Quick Update

Andrew went to his immunologist early (b/c of insurance changes coming soon), so it was pretty routine.  We did labs, but we did not check his IG levels this time.  That was a little odd to me, but I think it was because he has gone all fall without any serious infections.  He had a terrible upper respiratory something when he ran his regional meet up in Charlottesville, VA, but he ran a great 10K.  His liver levels are still up on the higher end of normal but were actually down a little from a couple of weeks ago.  I very much dislike going back to the numbers watch, but it seems that that is what I do.

We also met with his neurologist and increased his meds a little bit.  We talked a lot about options that are running out and maybe other options.  Please pray for clear guidance.  And please still pray for healing.  I feel as Andrew reaches age 20 that I have run out of my encouraging words from others I have held onto for many years.  The teacher who told me he believed God told him to call me one day and tell me about his own son.  The people who knew someone who struggled with seizures but went to college and never had another.  Only God and I know what they all are, and I would explain; but it’s too difficult.  But I have held onto these stories that people have told me.  The scenarios seemed like they could work…but they haven’t for him.  I know he can have his own story.  I know he does.  But in coping all of these years, I have held onto some hope that involves me making things okay by a certain time.  I feel like we are running out of time.

When the nurse measured Andrew the other day, she rattled off numbers and then said his height, which was a full inch above what I thought.  Well, she miscalculated as I thought of the first number.  My hope sparked and then just deflated.  It seems he has run out of time to grow.  I have had the talk about height from so many doctors.  I have wanted to yell at someone!  Looking back, I feel like I did not push hard enough.  I missed the opportunity to help him.  I trusted people who were not helping him as much as I thought they were.  I know he is hard to treat.  I just wish I had taken him other places sooner and not been so nice.  I wish I had been pushier.  Then I think that I am wrong.  I know God knows.  I know He can still make Andrew grow.  I know Andrew does not have to.  I just look at it as MY failure.  And in this case, I do appreciate those of you who remind me how much your brothers or friends grew in college! 

I think I equate Andrew growing with his body finally healing and getting on track.  I know maybe that is not what is meant to be.  And that is hard to accept.  I realize as he gets older that it’s harder and harder for me.  I wanted to be able to send him out on his own in a good, stable way.  I am scared that I cannot yet do that.  On the other hand, he can make his decisions now – which can be good and bad.  We will be happy to help him, but it’s up to him.  I appreciate that he listens and takes part more in what is discussed.   And I am learning to let go more and more.  And that is hard.  Not because I am a control freak but because I want him to understand the whole story.

Please just pray for Andrew ~ that he can shake off some of these illnesses with such dreary futures and that he makes good decisions for his own health. 

Sam is good.  He has had some extreme lows and some unexplained highs.  But we love seeing those numbers in the 100’s.  When I checked him and showed him a 55 today, he fell back on the couch and stuck his tongue out of the side of his mouth being dramatic.  He knew he should feel bad, so he must not have been 55 long.  I told Pete at least he is recognizing more and more what those numbers mean so he can do something about it.  And I so appreciate his sense of humor.

Peter is home for Thanksgiving, and we have enjoyed actually spending a little time with him!  We miss him even though he is right across town.  And Will is good – just trying to get a deer.  I must admit I feel relief when he comes in without one again.

Thank you for your prayers.  Thank you for your encouragement.  We are so thankful.

Happy Birthday ~ Katelyn Elizabeth Ball

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

You're an Overcomer!

I continue to see things that God put in place for us the other night. And I know there are so many more. I was thinking this morning. My sister-in-law left me a message the other day that said she had heard a song and had told me that when she hears it, she will think of me. She heard it and called to tell me she thought of me and to remember that I am an overcomer. The point of the song is that through Jesus we can be overcomers - not give up and give in to circumstances and hardships. I cried because the message was sweet. I appreciated the reminder but always want to be quick to point out that I alone am not anything. Only by His grace, mercy, and love can I do anything. And I know that is what Cindy was reminding me. I also probably felt a little "Uh oh", but I shrugged it off thinking that we had done well while Pete was gone. No one was very sick. We had a couple of low blood sugars (and some highs) but nothing we could not handle. We had gotten Will to school by 7:00 every morning for 0 block welding. That was a huge feat. We had done some major cleaning while Pete was gone and had even begun crown molding in the den (Will). So I saw how God was helping me take care of my responsibilities AND the things I needed to get done - the usual things of fall cleaning and organizing and just trying to simplify life. Cindy is so sweet. She always has been. She is way way above me on the sweetness scale. Reverend Thrasher used to say, "You remind me of my sweet little Cindy." That made me feel pangs of guilt, because I knew Cindy was so much sweeter than I am! Then I went to spend two weeks with Cindy when she lived in England. We had a chance to talk (I think I woke up talking, and I fell asleep talking!) and just do everything together for two weeks. I did not have any children yet, but Whitney was expecting at home. And Cindy was not yet even dating my brother. We became like sisters. And then I realized what Reverend Thrasher meant. We were a lot alike in the way we thought and what bothered us and what we needed to talk about. That made me feel so much better. Not only did I find a forever friend, sister, and ally, but I knew it did not matter if Cindy was sweeter than I am. She is a gift. A gift of someone who understands me and slips in quietly and is just there. She does the most thoughtful things and brings a comfort that only people with that God-given gift can bring. Today, as I remember her message, I know God was using Cindy once again to encourage me. He does - even if we don't see it clearly. But we feel it. He is our only constant. Our only Hope. How wonderful to have people who slip in and remind us of these things. I have some of the most wonderful family and friends anyone could have. I am so blessed. I don't know why God chose to give me so many supportive people, but He certainly did. I will update soon and not leave this blog hanging like I have been doing lately. I want to share what God is doing, because it helps me so much that others need to hear. He hears us where we are. He is with us where we are. He loves us where we are. Always. If my people stayed silent and did not share, I would not get those blessings He intended.

