It's funny, but natural to find myself starting a blog... Writing has always been my way of personal therapy. It's just taken me this long to turn it into a blog... Three and a half years ago, June 9, 2004 to be exact, my life took a complete turn in a direction I had no idea about. Our son, John, then 7, was diagnosed with Juvenile Diabetes. I suppose I should begin my blog with my journal during those first few days...
June 15, 2004
The house is quiet now for the first time in a while. It’s my birthday, and as I sit and listen to the silence, I am forced to think about this year’s birthday wish. Honestly, I wish I could wake up and know the last 6 days were a horrible nightmare. Our youngest, John, has just been diagnosed with juvenile diabetes. John, 7, has always been a very easygoing and laidback child. I thought it was great to have such a smooth personality, but little did I know it would be what would carry him over one of the biggest hurdles of his life. About a week ago, I noticed he had an unquenchable thirst and was making lots of trips to the bathroom. John would come in from playing outside, all hot and sweaty with his critter cage in hand full of that day’s newly caught pets and he would run through the house announcing, “I’m going to the restroom!” And in the next minute, a shirtless, barefoot flash of tan boy would blow past me and pick up right where he had left off outside. He had no other symptoms. He ate well, slept well, and still had that sweet personality that would just go with the flow in all situations. My mom spent Tuesday afternoon with Margaret and John. They made a day of Chick-Fil-A and the new Harry Potter movie and when she brought them home, she mentioned that John spent most of the day looking for a bathroom. Mom began noticing his frequent trips and started counting back. He had gone 9 times in the few hours they were together. I decided to follow John to the bathroom to “check the flow”. I silently wished for a little dribble or slight burning, hoping for a sign of infection or something. Nothing. John slept with us that night so I could see how much he went during the night. Three times, and got up at 6:15 a.m. because he had begun to wet the bed and woke himself up. I knew then that things were very wrong. I made an appointment at the pediatrician’s office for 11:20 that morning. Next, I called my friend who’s a nurse and asked her to prepare me. In my mind, I knew these were signs of diabetes. There is no family history though, and other than bathroom trips, NOTHING was different. She suggested I hold off on his breakfast, and have his fasting blood sugar checked. She also suggested that Tony go with me. The minutes crept by and I liked it that way. I didn’t want to go to the office and hear anything. I wanted him to watch Scooby Doo cartoons and have a poptart and plan his summer day. Tony and I met for the appointment and I began to feel reassured as the nurse began to ask questions. Has he been feeling poorly? Has he thrown up lately? Has he lost weight? No, no, no. He laughed at the idea of going to the bathroom in a cup. We waited only a few minutes for the urine test to come back and the nurse told us that he wasn’t “spilling ketones” in his urine. John stepped on the scales and weighed a whopping 72 pounds, a whole 4 pounds more than his visit in December when he battled the flu. Usually kids with diabetes have marked weight loss. My heart was beginning to lighten as I started talking myself into thinking I was just a paranoid mother. The doctor ordered a blood test to check his sugars anyway, hoping to rule out diabetes. His fasting blood sugar came back at 239. A normal range would be anywhere from 80-150. All of a sudden, my face felt flushed and the doctor’s words sounded foreign, like she must have been talking to somebody else. Tony and I kept looking at each other, then at John and then shifting our eyes to the doctor and nurses again. Our questions started flowing and the whole world changed for our perfect little boy. I started thinking about how many changes we would expect him to make. How many challenges he would face… how different he seemed just one week ago. What we were hearing swirled above us like cartoon birdies once you’ve been hit on the head. I lost John in the room and zeroed in totally on the doctor and her words. Why? When? How? Tony and I couldn’t gather the strength to hold back small quiet tears of disappointment as we listened to our new reality. There was no way to protect John from this new monster he must battle every day for the rest of his life. There was no way for us to bear his burden or shelter him from the storm within his own body. In the meanwhile, John, quietly slipped off of the examining table and walked over to the trashcan and started dry heaving. My attention focused off of the news I had just begun to swallow and immediately to my little boy who was trying to throw-up. “John! What’s happening? Are you okay, Honey?” He looked up with those soft green eyes and said he was worried about us. About us! He wasn’t thinking of himself at all. He didn’t want us to be upset.
