Vandenberg Family Updates: August 2016

In anticipation of our Road Race/Walk on October 1, I wanted to share our family's Type 1 diabetes story.

Just after Sam turned five, he started having some weird symptoms. He had some similar symptoms a whole year before, so we were treating him the same way and thought he was doing better! He never had accidents in the day or night after he was potty trained, so when he had them both times, we made sure to take him to the bathroom every hour on the hour in case he was having spasms or something - like we'd done a year earlier. And he never said he was thirsty but kept asking for milk.

I was gone almost the whole week before he was diagnosed. I spent the week in Chattanooga going to schools recruiting for the Office of Admissions at Appalachian. It was so hard for me to be away from my family for that long, but I only traveled 3-4 whole weeks at a time and then had some short trips. I remember calling Pete crying about something someone had said to me (in a message) that had really hurt my feelings. I remember talking to my friend Paula about it. I had let it pretty much ruin my week. I was so upset. Little did I know that "worry" would become the least of my worries soon. And I don't remember all of the details, but I try to remember that what was so important and bothering me so much earlier that week was not really important. And I try to not let those things overwhelm me now. It can be a battle!

I remember leaving a school that afternoon and stopping at a McDonalds to change from my suit into my traveling clothes. It was going to be a long trip home, and I was ready to get there. I remember being in the office late that night returning my materials and cleaning out my state car. I cannot remember if it was Thursday or Friday.

Saturday, Sam threw up. He did not seem that sick, but we were supposed to go to Winston Salem the next morning to be at church where our niece was getting baptized. I remember telling Pete if he threw up again that I could not take him. He seemed fine when he went to bed.

Will got me up the next morning and told me Sam was sick. He had gotten sick another time, but Will got him and cleaned him up and put him in bed with him - what good big brothers do. They went back to sleep until Sam got up sick again. I put him in the bathtub and gasped. I called for Pete. He looked like a little gray skeleton. Pete said we absolutely had to take him to the ER - that he must have a bug and be dehydrated. He did not look like that the night before. That tells us how fast they can go downhill when they are so sick. That is why we MUST get those symptoms out there. What if Sam had not been at home? What if we had not noticed?

Pete and Andrew had gone to a movie the night before, and our old car would not start; so I had gone to get them. Which meant we only had one car that morning!

We all got ready to go, and Pete dropped Sam and me off at the ER and planned to take the boys on to Winston. We knew he had to get fluids, and I could call someone after church to take us home.

Will begged to stay with me. I wanted him to go to the baptism, because I felt bad about not being able to go. Pete told him he could if he would help me. And help me he did...

We took Sam in and saw someone we knew from church in Admissions. They got us right back. It was not crowded that early on a Sunday morning. The nurse asked a lot of questions, and I was shocked to see that Sam had lost about six of his 35 (or less) pounds. He was crying and asking for water and complaining that his stomach hurt.

The doctor came in, and I saw his name tag. I did not recognize him, but I knew his name. He was a doctor who had been so mean and hateful to me when I brought Andrew in in the second grade with a bad seizure - the first he'd had since he was first born. He was so ugly and scared me and refused to check on Andrew. He had also refused to call our pediatricians. I immediately told God that I could not handle him.

But God knew what He was doing. The doctor was loud and dramatic, but he was caring and got right to work on Sam. He asked if anyone in our family had diabetes. He said Sam had diabetes or pancreatitis. And then puzzle pieces came flying together in my brain.

I am like a lot of people. I had heard of diabetes. I knew to be sorry for people who had it. I even knew some symptoms. But they did not present in a clear fashion.

I noticed Will sitting on the floor over in the corner listening. When the doctor left, he had tears in his eyes and asked, "Will Sam be okay?" I hugged him and told him that we would find out all we needed to know and take care of him. And that he would be okay.

Sam was begging for water from the "water hose" (water fountain) in the hall. He was pointing to his IV and then to his mouth just in case we were not understanding that he was dying of thirst.

My little gray skeleton was so strong that five people could not hold him down and get blood out of his arm. I was so thankful Dr. St. Clair was on his way at that point and told them to just wait. Dr. St. Clair took over, but the other doctor still came in to check on Sam. He knew he was very sick, and he showed he cared.

Will had my phone and was texting people - I did not know it until I started getting calls. Pete called from the church in Winston. He said he would come on after lunch - because we still did not know how serious this was. And Carla came right on from Sunday School. Other friends were out of town, but Will covered a lot before I knew what he was doing. He was able to get in touch with my sister and niece who were coming back from camping and should not have had service.

On the way up to ICU, Sam was allowed to have ice chips. There was never a cuter little boy in a huge white bed sitting up shoveling ice into his mouth as he was wheeled to the elevator. If he did not look so terrible, it would have been sweet.

