our lives so much.  Sure, we have to do what we have to do.  But I need to draw nearer to Him and do what we are supposed to do while letting go of fear and frustration – and even sometimes wishing we did not have it.

I love Nichole Nordeman’s song where she says if we did not know midnight, we would not see the sunrise for all it is.  And I have not had the worst midnights, but I have had some pretty bad ones.  It’s all part of our story.  And the point of the story is to point others to Him.  My whole testimony is that I cannot do anything by myself.  God helps me (us) through.  And at the end of my time here, He is the only One who could provide a way for eternal life for me.

So I sit here with tears knowing that I have a little boy who will battle this disease, but he is willing and cooperative.  And he knows that one day he will not have to battle it anymore (or wear glasses), because he has asked Jesus into his heart and is not sure what Heaven will be like but believes it will be better than we can imagine on this earth; and he has a way to be there.  It may seem very surface, but I think he knows this and believes it deep down. 

We still appreciate all of your prayers and encouragement.  God uses you in mighty ways.  The last few months have been hard for different reasons, and God has not let me down.  He knows me and knows what I need.  Even when I don’t.

Thanks again!  Happy Fall!

“Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father, but by me."    John 14:6

^“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:6,7

“But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."  II Corinthians 12:9

“I can do all things through Christ which strengtheneth me.”  Philippians 4:13

Busy Days!

Life has been too busy lately - for sure.  School started, and we are getting back on schedule pretty easily.  Everyone seems to be settling in well.

I have been catching myself feeling overwhelmed again, but I am trying to keep on eye on it instead of it getting me.  I have set some good goals - like taking care of what bothers me the most - and keep working towards those.

On the Thursday of the week that school started, I was able to drive to Asheville to see Third Day and Steven Curtis Chapman.  They were in concert on the lawn at the Biltmore House.  It was a privilege to be there - not because of the Vanderbilts or the singers.  It was a privilege to look at one of God's prettiest sunsets in the prettiest scene.  I felt like I did when I was there several years ago - seven years ago.  Life has changed a lot since then, but I remember needing a good pick me up.  And I got it that night seven years ago.  SCC shared a lot about his family's loss (their youngest daughter was killed in an accident in their driveway).  It was only a few months later.  When he sang - totally from his heart that loves God - it was like being at revival.  And I remember feeling like water had washed over my soul.  I knew I needed that again.  And it happened again during the concert.  Listening to Third Day was like being at revival.  And listening to SCC was like being at church on Sunday night with not many in attendance - very down to earth and personal.  And that is what Jesus is all about - very down to earth and personal.  And while I know He is always with me, I need times that I am reassured and reminded.  And I was.

Church has been going well.  It's been difficult in many ways.  It's been a blessing in so many ways.  Sometimes I catch myself avoiding people and things, thinking I will cry from the lump that wells up.  But that is settling down.  There are so many great people at Middle Fork.  It's hard to miss people I have been with for almost 20 years and not see them.  It's hard to be the encourager when I feel discouraged sometimes.  But I truly believe that God calls me to be obedient; and, when I am, He takes care of the rest.  So I am trying to give it over and not take it back.  Sometimes I feel hurt or lonely or left out.  Looking back, sometimes those feelings (if they don't get out of hand!) can help nudge us to the next place we are supposed to be - physically or emotionally.

We just celebrated two boys' birthdays and have one more coming up.  I look back on their lives and what they have meant in mine, and I feel so blessed.  I remember tough times and sweet times.  I found a picture of the boys with me when Will was a baby.  I loved dressing them in cute things and was pretty particular about what they wore.  It was not expensive - I had consignment and TJ Maxx bargains.  But I loved dressing them up and trying to fit their sweet little personalities.  They all looked different and were/are very different.  It's so sweet to look back and see how they were - now that they are all getting so old!

We have just been through another little concern with one of the boys.  It seems to be resolving itself, but it made me dread blood tests and more doctors.  But we may get to skip that last part, and I am thankful for that.  So thankful and hopeful.

