by Dr. Kerris Dillon
Our family’s lives changed forever on January 8th, 2017. It was 10:00 P.M. at night and Mike had already gone to sleep. He had to be up bright and early to teach mathematics at Jefferson High School in Cedar Rapids, Iowa. My daughter was a senior at Jefferson and would accompany him each morning to meet her friends early. My older son Gabe was now in middle school and my youngest son Kalan was in 4th grade. It was a wild time in our lives as I was working from home and was dropping and picking up the boys from school each day. Buses refused to pick up any child that did not live at least 3 miles from the school. How times had changed since I was a kid.
Our family (the Dillon family) had just bought a home for $92,000 and was hoping to flip it within 2 years and resell it. Every single part of the home needed a face lift including a coat of paint, a new kitchen, new doors, a restructuring of the backyard, etc. My husband came home each and every day to half projects after a full day of school. The work exhausted him as it wasn’t his favorite thing to do. He couldn’t stand living in a home that had a “to-do-list” the size of a small notebook. My husband has Autism Spectrum Disorder (what used to be called Asperger’s Disorder) and so does my daughter and oldest son. My family is probably one of the unique anybody will ever meet. We are a family of nerds that love mathematics, science, and neuroscience and could probably do really well on Who Wants to Be a Millionaire or Jeopardy. We are exceptionally good at escape rooms, but if you asked us to be on your softball team you would definitely regret that decision.
I had just settled into bed when Kalan ran into the bedroom holding his stomach. “Oh, my God, Mom! You gotta take me to the doctor! I’m in so much pain! Please hurry, Mom! It hurts!” This was the child that broke his arm falling off the top bunk bed and didn’t bat an eyelash. He ran around for a whole week without us realizing he had broken his arm. By the time my husband brought him to the emergency room, they had to transfer him to LaCrosse, Wisconsin for surgery because his “green stick fracture” wasn’t lined up properly. Those are the wonderful times in parenthood where you believe you are truly the worst parent in the world. “Come on, Mom! Please it hurts!” Kalan cried.
I jumped out of bed and woke Mike up. Mike had this keen ability to know when I meant business and ran to find the keys to the car. I thought for sure Kalan was having an appendicitis by the amount of pain he was displaying and I knew that time was of the essence. My EMT and Paramedic training had prepared me for a variety of medical emergencies and this was one that I knew was very serious. I had gotten a call earlier that week from his elementary school teacher that he had been falling asleep in class. This didn’t surprise me as Kalan refused to go to bed at night. He would pretend to be sleeping long enough for me to go back to bed and then find him up hours later when I had to go to the bathroom. So, to have Kalan falling asleep in class didn’t surprise me given his night hours he kept.
Not only was Kalan falling asleep in class, but he was falling asleep when he got home from school. Maybe he was just growing? What seemed too strange were the black circles that were appearing underneath his eyes. He looked like a character in a movie that was possessed by the Devil and needed an exorcism. It was scary! We jumped into the car and Kalan and I got in the backseat. He wouldn’t wear a seat belt because he was rocking back and forth because of the pain and holding his stomach. “Please! Please hurry!” He cried as our vehicle zoomed down the city streets. In truly “Kalan-like” fashion, he recognized the Taco Bell as we passed it and cried out, “Wait, do you think we can stop for a slushy?” I couldn’t help, but laugh. Kalan’s mind was constantly on food even when he was in tremendous pain.
I ignored his request as we turned toward the hospital and Mike pulled in front of the emergency room doors. I know I wasn’t very nice to the front desk woman, the triage nurse, or the emergency room staff, but call it mother’s intuition. I was panicking and I knew it. It wasn’t difficult to tell the hospital staff that had children and it took about 10 minutes to get back into a room. I paced the small space and kept looking out the door for the doctor to come. A paramedic came into the room and began to ask questions. I asked each one and eventually the doctor came in. One look at Kalan and he knew something was very off. Kalan couldn’t answer the doctor’s questions, was stumbling on his words, and was still rocking in pain. I explained my concerns about an appendicitis and his symptoms and the doctor agreed. Blood tests were ordered and everything was put into “rush mode”. FINALLY! I thought to myself.
