World Diabetes Day

Today is World Diabetes Day, and it’s National Diabetes Month, and I wonder what that means for us personally. When I went to the grocery store today there was a sign on at the register that you could donate money to the JDRF with your order. It’s everywhere right now. Bu it’s not like I ever forget though that I have a child with diabetes. 

I remembered yesterday when I jabbed my finger with his needle after giving him a shot in the arm and then instinctively putting my finger in my mouth and finding out the hard way that insulin does not taste good.

I remembered a few weeks ago when True broke his collar bone and suddenly could not give himself his injections without help as his arm was in a sling to allow the collar bone to heal correctly.

I remember every night when Todd’s phone alarm goes off to remind us to give him his Lantus (long-acting insulin) since one night we both got busy and forgot and it was unfortunately the night before going to an endocrinology appointment and we both felt like stupid parents. 

I remember every day when he comes home from school and the first thing I do is ask him about his day, and the second thing I do is remind him to check his blood sugar. 

I remember every time my cell phone rings, worried that it’s about True, that something is wrong with True.

I remember every day when I sit down at my computer and read my Google news feed for type one diabetes and I read about the newest form of insulin or a pancreas transplant or about the man who died of ketoacidosis because his insulin pump malfunctioned. 

I remember every single time I leave the house with True as we must pack along a glucose monitor, his insulin pen, some 15 carb snacks to treat low blood sugars and his glucagon shot for an emergency low blood sugar situation. 

I remember at every birthday party we go to because we have to try to guess how many carbs are in the slice of cake that True is about to eat and hoping we guess pretty close so we can give him the accurate amount of insulin. 

I remember at every single meal because every single meal includes blood sugar testing and a shot of insulin. Every single time. 

Basically, I never forget that True has diabetes. It is such an active part of our everyday life. And I wish I could say I’m not still worrying about it, but I am. I wonder when I’ll stop, or if I’ll stop. It doesn’t matter how many people tell me about how well their diabetic children or friends or relatives are doing. There is always someone there to tell me how their friend or relative died or faced amputations or blindness and then I read about the death rates and it just scares me. I think it will always scare me. I figure I’m in control of his diabetes care until he is at least 18. For now I will manage it the best I can and feed him the best I can and then he will go off to college and I can only hope that he will take good care of himself. 

For now, I still worry on a day to day basis. If he comes home and his blood sugar is low (as happens quite often) I wonder why. If his blood sugar is low in the evening, Todd will often get up in the middle of the night to check it again to make sure he is okay. 

It’s been exactly two months now since diagnosis and I guess you could say we have sort of normalized diabetes care in our life, but I wonder how normal it is to have to cut your skin and inject yourself at least 5 times a day?  True doesn’t complain. We thought Halloween might be an issue but he managed the candy well, having just one after school and having the rest with meals so that he was covered insulin-wise. And on occasion he’d take an extra shot to have candy. We had no problems with blood sugars and the candy season. It all went well. He doesn’t seem to mind other than occasionally voicing that “diabetes sucks!” and as always, I just agree with him and we move on. 

As we approach Thanksgiving I am both thankful for his health, and resentful that he has to put up with this. I’m also wondering how the hell we will guess at the carbs for a Thanksgiving dinner. Anyone know how many carbs are in pumpkin pie?! I’ll know by next Thursday! Everything is complicated now. A peanut butter and jelly sandwich is no longer just a pb&j, it’s a carefully measured and balanced food item that I know the exact carbohydrate content of. I have a food scale that measures everything. True requested chips for a treat today and since I was at the store I bought some and I had to weigh out those chips to make sure he didn’t go over his allotted “free” 15 grams of carbs snack. It’s always somewhat complicated. I can’t ever just throw dinner on the table anymore. There is always carb counting and insulin calculating to do. 

So it may be World Diabetes Day – but for us, every day is Diabetes Day.

One Month

It’s been one month and three days since True’s diagnosis. It’s funny because Todd and True say that they feel like it’s been much longer and that it feels like we’ve been dealing with diabetes forever. To me it still feels like yesterday. I’m still not comfortable with it. It still scares me. It still confuses me. It still worries me. The day will be going by as usual and then suddenly True will say he doesn’t feel well – he might feel dizzy or headachy. I’ll tell him to check his blood sugar and it’s dropped to 62. For no reason. It’s just dropped. I quickly give him some juice or a sugary snack to bring his blood sugar back up and then in a few minutes he feels relatively okay again. But there is no warning for these little episodes. It just happens, out of the clear blue. That leaves me disconcerted. What if he drops really low at night and we don’t know? I shudder to think of what could happen. Todd is really good about checking his blood sugar in the middle of the night if we’ve noticed he’s been running low on a certain day but that doesn’t give us 24/7 reassurance. 

There are these little devices called CGMs – Continuous Glucose Monitors that stay on the person all the time and alerts the user of high and low blood sugars and I will definitely ask about getting one at our next endo clinic appointment, but they are very expensive and IF insurance even approves them there is still a lot of high co-pays, so I hear. But that reassurance, while imperfect, might be nice. I don’t know how True would feel wearing a device on his body all the time, but it might make his life easier as well. 