I read where so many "children" went to college this year.  Some were close and some were very far away.  And I was again thankful that Andrew's own situation worked out the way it did.  I wish he could go away.  I wish he was able to do that.  I hope he will be able to do that someday soon.  I tried to not think about what my own child could not do but instead be thankful of what he can do and is doing.

We have a triple birthday party tomorrow, so I have another room to clean and lots of gifts to wrap.  Thanks for praying for our family!

Andrew Update

Sorry to have so many emails so close together!  But we appreciate you who pray for our boys and check on them!
Andrew got a lot worse before he got any better.  Dr. Adams talked with him and looked at his knee and told him to try some things.  He is actually able to run some - after not being able to walk one night last week.  It was so bad that Sam and I were running things up and down the stairs to Andrew in his room!  He is going to the trainer still and doing everything else he can to try to run.  He just did another two week infusion, and it only lasted less than two hours.  He only adds one site but doubles the medicine, so we think that is great - and no side effects  yet except the meds pooling under his skin.  And (bless his heart), he easily figured out (just with an email from his patient advocate) how to change the syringe over using the same tubing (so his mother did not have to do that!).
Sam ran in the 100's all day yesterday and this morning with an exception of a 43 in Sunday School.  After such a crazy two weeks, it is good to see those numbers and be able to take a breath and know we are on the right track, for now anyway.  And we will take it while we can get it.  We talked to a man at church yesterday who is in his 50's and has had Type 1 since he was two.  It's hard to hear how hard (and scary) it can be, but it was good to see how good that man looks - even after a horrible scare himself last week.  We just keep trying and being thankful for good days and nights.  And we will work harder when the numbers are not good.  We especially appreciate all of the help we get with Sam at school and the supplies that came from a friend the other week (along with "fun" stuff to balance out the test strips!).
Pete had a great trip to Alaska but is so happy to be home - as we are!  One of his amazing stories is about a group of people who work on the ship who came to a midnight Bible study/service.  Eleven gave their hearts to Jesus!  He talked about the beauty of Alaska, but that was the story that gave me chills (and him too)!  We appreciate all of the offers of help while he was gone.  We were able to get everything (extra) done.  The boys helped a ton (whether they always wanted to or not).  But it helps having people on call.
The boys all start school tomorrow!  Sam is fortunate (we are too!) to have Andrew and Peter's fourth grade teacher.  We love her, and Sam was born while Peter was in her class; so she has known him his whole life and has always made a point to talk to him at school.  So he already feels like he knows her and that she loves him.  She has already sent an email to us (parents) telling us how excited she is about the new year.  We feel so blessed, and we are ready for a great year.  So as I send off a fourth grader, a SENIOR, and two college students, I will be praying for them as they start a new year.  Lots of prayers will be going up for Hardin Park, Watauga High School, and Appalachian State too. 
Thanks again for all you do for our family!  I will keep updating our blog - www.sixvandenbergs.blogspot.com so I don't keep cluttering up inboxes!  Thanks!

"Those who go to God Most High for safety will be protected by the Almighty."  Psalm 91:1

Andrew's Doc Appt

Andrew found out Tuesday that he probably has some form of tendonitis.  I know it's frustrating, but I told him at least he had no tears!  His MRI was clear but did show something that could be something inflamed like tendonitis.  He is still running in the pool and biking.  He has put in the work and the miles this summer, so I pray all of his hard work will show this fall.  Otherwise, he seems to feel good.  He started his infusions twice a month instead of four times, so that worked out well.  He was finished with four sites not too long after three sites with half the medicine takes.  I will begin the process of getting his authorization done soon.  They told me last year that I did not need to do anything (my insurance company).  But when left up to them, it did not work out so well.  I read about so many people who have problems getting what they need and should get, and I feel even more thankful for the help God has provided to us in dealing with red tape.  I have been frustrated and felt pretty helpless sometimes at their hands, and so I don't take that help for granted!