Within the next 30 minutes, the three of us would find ourselves answering more questions to more strangers about ourselves. We got checked into a very small hospital room facing the Shoney’s buffet, which I am assuming we will never revisit again. The walls had already begun to close around us and this hospital room made us feel more squeezed together. John began making promises to stop drinking so much water and stop going to the bathroom so much if we could just go home and play. The nurses came in, one after another to poke and prod at his healthy looking body. They took us to another room where they would draw blood from his arm. John had several “tattoos” on his arm and they laughed when his only request was they don’t mess them up when they got the blood out. He held us close to his brave body as unfamiliar nurses introduced the phenomenon of needles and a seven-year-old boy and John quickly had more shots in one afternoon than he had ever had in the previous seven years combined. John never cried. Not once. He never asked us to make all of this go away. He never said life wasn’t fair. He never questioned anything we would ask him to do.
It was extremely difficult to watch all of these new experiences approach us and know that our daily routine was going to change forever. The emotions that were becoming a part of me were beginning to take over. The stress and lack of sleep began to take their toll and John caught me crying. He stopped his activity and looked at me. “Mom,” he said, “Don’t be scared. They’re teaching you how to keep me well, not telling you I’m dying.” He wasn’t letting this disease conquer him. He held on to the ultimate truth. This is manageable, thank God, and we can handle it.
For the next three days, we would carefully select bland meals from a cafeteria suggestion list, trying our best to reach 70 carbs worth of a well-balanced meal a seven-year-old boy would like. The nurses learned quickly that our lean son had a mighty metabolism as he regularly asked for two entrées at mealtimes. (Several times I heard nurses whisper and laugh about checking him for a tapeworm while they had him in the hospital.)
Every couple of hours somebody would come check blood sugar levels with what John had begun to call the “stapler”. The dreaded stapler (finger pricker) would cause him more pain than the shots that he had begun to give himself. He got pricked before every meal and between every meal and before bed, and anytime in-between if somebody just wanted to check because they were suspicious. The shots were much more predictable, only borrowing a minute or two to draw up his insulin dose after each meal and before bed. He quickly realized that giving himself shots gave him some control of the situation. He got to decide where and how fast. John could choose from a range of areas on his slim frame that he could take the shot. Anywhere he could find a pinch of fat would suit. His favorite spot is in the tummy, which usually caused sneers or grimaces from on-lookers, which also peeked his enthusiasm.
Once John began getting the shots, the nursing staff and doctors encouraged us to let John give his family shots so we could all better understand what he was facing for the rest of his life. Somebody would come visit and John would quickly grab the saline bottle and a new syringe and say, “Hey! Let me give you one! I’m good at it! It hardly hurts at all!” People were having a hard time turning him down because how could they refuse one when he couldn’t refuse four every day, forever? Let me say, when your child approaches with a needle, the whole world sits in a different light. I was scared at first, but the words I had covered John with before his first shot came trickling back to my ears as John repeated them to me. “It won’t hurt long! I promise. Just hold your breath and don’t look…just a bee sting.”
Our last night in the hospital proved more stressful for me than the first. The staff was beginning to turn over some of the care giving to Tony and me, letting us draw up the insulin, check the sugars and what not. He would continue to be checked at mid-night, 3:00a.m., and 6:00 a.m. around the clock by their staff, but encouraged us to participate. The nurse came in at mid-night for the check and told us goodnight. His sugars were lower than they had been, but still in the normal range, so that was fine. By 1:30 a.m. I was so sleepy, but couldn’t drift off before another blood check. I just didn’t feel safe waiting until 3:00 a.m. I woke Tony up and he left his chair/cot/bed and helped me “staple” our sleeping boy’s finger. The number popped up… 46! I remembered his normal was 80-150. We called the nurse who rushed in with orange juice and all I could picture was the scene in Steel Magnolia’s where orange juice didn’t make any difference in the world. We tried hard to wake John, who was not unconscious at all, but just very tired and refusing orange juice because he thought he was dreaming. He kept his eyes closed and put the straw to his mouth, pulling the bitter drink up to his lips. He didn’t take it in. He didn’t swallow. I asked for Coke, promising it would be easier for him to drink, and the nurse said just to keep trying with the juice. I tore off the lid and held the cup to his mouth, bribing him with a dollar to get it down in three gulps. The bribe worked and within 15 minutes, his sugars were back in the normal range and he had to wake totally up to eat Teddy Grahams and peanut butter as midnight snack. I didn’t sleep the rest of the night and just knew they wouldn’t send us home now. Certainly not!