Easier. That’s not really a word we use very often. Nothing is really easy with diabetes. Everything has to be so pre-planned. Yesterday True went to a friend’s house after school. He called and asked if he could stay for dinner – they were ordering pizza. I said yes, and drove over all his supplies – glucose meter, insulin pen and needles, emergency snacks. He called me at 5:30 and said he checked his blood sugar and it was only 73 and they didn’t have dinner ready yet. I had him eat one of his emergency snacks. He usually eats at 5pm. It did not surprise me that his blood sugar was dropping at 5:30. I cannot control what time other people eat. He called again at 6:20, dinner was finally ready. I had to look up the nutrition information for the pizza place they ordered from and try to figure out the amount of carbs (it’s the carbs that matter, NOT the sugar as many people think) and in two slices of pizza and one bread stick. It was a huge amount of carbs and it needed a high dose of insulin. I figured out his dose and told True and he injected himself and went and ate dinner. I got a text 20 minutes later that he wanted “one more tiny bit of breadstick.” Previously in our lives that wouldn’t have been a problem. But he couldn’t have one more breadstick, because he’d dosed for a certain amount of carbs and more carbs would throw off his carefully calculated blood sugar level. I had no way of knowing what the carb amount was for a “tiny bit of breadstick was” so I had to tell him no. He was frustrated that he couldn’t just have a damn little of piece of bread. So was I – but right now it’s just complicated. 

That’s again where technology comes in. If he had an insulin pump, he probably could have had that tiny bit of bread. But now it’s just too complicated. And we are told that a pump, if we can afford it and get insurance approval for it, is a year off. The endo clinic said maybe by his diagnosis anniversary. That’s eleven months away. So for now, we do it the old fashioned way with calculators and needles. It’s only been one short month. One little month. A lifetime to True. Mere seconds to me, still bumbling to do everything right.

Last night I was tucking True into bed and he said, “I hate diabetes.” I never know what to say or do when he says that. I just said, “I know. I do too.” Is that the right answer? Is that supportive or the opposite of supportive? Some say we are made stronger by life’s challenges and that we learn from them. I don’t really agree. This is just one big pain the ass for a sweet little boy to have to go through. It complicates life immensely. We endure the challenges because we have to. We are strong – but because we have to be. To have to endure endless finger pokes and injections takes tremendous strength and True complains so rarely. One kind person at temple told me the other night that he is a little hero. He kind of is. At least to me he is. Any kid that has to deal with a disease is, and he does it with such grace and dignity. So much more than I. I am still calling Todd for reassurance at times with certain insulin doses. I don’t yet have the confidence that Todd has. Todd handles the morning and lunch insulin doses and I handle the afternoon and dinner and we share the evening shot depending just on who is around to give True his nighttime shot (the only one he needs help with as it’s a different insulin, not in the pen, and it goes in his hip.) 

This seems like an insane way to live sometimes. For the year 2012 it seems like a not very modern approach to a very old disease. I wonder if there will be a cure in this life time. I read an blog post yesterday about little research there is for diabetes compared to breast cancer. It read:

In 2012, according to the National Institutes of Health, 39,920 women and men died from breast cancer. In 2007 (the latest year for which statistics are available) 231,404 women and men died from diabetes, according to the Centers for Disease Control and Prevention.

According to Marie Claire magazine in 2011 “an estimated $6 billion is raised every year in the name of breast cancer. And the money keeps pouring in.”

By contrast, in 2010, according to diabeteshealth.com, “$150 million [was] earmarked for research specifically on type 1 diabetes” by the federal government’s National Institutes of Diabetes and Digestive and Kidney Diseases. The Juvenile Diabetes Research Foundation, meanwhile, raised $1.4 billion for research. But, oh wait, that’s the total amount of money raised since the JDRF was founded in 1970.

Why so little money for diabetes? It’s just not trendy. I’m glad breast cancer gets so much money, I just wish the disease True has could get as much money. It scares me that so many people die from this disease and that compared to other diseases, there is so little research money going towards a cure. Yes, insulin is a god send. But it’s still an archaic treatment when my baby boy has to poke himself a dozen times a day. I know a pump would help, but that’s not a cure either. I want a real cure. Not just management. I hope I live to see that for my boy. 

It’s only been a month and I miss our carefree life. I miss baking cookies for my boy. I know I still could, but not without doing a hell of a lot of math and then him having to take a shot to be able to have more than one. I miss buying little treats for him in the store that he can have after school as a surprise. I miss just sitting down to dinner and not having to spend 5-10 minutes figuring out carbs and insulin doses. I miss just going out to dinner anywhere we want and not being limited to places that have posted nutritional information with carb content somewhere online or otherwise. I miss the days when food was just food and not a mathematical experience. Everything is so complicated now. I can’t believe we’ve survived a whole month of this. I wonder if I will ever get used to it. 

I suppose I will. I suppose one day I will gain confidence and security in what I’m doing. But I wonder if I’ll ever stop worrying. 