I asked Carla if she thought we'd have to stay overnight - when we were still down in the ER. Bless her heart, she and Dr. St. Clair spoon fed information to me until I could comprehend what was going on.

We got settled, and Pete sent me home with the boys while he spent the night. We are the only ones we know who stayed at Watauga and were not sent off the mountain to Winston or Charlotte. We had the room right at the nurses' station.

The next morning, I returned with a notebook and folder ready to learn what we needed to learn. Pete went on to work. Still no clue...

They checked Sam's blood sugar, and he was in the 40's. So they gave him a snack in a hurry.

I remember that day was a blur. We had lots of great visitors, and I had a lot of education. But I knew I would never be able to give my child a shot, so I wondered how we could take him home.

But the biggest thing I remember about that day was that soon after Pete left, Sam started screaming and crying. He screamed and cried but let me hold him for a solid 15 minutes - which seemed much longer. The nurses kept peeking in but did not bother us. I think he needed to get that out of his system, and he has never done it again. I knew how he felt. I wanted to scream and cry too. A lot in the next few days, weeks, and months. I mean, we could not feed him or let him sleep or go to sleep ourselves until we did all of these awful tedious things. I wanted to go back to last week when we did not have this.

I remember sitting and watching Disney with him (we did not have that at home!) after we checked his blood sugar, and he'd cried. I remember when he was sleeping, and I sat down to close my eyes; and the diabetes educator would show up to "teach" me more. She did a great job. I was just tired and overwhelmed. And I knew I could never do this.

Reverend and Mrs. Thrasher called on the hospital phone. They gave me tons of scripture and encouragement in about five minutes. Then they asked to pray. I remember stretching that phone cord and grasping the foot of my sick, sleeping baby and weeping as they prayed over us. And I felt something rise up and renew inside me. I knew God was with us. I knew He would help us. I had known that, but I was soooo tired.

Pete brought the boys by after practice. Some of their friends who were Type 1 had talked to them. And boy, they felt better. They saw their friends were "fine" and knew Sam would be too. I had moms come to see me. One drove in the pouring rain to get us the JDRF backpack. She was determined that we would have that information. People came by and prayed and brought gifts. One teacher pulled one of the boys out of class and told him that he knew all about diabetes if he had any questions or worries.

We had become members of this club, and it was awful but God provided so much at the same time.

I specifically prayed that week that Andrew would not have a seizure while Sam was in the hospital. Fall was typically a tough time for him, and Sam was in the hospital on September 20th. On Tuesday night, September 22, Pete and Sam were asleep on the pediatric floor after we had been moved from ICU. Andrew did not feel well, and I put him in bed with me. Around midnight, he started talking about geometry. I flipped on the light as he went into a seizure and then it seemed another. I called 911 and got a man on the phone (as opposed to some women who were awful to deal with in the past). I told him I could not handle this and that my husband was at the hospital with another son. He gave me information while he had the ambulance to our house in record time. He had that ambulance here in the time that I would have still been giving someone else my address. Andrew was not breathing, and they picked him up and ran out - not even bringing in the stretcher. One of them, or a fireman, told me I had to calm down before I could drive to the hospital, and I remember thinking that they must think I was crazy. But I was yelling at Andrew to breathe and for God to please save him. I guess to them I looked crazy, while I prayed to God as loudly as I could.

I ran inside and jumped into clothes. I asked Peter and Will to call Carla while I called Pete on my cell on the way there. As I drove away, I saw Peter and Will sitting on the front steps of our house in the middle of the night without their parents. They were only 12 and 14. But I was certain Andrew was not okay, and I was crying and praying the whole time in the few minutes to the ER. Pete called me back as I pulled into the hospital parking lot, right behind the firetruck who probably had waited to see me leave to make sure I was okay. He told me he was down in the ER with Andrew and that he was breathing and okay. I felt such relief. Carla had come and stayed with Sam until Pete got back.

My parents came to help us get settled back in. When I went to sleep again that night, I could hardly believe it. I had warm wet tears and told God I just could not do this. But instead of being hopeless, I felt reassured. I knew He would have to take care of ALL of this. And I knew He could. And I have to still remember to trust Him and let Him work. That's the only way.

After that eventful night, they hurried our education so we could bring Sam home. We had our own glucose monitor but came home with two vials and syringes. Two different insulins. We had to draw up the medicine like you see on TV. And we were not good at it. And we had to give Sam a shot with a long needle at a 45 degree angle in one of the skinniest little legs you ever saw. It makes me cry to remember.

Sam in the hospital at age 5

I remember a friend from work was there the first time I checked Sam's blood sugar on my own. We (Sam and I) both cried, and she wiped tears too. I remember when Pete called me late Tuesday night (before the other events) to tell me he had given Sam a shot. I asked how it was, and he told me it was so hard.