Sam has been swinging from over 600 to the 30's since last night.  I think I may have him checked out tomorrow.  He was fine until bedtime last night but then was over 300.  So I gave him some insulin on his sliding scale.  I was more cautious since it was bedtime.  But when I checked him 30 minutes later, he was over 400!  So I gave him a tiny bit more.  Thirty minutes later, he was almost 500!  It was very late by then, and I was really confused.  And I was afraid all of the insulin would kick in at once and drop him too low.  I checked his pen and meter and found nothing wrong.  He finally started coming back down and woke up in the 190's.  He popped up over 300 for Andrew and then over 600!  Andrew was doing what he should.  I came on home, but Andrew had called me on my way to say he was 170.  Finally!  A good (much better) number.  When I got home a little later, he looked gray.  I thought he was high again but was 36!  We just hit a 34 a few minutes ago, so he is eating some snacks with carbs and protein.  In between those, he was either good or over 300.  Sometimes diabetes can be such a pain.  At least he is a sweet little patient.  And he has gotten good at slurping down gogurt in the middle of the night when he is low!  Sam's new puppy was there today when I was checking him and finding those bad numbers.  I told her to pay attention so she could help!  (I know this is long, but my diabetes friends know exactly what I mean.)

All of my boys start school on the same day this year!  Since our county starts later, they all start on the same day which will be good, I hope!  (Traffic!)  We have been getting our stuff together since it is just right around the corner (19th), and the dining room looks like the school section at Walmart.  Sam and I make a trip to Charlotte next week, so we can get his endo appointment out of the way before school starts.  I wish it were tomorrow!  That would be helpful.  I would just hand Dr. Parker his meter and log and ask him to tell me what to do.  He is good about that.

Speaking of doctors.  I have shared my friend Mike's story with a lot of you.  He had leukemia which went to the worst leukemia (ALL), since he had hesitated and turned down the bone marrow transplant.  He had the best doctor near Nashville who literally saved his life.  He got Mike back to the point where he could even have the transplant.  All of that is another story.  It's all a miracle.  It would make you cry and praise God for His work in Mike's life - which has encouraged and affected many over the last 14 (?) years.  Anyway, his doctor who was still helping tons of patients, was killed by a drunk driver yesterday near Nashville.  Please pray for his family and his patients and friends.  And please remember Mike.  When I get tired, I look at how tired Mike got and how he just kept going.  And I can see how God has blessed him in so many ways and used him and his story to help others.  I am so thankful for him, and I am so sorry for the loss of this special doctor who has helped so many.            

Thanks for praying for us.
     

 

Andrew's Knee

Please pray for Andrew this week.  His knee is killing him, and he has an MRI scheduled for Friday.  The PA we saw Friday told him he could keep doing what he could, so he is running in the pool and riding the bike at home.  He is starting to feel frustrated with it all.  I told the PA that I did not get Peter an MRI until he ran on a stress fracture for probably over a year, so he went ahead and set it up instead of waiting a few weeks.  I just did not feel like we should wait, since the summer is flying by and cross country will soon be upon us.  I also checked with Dr. Adams who thought that was a reasonable plan (and who checked on other joints and fevers which are all negative, thank goodness!).

Andrew is also finally over getting his wisdom teeth out!  He was so tired of a mushy and liquid diet!  We are glad to have that behind us now.  I don't think he will willingly eat pudding, ice cream, or applesauce anytime soon!

Sam is doing well.  He just finished his third grade reading camp - which was required of most children who were not reading on grade level at the end of third grade.  It was most of six weeks beginning Monday after school was out.  He rode the bus and loved that.  He has his birthday puppy a little early and loves Lucy.  She is a sweet little dog and has kept him quite busy for the last two weeks!  His blood sugars have been a little high the past few days after being pretty "normal" for a few days following some bad lows on several days/nights.  I am just happy we are not seeing 49's at bedtime that refuse to come up for hours.  I am sure a lot of it is because he is growing so much.  Dr. Parker will remind me of that when I take Sam in a couple of weeks.  He keeps warning me about age 10.  I think I have come to dread it a little bit!  It's hard enough for my baby to turn 10, so I don't need to add more diabetes stress and confusion to that age.  We will just keep checking him, praying a lot, and doing our best.