Boy, was I wrong! Morning came and so did the doctors on their rounds. We were encouraged to test our wings and they gave us discharge papers. We were actually preparing to go home and become a human pancreas for our son for the rest of his life. They thought we were ready. I did not.
Since then, John has been poked, stapled, dosed and fed by us alone. I have measured insulin, counted carbs, encouraged or discouraged physical activity depending on his sugar levels, and have learned what it is like to set an alarm on my child’s wrist watch. With a “beep-beep-beep”, he comes running from his busy day, still with a critter cage in his hand and his newly caught pet for the day, and instead of announcing he is heading to the restroom, that same tan little fella finds me and says, “I’m beeping! What do I need?”
We are all learning how to manage a new lifestyle. We are all learning how lucky we are to have our health. We are all learning that we can’t be as spontaneous as we once were, but we are better planners. We are all learning that God allowed this to happen to our family because he was proud of our strength and he knew we could handle it. Life is in perspective for us. Life is manageable. Life is hard, but still good. It’s not always fair, but then again, the fair is in September, and when it rolls into town this year, we will have a better handle on this disease, and hopefully, John can have some cotton candy with just a little more insulin that night.
We ask that you keep us in your prayers and that you never take your own health for granted. One day, there will be a cure for this, and who knows… I’ve always said John is my scientist! He may be the one to find it!
The days are coming and going at a regular pace now, it seems. We are settling into our new routine. Diabetes is like getting new Sunday shoes when you’re little. They are a part of life. You have to have them. You wear them, and although they fit, they’re just not quite what you want on your feet all day. It beats going barefoot in the dead of winter, I suppose. These new shoes of ours are beginning to fit a little better, however, they still pinch our toes in the wrong places at times.
John isn’t talking about diabetes much yet. He’s taking it all in. I have noticed him looking at packages or the sides of cereal boxes to see if he can figure out what we keep looking for. He eats what we ask him to eat, when we ask him to eat. Thankfully, John has never been a child that craves sweets. He is my meat and potatoes youngin’. He would choose a sweet potato over a candy bar any day. We are lucky that way. We haven’t had to really cut out any sweets for him, as he didn’t prefer them in the first place. One day at the end of school last year, we were driving through town and saw an ice cream truck. Now, my children had never had the pleasure of scrambling for coins or lost dollars in the lint collector of the dryer when they heard that magical sound of cheerful music approaching our neighborhood. The ice cream trucks in our town never seem to find their way to our house. So, being the sentimental mother I am, I tried to recreate a childhood memory of mine by pulling that ice cream truck guy over and giving him directions to our neighborhood. I didn’t let the kids get anything off his truck that day. That’s just not how it’s done. The truck is supposed to come to you…not you chase him down. Anyway, I told him that anytime between 2:00 and 4:00 twice a week would be to his benefit and ours. I knew the other moms in our neighborhood would support my efforts to rekindle memories from yesteryear. We drove home and waited. After a couple weeks, just long enough for me to have forgotten about my conversation with this traveling entrepreneur, in the quite distance I heard the sweet tinkling chimes of familiar nursery rhyme melodies. The thrills of our new experience rushed toward us as the kids realized what was about to happen! They ran for coins and I ran for my camera! My barefoot little kids approached the ice cream truck like they were walking into the castle at Disney World for the first time. They were so excited the day had finally arrived. Each child studied the picture menu inside the truck’s big open window to decide which treat they would choose for themselves. Margaret had a hard time deciding between all the different choices, and finally decided on trying something new. She gave her order and was off to sit on the curb and indulge in her new delight. John stood on tippy-toes at the window and gave a snaggle-tooth grin before ordering a diet coke! This was months before diabetes ever ventured his way. He’s just not interested in the usually sweet-tooth centered pleasures that most kids are, thank goodness!