Though more hard days were coming, I can say that by the end of that week, on Saturday, we were cheering on Andrew and Peter at their home cross country meet. It did us all good to have a "normal" day. A new normal but a good day with people coming up and encouraging us and introducing themselves to us as Type 1 parents. Andrew did amazingly well and was his usual miracle self.

Mealtimes, night, mornings were all still hard. We took Andrew to a neurologist the next week at Duke. My mom had to watch Sam while I took Andrew in to see the doctor (who was hateful and had no clue about us or our family and seemed to just resent that we were a work in). He got thirsty, and she did not know what to give him. It was a miserable trip, and I was about beside myself. I remember only being able to pray and ask God to help me.

We went to an endocrinologist a few weeks later and got insulin pens - which were the best thing ever. We learned a lot and still keep on learning today.

Will was able to help me a lot at school - checking Sam's blood sugar before lunch. All of the boys learned to count carbs and give insulin shots and check blood sugars. My boys know more about ratios than they even know they know. They know more about responsibility than they know they know.

I tried to go back to work. I had to leave a lot. They were gracious to take the rest of my travel and reassign it. I finally resigned at the end of the year and took a part time job in the back at our pediatrician's office. It has been a blessing as I can come and go as I need to to take care of Sam. He does not have many people who can do it.

Sam has never been hospitalized after that initial time at diagnosis. We had one morning when he jumped on me and screamed and cried that he did not want to die and could see things crawling on his arms. He was at 42 but must have been there for a while. He had just gotten up, and I was getting ready to check him before I went to work. It was scary, and the ambulance came but did not have to take him as we had already gotten him up in the 80's while the 911 dispatcher was still asking Andrew questions. It took over 15-20 minutes for them to send someone, so God gave me an extra arm to put icing on Sam's gums, get a glass and pour orange juice, and sit in the floor and slosh the juice in his mouth until he had enough to make him stop jerking like he was having a seizure. Then the boys woke up. We are thankful that is the only extreme he has had even though there have been many close calls. We have only "lost" his diabetes kit twice - once during a bomb threat at school (those people don't realize what danger they put people in) and when he left it on a sidewalk one time. We got it back pretty quickly both times as it's his lifeline.

Sam doesn't go to camp. He doesn't go spend a week with his grandparents. He can't right now. But he is fortunate that he has three big brothers who love him. He loves them too. And he does not have an alert dog, but we have a white golden retriever (with brown spots) who has gotten me up to check him before. Lucy did not know that's what she was doing, but God used her. And Sam loves Lucy and Will's puppy Sadie and loves playing with them.

We continue to use insulin pens, as he did not want a pump yet. We deal with learning issues that are made tougher by high and low blood sugars. We found out last year that Sam probably had a stroke (at least some sort of event like Andrew had) before he was born, and that has affected his learning. So we deal with anxiety and other issues that arise from other things.

But we are so thankful for those who help us on this journey. There are lots of tough nights, but we are determined to do our best with this. Just this morning I woke up almost panicked thinking I had slept too long and had missed checking Sam in the middle of the night. My biggest fear is that he will get too low at night and die in his sleep. Next, I worry if I don't keep his blood sugars under control that I am ruining his organs. It's always something. And then if he is doing okay, the insurance part is a pain. Or his pens malfunction. Or something else.

We are thankful for the staff at school who take care of him. We are thankful for doctors and nurses. We thank God for all He provides.

Sam was baptized last year - overcoming his fear of doing it in front of people. I want Sam to always know Jesus is with him and will take care of him. I want him to learn good habits and how to take care of himself. And though I would give the diabetes back in a heartbeat, I am thankful for what God shows us during these difficult times.

I am hopeful for a cure. Sam told Andrew months ago that he hoped the cure was a pill, because he did not want anyone putting anything in his body. Evidently, Peter had told him they were working on an artificial pancreas. Pete said he hated that Sam was diagnosed at such an early age, because it's hard on his body. But then he said Sam won't remember life before diabetes. I don't think any of us do.

As we prepare for our first JDRF Road Race, I am overwhelmed by the support we have already seen. My friend Paula gave us her fall road race spot, and she is helping get us organized. We have had tons of help and offers of help. We have two main objectives. We want to raise money for JDRF, as they have proven to want to find a cure as well as better ways to deal with this disease. And to raise awareness. Too many die because they are diagnosed too late. We want those signs out there on the radar more than they are at this moment. And we claim the verse Joshua 1:9 ~ "Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."

I have often felt dismayed, but I just have to remember that God knows all and will provide. We just need to keep trusting Him. And I do - with all of my heart.

I'll add the online application link soon. Or you can register at JDRF if you want to walk or run or form a team! Thanks in advance!

http://www2.jdrf.org/site/TR?fr_id=6487&pg=entry