On another good note, I was trying to pay the boys' tuition and fees for fall last night and found that Andrew has an extra scholarship!  It's not big, but it helps a lot!  Since I worked in Admissions for over 20 years, and a lot of that was with scholarships, I recognized the name on the scholarship.  It's for students in his major with a certain gpa.  It is just one of those things that I know God threw in there, knowing I would see it and recognize it.  I know Deanne, Joe, Paul, Paula, Harry, Patrick, Cyn D., Treva, etc. would recognize it too and see how all of that comes together!  They would appreciate how much I appreciate it!  We waived their health insurance and now are waiting for that to process before we pay their bills (just a heads up to other Appalachian parents to get that waiver done before you pay!).

Peter is working hard every day on campus.  Will is working hard most days - somewhere.  He is literally everywhere, but his next big project (I hope!) is our new garage door for the basement.  I cannot believe school is about to start in just a few short weeks.  The summer is almost gone!  It's weird, but summer is my least favorite season; so it's okay.  I am just not ready for school yet.  My girls' (mommies) weekend is coming up, and we used to buy all of those little school clothes and church clothes when we went.  Not anymore!
My boys don't like having a ton of extra clothes, and they even buy a lot of their own now.  So it will be more fun and not long lists of things I cannot find in Boone.

Pete leaves next week for Alaska.  He is going on a cruise for work.  I pray it's a restful time for him - as he has been way too busy for many months now.  He is glad to see some "extra" jobs come to an end at the end of the summer, and I am too.  I appreciate that he takes on extra things, but sometimes it adds up to too much.  Fortunately, he is realizing that for himself without me telling him!  But he has also provided a way to save for something special for Sam, and I appreciate that so much too.   Since taking a church, he has not had a minute to take a break; so I am praying that he just has a wonderful time in that majestic place.  Even though we will miss him here!

This is a lot longer than I intended, but thanks for praying.  Thanks for asking about the boys and encouraging us.  We appreciate it all.  And though sometimes I sound tired and negative, I do know where to look for my strength.  And He is faithful to give it to me and provide all that I need.  And I appreciate all of the reminders that God gives - sometimes through some of you (and you don't even realize it sometimes!).  I find myself sinking down sometimes (ironically) when I am NOT in the middle of a crisis.  And I have to read and listen to get myself back on track.  Thanks again.  Hope comes from trusting - fully trusting God to take care of whatever I have to worry me or concern me.  And I want to overflow with that hope instead of being mired down in that old pit.  It's like Reverand Thrasher once told me - dancing in the rain (he told me before that was popular!).

"God of hope, I pray You fill me with all joy and peace as I trust in You, so that I may overflow with hope by the power of the Holy Spirit."  Romans 15:13

The Bear ~ 2014

Thanks to those of you who prayed for Andrew tonight running The Bear!  Some of those texts miraculously made their way off the top of Grandfather Mountain, and I knew people were praying as Andrew was weighing on my heart.  Then my phone would not work anymore up there, so I knew God let them go through!

I heard my name but paid no attention until I saw Coach Curcio coming towards me.  I don't mean to always think the worst, and I knew Andrew's knee was hurting as were his wisdom teeth.  But my first thought seems to be panic, so he told me quickly (because I think Coach knows how I am) that Andrew's knee was hurting; so he was in a van with Coach Weaver.  Even though I felt disappointment for Andrew, I was relieved it was not something worse.  Andrew stopped around 1/2 a mile and jogged down the road to find Coach Weaver in the pick-up (trail) van.  I know that was hard for him, but it was smart and responsible.   And I totally trust Coach Weaver and Coach Curcio to take good care of Andrew.  So that made me feel better to know he was with him.  At the end, he ended up in a vehicle with his high school coach, so he got to visit with everyone.  

It was fun to watch the runners come in, and I am the loudest yeller for my friends.  Standing in such a majestic place is good for my soul.  But my heart hurt a little.  I told Pete I have come to depend on these Bear finishes to lift me up and away from all we deal with during the year.  He told me maybe I need to look elsewhere.  But I told him that that's why The Bear is so special to me.  The wonderful races Andrew has had in the past give God the glory.  Because we know they are miracles.  And I really wanted another one tonight.  I have struggled all week, and now I know a little more why.   Andrew was fine. He was a little disappointed, but he knew he did the right thing by stopping.  He did not want to risk his summer training.  It was someone else's turn to finish up there near the front.  