I thought by now that John would have a reaction to this new lifestyle of ours. I thought he would either be tired of the shots now that they are a mundane part of our daily ritual and that they don’t draw much attention to him anymore. I thought he would have hit his wall of rejection, but not yet. He hasn’t asked us why this has happened at all. I thought I would hear reactions in his nightly prayers. He hasn’t vocally discussed this with God that I am aware of. He sends the usual thanks for his family and friends, blessing for his critters and toys, and signals to God to look over certain situations like the weather or our plans for the weekend, but has not voiced anything about diabetes yet at all. I don’t think he is mad at God in the least for allowing this disease to invade his body. I don’t think he has given it a thought that maybe he didn’t deserve it. I suppose he is dealing with it in his own way. He will vent his feelings in time, and by then, most of mine will have absorbed and I will be able to help him figure this whole thing out.
Margaret is settling in to things nicely. At first, the spotlight on John took her by surprise. He didn’t act any differently once he was diagnosed than he did before, but he sure was drawing lots more attention all of a sudden. We noticed some feelings of “big deal” being expressed. Although she has usually chosen to mother John in most situations, they do still appreciate the typical brother/sister relationship. Of course they pick and pester each other. I would worry if they didn’t. Last week in the pool, Margaret and John were horsing around. Margaret got the upper hand on John and he called “time-out” and followed it up by telling her he didn’t feel good. Assuming he was using his new disease to slip away from her grasps, she called his bluff and kept right on with the water war, splashing and dunking her way to the top of the hierarchy they had determined at the beginning of their antics. He insisted she give him a break and she quickly realized he wasn’t joking. Margaret called for me to get the “tester” and check him. I did and he was approaching one of his first “low blood sugars” since we had been home from the hospital. We handled things in our own 911 fashion! Smarties to the rescue! John quickly devoured a half roll of Smarties as a worried sister nervously dripped wet bathing suit all over the kitchen floor. Within fifteen minutes, John was feeling better and Margaret realized her little brother has just become a little more delicate. She beamed with pride as she asked me, “Did I do the right thing to come tell you?” He will certainly benefit by having her look out for him! She will certainly benefit by doing so. It’s good for her nurturing spirit to do that for him. It makes her feel needed, which satisfies a very important part of her.
It has been a few weeks and we have conquered more hurdles. Life comes and goes for us in baby steps still. When John was first diagnosed, we lived hour by hour, literally. We spent much of our time thinking about numbers and how we can manage to balance them together. We are now living day by day. We have been to the beach, which was the cheapest vacation ever! We ate in more than before. Feeding John in restaurants proves to challenge us unless they offer a nutrition guide including carbs for their menu items. It is just much safer for us to read the side panel of foods we can prepare for meals. We control portions and the selections are already made for John. It breaks my heart to take him out to eat and he has to narrow down his choices because of his diet restrictions.
