This is a recent email I sent adding to the post below:
Just an update on the boys. I did not send one after Sam and I got home from the hospital and testing, but I have not updated my blog since that last post about him either. Thanks to those who pray for them and ask about them!
This is a pretty much a repeat for those who read my blog, so sorry! The EEG was good. No signs of seizures. He did so well. They did not need anyone to help get him hooked up, and he actually talked and joked a little bit with the tech. She told him that she would give him a blue bandana to cover his head and a green backpack for his cords. She asked if that was okay. He said, “Yes. I love green backpacks. My mom always gets me blue.” That tickled her.
Cindy went with us and had to make a few trips to the car to bring in all of the fun people sent for him/us. He had puzzles, games, books, Playmobil, and Legos, among a lot of other goodies. Thank you to all who sent those with snacks and things to keep us busy. He could order movies from a huge list. They brought in a Wii with loaded games that he played and played and played. He was so good and was never bored. Since he was on the neuro part, he received a Joy Jar when we checked in (the organization started by a little girl who died of a brain tumor – her dad was a pastor at one of Rick Warren’s churches at the time. It’s NEGU.) and a small monkey (that he gave to Peter for Valentine’s Day). A therapy dog came to visit. It was the biggest Golden Retriever I have ever seen. His name was Jacob, and he was huge and beautiful. He came right after Cindy and I were wiping our eyes from watching Marley and Me. Sam was excited, but he was really missing Lucy (his own white golden retriever).
So Sam was not bored. He did not complain at all until they took the leads off. They used something like fingernail polish remover, so it was hard for him to breathe. It was hard for me to breathe it in too!
We know he has an increased chance of seizures at some point, but there is no sign now; and we are so so thankful for that.
Since he does have a place like Andrew has on his brain (just in a different spot), we did decide to try him on some medicine that will help with focus (one of the areas where his brain is affected per the MRI). He has missed school for weather since we started it, but he is picking up work at home and doing it without being asked. Now Peter has started to bribe him, so he is working even harder. We are hoping and praying this will help. And we are hoping it is temporary until his brain takes over and does what it should, per the neurologist. We have not seen many side effects – except not as much grazing eating which is good since he is diabetic. He is in a sweet little mood all of the time and has not changed there. I just cannot wait until he curls up with a good book to read alone.
Andrew was sick the other week with bronchitis. He saw one of the docs and got an antibiotic. Later that day, he got worse and ran a pretty good fever until late at night. Since we are so concerned with seizures with fever, I got up in the middle of the night to check on him. (He had told me sleeping on the little couch in his room was not necessary – though he felt so terrible.) His fever had broken, and he had not had a seizure. However, he felt so much worse that I took him to the doctor again, at his request. It is amazing that he did not have pneumonia, but he was just very very sick with something that was going around. It took a few days, but he felt much better after that. Sam had something similar the weekend before and actually ran a high fever. So we think they caught the same thing. They don’t usually share illnesses, and they don’t usually pick up viruses going around. Sam had very low blood sugars through his – which is the opposite of strep. So we knew this was certainly something different. Andrew has lost some weight again, but we are thankful he is feeling much better and did not suffer any seizures.
Andrew and Peter both have been going out of their way to spend time with Sam. We have been having game night every Thursday. They love it and are quite competitive. They are planning on going out in the snow today – for maybe five minutes or less!
Thanks to those of you who pray for Will. We have not seen him much, but I have seen him some. These last few months have been the hardest of my life. It’s hard not to be mad at people, and God has given me other people (especially on my worst days) to comfort, encourage, and reassure me during this time. It’s not about the other people; it’s about my child. The one I love so much. And I have to remember that God loves him more and knows ALL. And I try to rest in that. I have been doing better turning him over. I had a good meltdown yesterday, but I was working on bringing wood up from the basement and really just took it all out on the wood. I just miss him so much. Please keep praying for him.
I know I am not alone. I can feel God’s presence. He promises to be right with me. And He is. And I know I could not get through these days without Him.