What felt like an hour, which was probably only 20 minutes the doctor raced back into the room. “Your son has diabetes.” The doctor didn’t mince words. It just kind of flew out of his mouth. Someday, when I die…I am going to ask God to let me see the doctor’s view of Mike and my faces during this statement. I have never felt my mouth drop so wide open without any control over it. I am pretty sure my husband’s mouth dropped open as well. We were in absolute shock! “Is there anyone in your immediate family that has Type 1 Diabetes?” the doctor asked. “No, not at all! I have a cousin with it,” I gasped, hoping that would help. “No, definitely not what I am talking about. So, no one in the family has Type 1?” He asked again. In the next 4 days, we would be asked this question by a multitude of doctors and nurses and each one of them seemed shock by our answer, “No.”
When I figured out that Type 1 Diabetes was an autoimmune disorder, it made complete sense to me. I have Celiac Disease and so does Kalan. I also have hypothyroidism as does my husband and my oldest daughter. Since getting the diagnosis of Celiac Disease, I realized that that put our family at risk for other autoimmune disorders. I had to explain this to many of the doctors and nurses because surprisingly, they didn’t always understand the connection. I am definitely a Celiac that knows everything about their own disorder. I do the research on restaurants, I grill the cooks and waitresses, and when I can afford it, I am going to buy the machine that can tell whether or not the food has gluten or not.
“Your son is extremely sick and we don’t know if he is going to make it through this or not,” the doctor stated. “His pH is so off that we need to get him a brain scan to make sure his brain didn’t swell to the point where it cut off circulation. He is going to be in the hospital for awhile. Do you see these circles under his eyes? Those are from dehydration. The water going into him isn’t being used for what is body needs it for. We are going to get an IV in him as soon as possible. If we can’t get it into the arm, we are going to try for his feet.” I had been very strong up to this point, but asked to leave the room for a few minutes. I didn’t want Kalan to see me crying. When I reached the hall, I burst into tears. I began calling family and friends even though it was 1 A.M. in the morning, by now. I tried to explain to each of my family members what was happening, but it was too late at night for them to realize what was going on. Mike joined me in the hall, knowing that I wasn’t doing well and comforting me into his arms.
We reentered Kalan’s room to find a paramedic trying to find an adequate vein. She knew and I knew that each stick was going to be futile. I had worked in an emergency room department for enough hours as an EMT/paramedic to know this wasn’t going to happen very easily. 4-5 sticks later, the paramedic used an ultrasound underneath Kalan’s arm, almost into his armpit and slid the IV needle into place. I silently thanked God for helping this to happen and prayed for Kalan to make it through this. When they got him into stable, they moved him to the pediatric wing of the hospital and explained to us that they did not have a pediatric ICU. The staff explained to us that they knew the nursing staff in the pediatric unit knew exactly what they were doing and that they were given ICU-like protocol for our son.
They moved our son through the emergency room halls into the elevator and through more halls and floors. It was a maze and I wondered how the staff knew where they were going. The minute we arrived on the pediatric wing, the nursing staff was waiting. We could not have asked for a more caring, empathetic, knowledgeable, and amazing nursing staff that greeted us at the door. They settled Kalan right in like a grandmother would her beloved grandchildren. They whispered to him and nurtured him, telling him that everything was going to be okay. With the comfort they offered him, Mike and I began to breathe again knowing that he was in the best hands possible. The nurses knew that neither of us was going to leave for the night and prepared our beds alongside of his bed. Kalan still couldn’t make complete sentences and we watched with acute attention as the nurses came in and took his blood sugar and answered our questions. Kalan had been close to a blood sugar of 800 when he arrived at the hospital. I couldn’t tell you what he was at by the time that he arrived at his room in the pediatric wing. It was a blur.
In the next 4 days, we would be “trained” in everything Type 1 Diabetes including how to take a blood sugar, what strips were, how to run a blood sugar meter, how to use an insulin pen to inject insulin, how to count carbs, how to mathematically convert this to an insulin dosage, what to do if he had a low, and what to do if he had a high. We received backpacks from a national and state foundation for youth with diabetes that included a stuffed bear with injection points, children’s books about having diabetes, adult books about diabetes, leaflets, and pamphlets. It was the longest and shortest 4 days of our lives. After 4 days at the hospital, we would be expected to take our son home and care for his every need as a diabetic. I felt bad for my husband and daughter that did not have any medical background. I had lived with a Type 1 Diabetic for 6 years as my mother had married again after a failed marriage. He was a fragile diabetic with extremely dramatic lows that even in my 300 ambulance runs had never seen anything like it.