Laura sent me some pictures from the start, but they did not come through until we got back to the car.  There he was, and he would have finished in that spot if he had run his best time.  He jokingly said to add DNF to the pictures if we put them on Facebook (Did Not Finish).  So at least he was joking, and I realized I needed to straighten up. 

I sent an email to someone dear to me earlier this week with some information on someone we both knew.  I thought he would want to see it as we both really liked and respected this man we met in different decades.  When I came home from the Bear, I had a message from him.  Short and nice and encouraging.  And I sit here with tears rolling down my face, because he has no clue how my night has been.  Or my week.  But he knows so much more about what we deal with in our home than probably anyone outside of our little family.  Because he deals with this stuff too - or has in the past.  So I know without a doubt that God knows my heart.  He knows what I need.  And He knew I needed a little reminder that He knows - and most of all, He cares, tonight.  And this person responded to my email at just the right time.       

Andrew is waiting for medical clearance to get his wisdom teeth out ASAP.  They are killing him, and he has been taking Advil constantly the past week.  Just another reminder that there is nothing simple about anything about him.  But at least the doctor cares to take good care of him. And though I wish life were a little easier or simpler for him sometimes, I want him to be who he is supposed to be.  And I am so blessed that I am his mom.  I will just keep trying to do a better job - and I don't mean that in a bad way.  I just have to keep trying to keep up and looking to God for guidance and not get bogged down feeling sorry for me! 

Thanks again for praying.  We know prayer works.  We can see it so clearly in our lives.  Andrew and I are helping at the Grandfather Mountain Marathon this Saturday, so that will be fun for us.  He just bounces back and keeps on going.  He is a great example for me!       

Just some fun facts about The Bear and my boys - not including the years Pete ran!

2008  Andrew 41st (39:13)

2009  Andrew 9th (35:30)   Peter 7th (34:38)

2010  Andrew 6th (34:59)

2011  Andrew 22nd (38:09)  Peter 10th (36:38)

2012  Andrew 3rd(!!!!!!!)  (32:56)  (would have made him 2nd place this year!)

2013  Andrew 4th (33:46)  Will 11th  (36:39)

Another fun fact ~ When Peter was near the front when he was young, he saw Ryan Woods on a turn in front of him and yelled for him and cheered him on (while Peter was running up Grandfather!), because he wanted Ryan to win!

More Church Updates

Last week, we were excited to have some visitors at church on Sunday and Wednesday night.  It was great to see some friends and meet some new people.  It is so nice to have that love and support.

Today, we had more visitors at church.  Some we knew.  Others we did not.  And some we just had not yet met in person!

Our sermon today was on suffering.  It was a great reminder to praise God in suffering and trust Him.  We cannot expect to understand everything, but knowing that He is with us will help us get through.  And what a great opportunity to share Who sees us through.  We had communion too.  Again, another time to remember the greatest sacrifice ever given - God's only Son for us.  It seemed fitting to have communion this Sunday following the 4th of July when we remember the sacrifices made to keep our great country free.  We don't need communion or the 4th to remind us of things we should ponder on every day.  But they are times to get us back on track and remind us what we often take for granted.

After church, we went to eat with someone Pete had met through his job.  She was a delight and gave a wonderful testimony about her trip to the Holy Land and how it has affected her - during her trip and when she got home.  I look forward to going one day myself...

Another great thing about communion today is that we had to add more to what we had.  What a blessing - to not have enough and to get a refill so everyone can participate!

Have a great week!

Sam's Stuff...Again!