In I Peter 5:7, it says to cast all my cares on Him, because He cares for me. In I Thessalonians 5:16-18, it says to rejoice and pray without ceasing and give thanks in ALL circumstances – because this is the will of God for me. It’s my life. My story. And this terrible, trying time is part of it. I have awful days trying to not doubt and not worry. The only way I can have any peace or confidence is to trust Jesus. To lean on Him. To trust Him. And that is what I am actively trying to do every single day of this. It carries over into other things. And my days are hard, not perfect. And it’s a struggle. But I know Who wins in the end.
Thanks for praying for us. Stay warm!
Friday, February 20, 2015
Saturday, January 17, 2015
Sam's Test
We got home this afternoon from Sam's 24-48 hour EEG. He did great. We got great results. The doctor looked at his readings from Friday and talked to me on Friday evening. She said she was very happy with what she was seeing (or not seeing). She told me that she would check again this morning (Saturday), and she would send us on home if nothing showed up at night.
Sam finally went to sleep near 10:00. They were videoing him the whole time they were monitoring him. They knew we were up again between 1 and 2, twice, eating to bring up his blood sugar. And they were surprised to see him up playing the Wii at 6! In fact, that activity surprised the doctor until she saw him on the video!
We have ruled out seizures. He does not need seizure medication. We are so thankful and relieved. He may still have seizures later on because of what we know is on his MRI, but he does not have to have them.
I asked the doctor if we just go back and get Sam as much help as we can and continue on. Her answer was yes. His brain shows the scar tissue in an area of learning and processing and focusing. So we need to make sure he gets rest and just keep working and praying that his brain will kick in and make up for what is missing or damaged. That is going to be a lot of hard work. But he has put in years of hard work already, as have many people who have helped him, so we will just keep working and praying.
Thanks for praying. Thanks for the encouragement. Sam was so busy, that his time went by so fast. He had lots of treats from wonderful people. And the hospital was great. We picked Marley and Me for the movie yesterday afternoon. Not five minutes later, Jacob, the biggest Golden Retriever I have ever seen, came to the room to visit Sam. He had a Joy Jar on his bed when we got there. That is a story I have followed for years, so I appreciated it so much and will try harder to follow up to support their mission. Sam said he really had fun at the hospital...
Cindy and I ran into a couple of places on the way home. It's fun to have a fellow Marshall's/Homegoods shopper with me. We were all tired, so we did not do much; but it was good to stretch our legs after being cooped up.
Andrew ran an indoor track PR at ETSU while we were at the hospital. He was happy. Pete said he looked really good and strong.
Please still pray for Will.
Thanks. We are relieved and ready to keep trying to find what works with Sam. I cannot wait to see him curled up reading a good book like his mom and great grandmother love to do!
Sam finally went to sleep near 10:00. They were videoing him the whole time they were monitoring him. They knew we were up again between 1 and 2, twice, eating to bring up his blood sugar. And they were surprised to see him up playing the Wii at 6! In fact, that activity surprised the doctor until she saw him on the video!
We have ruled out seizures. He does not need seizure medication. We are so thankful and relieved. He may still have seizures later on because of what we know is on his MRI, but he does not have to have them.
I asked the doctor if we just go back and get Sam as much help as we can and continue on. Her answer was yes. His brain shows the scar tissue in an area of learning and processing and focusing. So we need to make sure he gets rest and just keep working and praying that his brain will kick in and make up for what is missing or damaged. That is going to be a lot of hard work. But he has put in years of hard work already, as have many people who have helped him, so we will just keep working and praying.
Thanks for praying. Thanks for the encouragement. Sam was so busy, that his time went by so fast. He had lots of treats from wonderful people. And the hospital was great. We picked Marley and Me for the movie yesterday afternoon. Not five minutes later, Jacob, the biggest Golden Retriever I have ever seen, came to the room to visit Sam. He had a Joy Jar on his bed when we got there. That is a story I have followed for years, so I appreciated it so much and will try harder to follow up to support their mission. Sam said he really had fun at the hospital...
Cindy and I ran into a couple of places on the way home. It's fun to have a fellow Marshall's/Homegoods shopper with me. We were all tired, so we did not do much; but it was good to stretch our legs after being cooped up.