Another Tough Night

Last night was rough. Pete got in yesterday morning, and we were so happy to see him. Andrew left to go to a track meeting before 9:00, without me knowing. Pete went to bed, after traveling over 6600 miles in the last day, and he barely woke when a call came in. I noticed the different ring and asked him about it. He said he saw it was from Coach and thought he could not answer because he was in Israel! I went upstairs to ask Andrew why Coach might be calling, and his room was dark. My heart sank as Will told me he had left for a meeting. At that moment, my phone rang - Peter. He was heading over to the field house to check on Andrew. They had called him. I was in my pj's with my glasses on, ready for bed. I jumped in some clothes while waking Pete up. He got dressed, and we drove off with the flashers on. I drove while Pete talked to Peter. Coach had called me and told me they had called 911 since Andrew was purple.

I was in disbelief - not expecting the call since he has been doing so well for so long. I was sad, but I was determined to get to him as quickly as I could safely. We drove up to the stadium and were met with all of the lights from two fire trucks, two ambulances, police, and we were thankful that Peter's friend was waving us down and showing us where to go. I ran up the stairs to a crowded hallway with all of these people in uniforms. I worked my way past them to see Andrew. And they were clearing the way. They knew I needed to be right beside him. It was probably almost a minute before I realized that the fireman holding the oxygen for Andrew was Lonnie, a fellow church member and friend. Andrew was back, so I could breathe better. We answered questions and assured them that we have a night plan. We have figured out what seems safest and best at night to get rest. We walked a wobbly Andrew down the hall and down the elevator and out to the car. We thanked everyone and were thankful he was okay.

We got home and got him in bed. About an hour later, I heard him get up. His head was killing him. So we got him a little Pepsi and ibuprofen, and I tucked him back in bed in my spot. I was within earshot on the den couch (this is where the house plan works out well that our bedroom is where a garage was supposed to be originally). After that, we slept well until after 5:00. Everyone got to school and work on time. All homework had been done and finished up. I took Andrew to the doctor and got some labs (please pray the liver labs that crept up just a little will be normal when we check them again next week) and had him looked at before he went on to class. Most people would not expect someone to go to class the day after something like that. But Andrew does better on a schedule getting his stuff done. He does not like to be behind. Coach told him not to come to practice, and he was relieved to have a little break since he was so tired. He did well and came home this afternoon and took a nap. No headache today. Nothing. Just tired.

It's hard to know your friends and teammates saw you in that state. It's sad to do so well for so long and then have to start over. I know for me that the longer we go without an emergency, the better I feel. I am not fanatical about missing any phone call. I breathe more deeply and feel more at peace more of the time. Then something happens, and I am on high alert again. I sleep lighter and keep waiting for a call. I am sure Andrew goes through something similar, but he does not think about it all of the time like I tend to do. Peter put a post on FB about talking to God about these things and feeling the burden being lifted from his shoulders. So I have tried to do that today too. I let myself feel what I don't like to feel and get it over with. I keep praying. And this weekend, I will watch a sad movie to get the crying out. It's just stuff that seems to help after trying to do the main thing. Turning it all over to God. He is still in control. I don't have to understand. I don't have to think too far ahead (which I am so bad about doing this so much). And I will have to constantly remind myself and be reminded of this.

I pulled up the song by Fernando Ortega last night called "Jesus, King of Angels". It is a song about watching over this house tonight and keeping the fears and doubts away. It reminds me that God cares about every single little thing that happens. I will post the words below.

That's all for now. Andrew and I are watching Shark Tank. My world traveler is asleep as are my two blondies. I am enjoying the normalcy of this evening. Andrew runs in Regionals next week in Charlottesville, VA. Please pray for him to be better and be able to finish training. Please pray for safety for him and the team as they travel.

Thanks to all of those who pray for us. Thank you for caring for us. If you don't have this assurance, please ask someone about it. Andrew knows where he is going when he dies. I know where he is going. If I didn't, I cannot imagine facing this time and time again. Even Pete, flying across the ocean into what some consider a dangerous place, knows where he is going so ultimately does not do stupid things but does not worry needlessly while gone.

http://www.youtube.com/watch?v=6wOhVh2bct8

"Jesus, King of Angels" Fernando Ortega

Jesus, King of Angels, Heaven's light Shine Your face upon this house tonight
 Let no evil come into my dreams Light of Heaven keep me in Your peace

Remind me how You made dark spirits flee
And spoke Your power to the raging sea
And spoke Your mercy to a sinful man
Remind me Jesus, this is what I am

The universe is vast beyond the stars
But You are mindful when the sparrow falls
And mindful of the anxious thoughts
That find me, surround me and bind me

With all my heart I love You, Sovereign Lord
Tomorrow let me love You even more
And rise to speak the goodness of Your name
Until I close my eyes and sleep again

The universe is vast beyond the stars
But You are mindful when the sparrow falls
And mindful of the anxious thoughts
That find me, surround me and bind me

Jesus, King of Angels, Heaven's light
Hold my hand and keep me through this night