Sometimes it seems Sam cannot catch a break on some things!  His little eyes cross ever so slightly (but enough for people to make comments) when his glasses are off.  But his eye surgery at age 2 was successful, and he can see.  That's what is important - not the insensitive comments.  His teeth have had such a hard time coming in!  He had an extra tooth that garnered lots of comments.  We had the nicest oral surgeon remove it -once we found out it was extra!  Then one big front tooth came in, but in a year and a half the other did not.  That has caused more comments!  We went to an orthodontist who sent us back to the oral surgeon.  In the time that we made the appointment, his other tooth started coming in quickly.  And in the week between the consult and surgery, we literally changed what we were doing; because he no longer needed a slit cut in his gum.  He had two baby teeth removed.  He did not eat from 11:20 the night before until the afternoon of the next day.  His surgery was at 11:00.  He did well until right before.  He did not get the meds until closer to 11:30.  He was hungry, and his blood sugar was on its way down.  But he held on and did well.  He was very sweet and cooperative.  Without moving, he said "Ow, ow, ow" a couple of times when getting the numbing shot.  Such a sweet little brave boy.

We had gone to Walmart before we went, hoping a toy would take his attention from not eating breakfast.  He asked Andrew (who was going to meet us at the doctor) to please go with him.  They picked out a super Nerf gun.  He was so excited and talked all about it in the doctor's office.

After the surgery, we got home; and he had all three brothers hovering over him and checking on him.  The doctor's office called to check on him, and I assured them he was fine.  Then his lip swelled.  It was huge and scary.  No one seemed too concerned, but I gave him his antibiotic (after it swelled) and ice.  I went to help Pete with his cleaning jobs.  Sam had eaten some, so his sugar was okay.  His swelling had not gone down in hours, so I called one of our sweet nurses.  She checked and told me to try a little Benadryl.  He was mostly back to normal today, but it's still puffy.  Pete thinks he bit his lip while everything was numb.

Well, when Mommy went back to Walmart for Benadryl after cleaning, I just got the Lego set he had picked out - too.  He deserved both after such a day.  He was hunched over in his little chair with his lip sticking way out putting together a new Lego set with the directions out in front of him.  Next time I buy something from Ikea, I know who I will get to help me put it together!

Now we hope Sam's teeth will come in like they are supposed to.  We hope this is the last of his "extra" stuff!  We are thankful for those who prayed and checked on him yesterday!  I am thankful for his brothers and their attention and time in taking care of him!

Thankful Today

Andrew and I were thankful to be at the neurologist's office and not be able to remember the date of his last seizure which was before the last appointment!  Dr. Crittendon was glad too.  He did a quick neuro exam and then left things as they are.  He said he did not want to talk too much about what we have already talked about, because things are going well.  We had increased a drug that is used with other seizure drugs.  We were at the limit, and then neurologists started pushing that limit up 100 mg and had good results.  So we hope we are at the max.  We still pray for healing and for these to go away and for no medication, but we were all happy in that room today!  Thank you, Lord!

Sam got home (again) before Andrew got to the bus stop!  He was about 40 minutes early getting off today and just walked down our road.  One problem is that a neighbor's dog ran at me and barked aggressively the other night.  I yelled at it, and it stopped; but it kept acting like it was coming after me.  That would terrify Sam.  Andrew was getting ready to walk up the road when he saw Sam.  When he checked Sam, he was 42.  That is very low and can be dangerous.  I am about to give up on the bus except Sam LOVES riding it, and I want him to continue to enjoy the reading camp.  So I think I will just have Andrew go even earlier and call to see if the schedule has been changed.  But I am thankful he got home safely and was not scared.  He is growing up, and I want him to be independent; but with dogs and big cars going way too fast for our road, it scares me a little that he has walked alone down our road twice now.  The bus driver is probably wondering where on earth we are!

He only has one more day this week and then has his teeth pulled and something else on Friday.  Since he cannot eat, we are going to Walmart before we go to the oral surgeon.  There is nothing like Legos or outside toys to play with your brothers to get your mind off breakfast!

Have a great rest of the week!

Church and VBS Today

We started Vacation Bible School tonight at church.  We had a supper and then VBS and just got home a little bit ago.  It was a small group, but I told Pete that I could just feel something wonderful tonight - a chance to speak to at least one child who was ready to listen.  Even though I did not teach tonight, I was thankful for the opportunity to answer a question that was asked and share (along with another teacher) about Jesus.  Pete had to go to Winston for work, so he missed the first night.  I am anxious for him to be there tomorrow.