I was now going to have to raise a child with that horrible disease? I soon found out that a blood sugar of 60 meant extremely different things to different diabetics. It was difficult to figure out if my son was high or low because he acted basically the same as if his blood sugar was normal. It might take him dropping to 48-52 before he noticed any difference. This left our family in sheer panic. We didn’t have long to get him something to eat before he would completely refuse to eat. Mike and I began settling our alarm each night to every hour and a half to check Kalan’s blood sugar. If he had problems with lows or highs at night, I would stay up with him 24/7 to make sure he was okay. Luckily, Mike’s mother came to help and make meals while we tried to adapt to a whole new life of asking for blood glucose levels every 90 minutes.
Flash forward 2 years, not much is different than it was when we returned home from the hospital. The nursing staff did their best with preparing us for a life at home with a child diabetic, but there are so many things we had to learn on our own. The first fact we figured out after perusing the grocery store and looking at every label in the place was that there are little to no foods that have zero carbs. Meat and cheese were the only items my child could eat without it drastically changing his blood sugar. What made this even more difficult was that Kalan had to be gluten free because of his Celiac Disease. If you have ever looked at gluten free food, you will realize it is extremely expensive. We had 5 in the family that had to eat gluten free and now we were going to have to pay for insulin and diabetic supplies.
It became obvious very quickly that Kalan was going to cheat and sneak food that we didn’t know about. When we tested him every 90 minutes and found his blood sugar at 400, we would ask what he had eaten and his response was, “Nothing! I promise!” We felt terrible interrogating him about eating food, but we felt like we had no other option. At this point, my job for Western Governors University was falling by the wayside and there was great pressure from them for me to quit. I honestly couldn’t take the harassment and the constant phone calls from my supervisor to “be better than this” even though she had no idea what I was going through each day. I finally decided during a phone call to let it go. I remember after that phone call praying to God to help us financially through this situation. It only became more difficult.
When Mike and I found out that Kalan could get an insulin pump and that he wouldn’t have to wait 2 hours in-between meals, we jumped at the chance. We were shocked to find out we were going to have to fork out $8,000 to attain one. With the help of our family and friends and through a gofundme page, we were able to get a pump for our son. What we didn’t realize was how much we were going to have to pay per month for the insertion sets, the tubing, the insulin, and the containers that hold the insulin inside the pump. Mike and I have always been of the mentality that we could “find a way” financially if it were for the good of our children. To get through the 6 month period after our son’s diagnosis, we had to borrow about $10,000.00 to make ends meet and two years later, we are still paying that back. We had to sell our home and move into a trailer to be able to pay for everything that our son needed. I am still at home taking care of my son who I pulled from public school because they couldn’t take care of his Type 1 Diabetes and because he was getting death threats, but that is a whole other blog.
When times are tough and we don’t have any money, I remind myself that there are many families that are going through struggles. At least he isn’t in a wheelchair and doesn’t lack the ability to use the bathroom. We are still a functioning family unit that loves each other greatly and still laughs and smiles. We just have tremendous anxiety about the future and how we are going to pay for it all. I get so angry at this disease and how I can’t go out and have a full-time job and be productive, but than I remind myself that my son is alive and I need to be grateful. It is hard to hear about all the adventures that my sister and brothers are doing with their kids. There is no way we could afford the homes and adventures they get to go on.
It’s hard for me to even spend time with them because they want to go everywhere and do everything and all I want is to sleep without the fear of my son dying while I am “out” for a couple of hours. My son can drop 200 points on blood glucose levels within 45 minutes with no rationale or reasoning. My lack of alertness can be his end, which doesn’t sit too well with me. He doesn’t wake up during his lows or highs like other diabetics. Can you imagine being woken up in the middle of the night 3-4 times to get “fed” food to increase his blood sugar? I can’t stand the looks on my relative’s faces when they see Kalan and how much weight he has gained. They look at me like I am a horrible parent and I have to suck down the anger that I feel and not scream, “Hello?!? How skinny could you stay being fed 3-4 bowls of cereal a night? Assholes!”
If your family can’t understand the situation, who would? Diseases of childhood are particularly tough because they not only affect the child, but they also impact the family. I wish there was more support for this disease, financially and emotionally. My son is truly my hero. He takes his diabetes in stride and does almost everything that we ask of him. His poor little fingers have such tough calluses that he doesn’t even notice the needles that consistently poke his fingers. He has never cried about having Type 1 Diabetes. Kalan has just rolled with the punches and learns each day how to take care of his disease as much as he can without the help of others. I just continue to follow his every move, keeping him alive and wondering how a stay-at-home mom can fulfill her own dreams, someday. I have to believe that there is a reason for everything and that hopefully our own experience will help someone else out someday. I have worked too damn hard to keep this amazing young man alive and I believe he will change the world, for the good.
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