Andrew ran an indoor track PR at ETSU while we were at the hospital. He was happy. Pete said he looked really good and strong.
Please still pray for Will.
Thanks. We are relieved and ready to keep trying to find what works with Sam. I cannot wait to see him curled up reading a good book like his mom and great grandmother love to do!
Tuesday, January 13, 2015
Update on Sam
Sam checks into a children’s
hospital near Charlotte this Friday morning for a 24-48 hour EEG. We are hoping and praying this test will give
us much needed information on how to deal with Sam’s learning issues – whether he
is having silent seizures or not- and prepare us some for his future and what
he may need. We know what Andrew’s
struggles have been with scar tissue on an MRI.
We hope we can know more about how Sam is like or not like Andrew’s
situation. Even though it’s a little
unreal to me that we are even checking these things in Sam, I really have not
whined to God this time. He knows my
heart, and He knows my fears. And I am
really just trying to rest in Him – knowing He provides and takes care of all
of it. He is not surprised or ever
caught off guard. It’s like all of those
verses in Deuteronomy that say He will go before me. And they go on in Joshua.
6 Be strong and of a
good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee,
nor forsake thee. Deuteronomy
31:6
8 And the Lord, he it is that doth go before thee; he will be with thee, he will
not fail thee, neither forsake thee: fear not, neither be dismayed. Deuteronomy 31:8
5 There shall not any
man be able to stand before thee all the days of thy life: as I was with Moses,
so I will be with thee: I will not fail thee, nor forsake thee. Joshua 1:5
I was
going through the book of Joshua in Sunday School when we left Brushy Fork (the
church we had been a part of for many many years) in June, so Pete could be the
pastor at Middle Fork Baptist Church. I
kept going back to Deuteronomy while trying to move on through Joshua. And everywhere (everywhere!), it said that
God goes before us, and He will not leave us nor forsake us. It keeps on reminding us. That is why it’s there – in the Old Testament
– to remind us, even today. Especially
today. Trying to be a good Sunday School
teacher and teach what was laid on my heart, I kept going over and over that –
for weeks, up until the last time I taught.
And a few months ago, I realized it was for me. I am sure it was for others too. But it was totally for me. To remind me.
Reassure me. Tell me again and
again. I am not alone. God knew what was coming for our family.
The song
I heard on my way to the high school to take care of something for Will while
Pete was out of the country back in the late fall was “I Am Not Alone” by Kari
Jobe. I have shared it before. She keeps singing that He will go before
me. He will never leave me. He is everywhere. And I felt so alone that day on my way to the
school, not knowing or understanding how things had gotten so off track so fast
with my child. But I was reminded, and I
could walk in there and do what I needed for my child because I was not alone. And I cried and cried, but I have hope that
only He can give. And when that hope
gets pushed down, He sends reminders in many, many different ways.
On the
subject of Will, we still need lots of prayers for him. I have had people encourage me and advise me
and help me through these really hard weeks.
Really the hardest in my life. I
have had to let go of the takers and not let them take any more. And it’s something I have to consciously do
many times a day. I cry a lot, but that
is okay. And I pray constantly. I let the hurt go as much as I can. And I am learning more and more how to help
others by what to do or say and what not to.
I know God has placed people straight in my path (some, literally) to
give me what I needed at the moment. We
love and appreciate those who are helping him and encouraging him right
now. And, again, I am having to let go
of a lot – with Will and the stuff that comes with having a wayward child. I am convinced God loves him and knows
everything about him. He is right there
with him. And He is right here with Will’s
family as we pray and wait. It’s by far
the hardest thing I have faced in my life.
So thank you to those who pray for my boy.
I will
put an update on Sam on our blog, www.sixvandenbergs.blogspot.com
when we get home. We may not know much
until we see the doctor again. I am
anxious and ready to get this next information step behind us.
Thanks so
much for praying for us.
Love,
Wendi
Wednesday, December 31, 2014
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)
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
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
Friday, November 21, 2014
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
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
Sunday, October 5, 2014
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 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!
Friday, September 19, 2014
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 20th was hard. September 22nd 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
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