We have also started another school year. That was a big surrender for me, emotionally. Sometimes a teacher spends more time with her students than parents do during the school year. For the first time since he was diagnosed, John will be away from me for the majority of his day. We have been blessed to have two wonderful, gifted teachers for John this year. They are exceptional in their profession. When school started this year, I wrote specific guidelines and directions about John and his needs for them to follow. They learned all about how to control blood sugars, test ranges, treat highs and lows, and all the small details that have etched their way into our normal routine. They became his caregivers and surrogate parents while he is with them. All along, they continued to do the jobs they were hired for…teaching John, as well as 20 plus fellow students their math and English lessons, science and social studies, and the countless other things a teacher does for students every day. They balanced a whole classroom and added the requirements of a special circumstanced child and haven’t missed a beat. I spend lots of days watching the clock wondering how his blood sugars were going, was he high or low, and was this causing him to be a burden for anybody else? I would gladly carry this burden for him, but since I can’t, I will help him manage it to the best of my ability. Now, I’m asking two more people to step in and help manage it and keep up with everything else they already had on their own personal plates. I dealt with guilt from this, and prayed every night that John’s sugars would stay balanced during school hours and only complicate itself when Tony and I were around. Of course, John had erratic sugar control at school for a while. John would have his blood tests all during the day and would have snacks as needed to help keep things “normal” but nothing is normal about a new onset diabetic’s blood sugar. He visited the nurse every afternoon when he was done with lunch so she could oversee his injections of insulin that would hopefully carry him through another afternoon until he was home and I could take over my shift of the routine again.
September is a favorite time of year for us. John and Margaret absolutely love the fair, and since John’s diagnosis, I have dreaded the thoughts of all the cotton candy, corn dogs and deep-fried candy bars like you can’t imagine. I knew we would have to make an appearance, but didn’t want to struggle with the temptations it brought to town this year. In the past, a splurge of cotton candy as we were leaving the gates, meant that you had to be extra carefully about sticky hand on the car seats. Now, cotton candy had a whole different set of rules with us. How many carbs are there in a bag of fluffed sugar? How do I deny Margaret such a treat without making John feel responsible? How can I let her delight in it, knowing John absolutely cannot indulge? I was secretly dreading the whole ordeal. We decided to visit the fair on a Sunday afternoon. This was different for us as the kids usually liked to go on the night the schools are offered free tickets and we meet so many of their friends there. However, they agreed Sunday was a great idea! We had lunch after church, part of my plan so we didn’t have to consider the carb count of a foot long State Fair corndog. We entered the gates with fully tummies and lots of excitement! John and Margaret ran to get wristbands to guarantee plenty of rides for the day, and I reached for Tony’s hand as we walked behind them. Teamwork is the only way I survive now. It’s funny to think how much fun the fair used to be for me, and now my feelings were completely struggling within me. John and Margaret dashed from ride to ride with huge smiles and completely unaware that I had other things lurking in my mind. We watched agriculture shows, petted animals, rode rides and battled crowds all afternoon. Finally, after a day of fun at the fair, it was time to go. We kept the kids so busy that we somehow dodged the pleas for junk food that sent its smells hovering over us since we entered the gates hours ago. As we were approaching the exit, something caught John’s eye. He glanced up at me and said, “But wait Mom! I know something I want! We didn’t get anything to eat yet!” I thought we were in the clear, but all of a sudden, everything I was dreading came to reality. I felt myself stand up straight determined that I would figure out and total any carbs he would want. I would not let diabetes stop him from enjoying the pleasure the fair brings once a year! Doggone diabetes! “Look Mom! That’s what I want!” John pointed past the cotton candy booth, past the candied apples, and past the funnel cakes. John was headed straight for a new booth to the fair this year! He set his sites and taste buds directly on the booth that sold alligator on a stick! I looked with amazement! John had chosen an all-protein, no carb treat! He had pulled one over on diabetes! He found a snack at the Cabarrus County Fair that would not require insulin, shots or even a blood test! He was delighted as he smacked his lips all the way to the car proudly announcing to the rest of us that alligator tastes a little like chicken! I looked at Tony and we smiled. We did it. We faced another challenge with diabetes and made it! We put John to bed that night with a normal blood sugar and plenty of good dreams ahead about a fun day at the fair!