Pete is doing a series on the church for his first month of sermons at Middle Fork.  He said doing a series is popular right now, so pastors can stick to a point for a few Sundays at least.  Today was on giving.  We had some visitors from Kentucky, but the message was so good for anyone and everyone to hear.  We need to be obedient to God.  We are accountable to God.  The boys and I talked on the way home, and I told them that once you see how God provides, you can trust more and more easily.  It was not prosperity preaching.  In fact, it makes me glad I am not prosperous by earthly standards- too much to keep up with.  And I need to remember all of the times that things seemed so out of reach - one of them being different medicines my children needed - and how God worked it all out.  It doesn't mean I will never worry about money or bills, but I do appreciate the reminder of giving it over and doing what I can not to make it a huge focus or stumbling block in my life.

There are so many ways of giving - other than money.  We did not have time for those this morning, but I was thinking of time and gifts and donations and volunteering.  I think of Christmas time and those who need a card, maybe not even money but just some contact.  I think of hardworking families that don't have any outside help and how we need to look around us and help where we can.  I think of lonely people who need to have lunch or get a card in the mail.  Years ago, I tried to cut down my Christmas card list - or at least the number of people I sent a Christmas picture of my boys to.  It was just not worth it.  I know some of those pictures end up in the trash, but I would rather take that chance than to take away a blessing someone may get.  I know how much I love getting cards and pictures and how much I appreciate it!  We talked tonight about shoeboxes.  And it makes me think about helping people far and wide - in the name of Jesus and trying to reflect His love.  And to give happily and out of the abundance He gives.

I sang in church this morning.  I have not sung in church in years, but Pete asked me to.  I was just trying to be willing.  So I sang "What Love is This?" because the words are beautiful and talk about the love Jesus has for me - that He gave His life for me and made a way for me to know Him.  Andrew is learning to do the sound and did an excellent job.  He knew I was a little wobbly at first, and Pete got up out of his seat and came to stand beside me while I sang.  It almost did me in.  I was already feeling so emotional singing of how much God loves me - me individually.  Like He loves you.  You, individually.  But I tried to get all of the words out because they were important.  I did not look at anyone.  I looked at my words that I have totally memorized.  And I looked up at the beautiful wooden beams like I was looking up at Him.  It was not about me singing - it was about the song sung to Him about His love.  I think the boys had a bet that I would probably cry, but they were mainly joking with me on the way home.  They know why I get emotional, and that is what is important.

I had a chance to talk more to the wonderful people at our new church, and God has blessed me at a time when I felt so resistant.  Change is hard for me.  I trust God, and it's still so hard.  I have felt such turmoil in the past several weeks.  People I depend on seem so far away.  Pete prayed with me yesterday (again on the way to the dump with yet another load - my basement is looking better and better!).  His prayer was right on and so much more than I had shared and told him I needed.  He must be more observant than I have realized the past few weeks - and God laid it all on his heart.  So as we got rid of more "stuff", I also felt some of the weight I have been carrying lift.  It's not all gone, but I know it's going.  I appreciate those who call and check on me.  I feel apologetic for seeming so out of sorts, but they gently remind me to keep trying to get back on track.

I may not be off as much as I think.  Casting Crowns has a song that says your world is not falling apart but falling into place - which I see as a huge puzzle that we cannot totally see.  We trust that what we go through is part of the big picture.  And it talks about God being on the throne and being in control, so we just need to give up hanging onto our burdens.  I think I listened to it five times yesterday.

I promised a little person chicken nuggets.  He is at 150, and I hope he holds that up until bedtime and through the night!  He catches a bus at 6:30 right now for a summer reading program and will not let me take him at a later time.  He loves riding the bus.  He goes Friday to the oral surgeon to have two baby teeth out and a slit in his gums to help his front top teeth come in and space out better.  He seems fine with that.  It will be tricky to keep him at a good number without eating - his surgery is at 11.  But we have planned to sleep in and then go to Walmart for a treat before his appointment so maybe eating won't be too much on his mind!  It can be scary if they are out of it and start dropping, so we appreciate prayers for a smooth time then.

Have a great week.  Thanks for reading this and for praying for our family.