We decided early on in John’s diagnosis that we would consider getting him an insulin pump as soon as possible. A pump would mean there would be no more traditional shots every day for him. John was taking 4 shots every day to send insulin to his body since he didn’t make insulin anymore. The shots were not as much painful as they were just a pain to deal with. We had to carry needles, alcohol swabs, vials of insulin and a specific time schedule that kept us crazy. A pump would offer better control and lots more flexibility in schedule for us all. An insulin pump is a small computer, about the size of a cell phone, which he wears on his belt. It has a tube hooked to it that delivers insulin through a catheter in his abdomen. The catheter site is changed every two to three days. Tony and I learned how to insert the catheter and how to program the pump to deliver the right doses of insulin all day long. John still has to have his blood sugar checked throughout the day, but gets his insulin through the pump now, not shots. This also gives him the ability to eat many more food choices and any time during the day since we can send the insulin right then. Before, he only got insulin at meals, so an afternoon snack wasn’t always okay for him. Until we get the doses regulated in his pump correctly, he must have blood checks before every meal, two hours after every meal, at bedtime, midnight, 3AM and sometimes 5AM. This should settle out to regular checks before meals and bedtime, but we are looking at this testing schedule to last 6-8 weeks. It’s almost like having a newborn again. Luckily, John sleeps through the blood tests during the wee hours of the night.
John had not talked much about having diabetes until recently. He seemed to take things in stride and followed schedules and procedures trusting us to manage things for him. One afternoon, we were in the car together, just the two of us. He wasn’t particularly talkative until he sat up and asked, “Mom, why do you think I have diabetes?” I knew this question would find it’s way to me one day, so I had rehearsed the answer I would give hundreds of times in my own thoughts. “Well,” I began, “your pancreas cannot make insulin anymore for your body to use. We don’t know why it stopped, and it’s nothing you did to cause it.” “No, Mom.” I was interrupted. “Why to I have diabetes?” he asked me again. A whole other question in itself! He wanted to know why this disease has chosen him. Why was a cute, sweet, little boy minding his own business one summer afternoon challenged to carry this burden for the rest of his life? Why him? I started to gather my answer, and he stopped me before I could offer an explanation. He said, “I think I know, but I’m not sure if I’m right. Let me tell you what I think, and you tell me if I’m right or not… I think God loans us these bodies to use while we are here on earth, and he needed somebody he could really trust with this one! I think it’s good God trusts me this much!” I swallowed hard past the lump in my throat and smiled as tears swelled in my eyes. I looked in my rear-view mirror at my seven-year-old hero who was examining his dotted fingertips where we had begged them to give up drops of blood for the past 4 months. He smiled back at me. He was proud of his diabetes. He didn’t mind it at all. It gave him a chance to appreciate the confidence God had in him.
Halloween is approaching this weekend. Another one of those dreaded events that I don’t know exactly how to handle until it arrives. Much like the fair, I wish it would come and go quickly. We have talked about what John would like to do this year. Does he want to dress up and collect candy he can’t possibly enjoy? In years past, the kids enjoy their treats as they bounce from house to house collecting and comparing what they’ve managed to gather. This year, John will not have the freedom to blindly choose something from his bucket again and again. Should we just go out of town, maybe to Tweetsie, and not go trick or treating this year? Would John feel responsible if we did that, and Margaret didn’t get to go trick or treating either? Should we let John trick or treat as usual, then offer to buy his candy from him and take him on a shopping spree at Target? What do we do? In our search for the perfect answer, John offered up his suggestion. He has his heart set on being his favorite Carolina Panther, Jake Delhomme. John wants to collect candy as usual. He wants to save a few pieces and figure the carbs for them. Then, he wants to take the rest of the candy to the hospital to the kids that didn’t get to go trick or treating this year. I think we have a plan!
There are so many blessings that this new life has brought our family. We have learned to focus on what is real and what matters most in life. We have learned to prioritize problems and put life in the true perspective it deserves. We have learned that our marriage is strong and steady, and that we believe in us. There’s not anything strong enough to take our courage and love for each other away. We have learned that parenting doesn’t come with an instruction book, but if you ask the right questions to the right people, the answers are there. And until the answers come, hold on tight and fake it! God’s in control and that suits us fine!
Well, that's where my journal stopped, until now... 3 1/2 years later and a whole new disease has been added... we just found out that John drew the diabetes AND epilepsy card. John has recently begun having grand mal seizures, completely unrelated to his diabetes. John is epileptic too. Another turn in this road we call life...