What really helps is the amazing support from family and friends. Everyone’s patience and encouragement and understanding has been so helpful. Tag’s friend Desiree made a great poster board for True that says, “Stay Strong True” that was really special. True was really touched as was I. In this month even though it’s still complicated, things have somewhat normalized. We’ve established routines and True is just used to it. True and I have been going on evening walks each day which has been nice. We talk about life and rarely does diabetes come into the discussion anymore. Life goes on – just in a more complicated way. We’ve survived the first month. We’ll keep on surviving. 

What I don't like to see!!! It always comes out of nowhere... 

Poster by Desiree.

True and Willoughby out for our regular evening walks.

First Days

Honesty, the first days at home with True were kind of scary. At least for me. There we were with needles and syringes and a bottle of insulin, a couple glucose meters and test strips and we a folder full of information and we were expected after just 3 days of education to be able to care for a diabetic child on our own. We felt both ready and unready and also a little bit terrified all at the same time. The impact of the situation had not yet hit us and I think we were running on autopilot those first days. We got through the weekend and on the first day back to school we skipped Rosh Hashanah services and instead I met with the school nurse to deliver True’s school plan that the doctor’s sent us home with and the nurse knew more than I did. I felt like an idiot. She knew when he should test and when they should call me and honestly, I didn’t even really know those things with real confidence. 

Somehow we got through it all though. We got through the first weeks of testing in the middle of the night (which Todd took care of since he is a lighter sleeper than I). We got through the meeting with the school counselor, nurse and assistant principal to make a 504 health plan for True. We got through the first three hour diabetes education class. And then came our first clinic day. 

Our appointment was at 9:00am. We valet parked at U of M Children’s Hospital which is so much more convenient. We found the endocrinology clinic and filled out some paperwork. The wait wasn’t too long and the waiting space was large and cheerful with big windows. Then we were ushered into a typical clinic looking room. Unfortunately, for the first time in his illness Todd and I had both forgotten to give True his Lantus (the long acting insulin) the night before so when they checked his blood glucose it was high, making us both feel like bad parents. We had to admit we forgot it, and we truly looked like idiots. I don’t know how we all forgot – it was the first time (and the last) it happened. After the nurse checked his blood sugar we met with the dietitian who tried to talk True into expanding his diet. Nice try. I’ve been trying for years. She gave him a handout about Halloween and talked to him about nutrition. After seeing her we saw the children’s diabetes social worker. We all talked to her about how things were going. Then we saw one of the endocrinology fellows. She checked over our blood glucose logs and did a physical. It surprised me that she checked his feet already. It felt rather daunting of risks to come. She said they just like to get in the habit of checking at an early age but that they don’t expect to see any problems for many years to come, but still, it was smart to keep an eye on the feet. My baby’s sweet little feet. I cringed in fear of anything ever being wrong with them. 

She left and came back with the attending who talked to us for about 10 minutes and by the time the doctors left we had been in the clinic for a good two hours and twenty minutes. We went from there to seek out the big cafeteria in the main hospital so we made the long trek through the hospital to find it. We got the guys lunch and then found a Starbucks for me where I could warm up with a chai latte and then Todd found us a lounge area to kill time in before our second 3-hour diabetes class started. By the time the class was over we had spent 7.5 hours in the hospital. We were relieved when it was over as God willing, that’s our last time at the hospital until our next clinic appointment until December! It feels like a huge relief to be free of all the meetings and appointments. 

Now it’s been over three weeks since True’s diagnosis and we feel pretty comfortable managing his illness. I’ll admit that both True and I finally did have a breakdown day where we both lost it. Mine was after an appointment I had. I came home, made a pot of coffee, and just sat here at my laptop, writing and crying for hours. The diagnosis just seemed so unfair and so harsh. He’s only eleven. Why not me, instead of him? Why a boy so young? Why my boy? Why the rest of his life? Where is the cure? This is forever! It just all finally caught up to me and I just needed to cry it out. I halted my tears before the boys came home. Interestingly, True had a similar meltdown that night, with the same frustrations. He was sick of the restrictions. Sick of the shots and blood checks. He just wanted life to go back to the way it was. His meltdown was so painful to me. What could I say other than he was right, it was so unfair, and I wish I could take it away from him.

I worry all the time now. I worry he’ll get sick. I worry his blood sugar will go too low. I worry about complications. I worry about his future. I worry about his day-to-day life. I worry that I’m doing things wrong. I worry because I don’t get the math and have to depend on the excel program that Todd gave me to do the math for me. I worry. I worry. I worry. For the past three weeks diabetes has basically consumed me. I live it. I dream it. I have nightmares about it. I dream he is unconscious and seizing and I cannot find his lifesaving injection of glucagon. It’s as if diabetes has invaded my brain and taken over. I read books and blogs and try to fill my brain with information, as if somehow that will shield us from anything bad happening. If I just know more about it I can protect my child. I wish it were that simple, but for now I feel this great need to arm myself with knowledge. I want to understand this, and why this happened. But really, I’ll never truly know why, will I? 

For now we are doing okay. As okay as we are going to get for now. True has adjusted well. He checks his blood glucose like a pro and he’s graduated from syringes to an insulin pen which he likes much better and it makes dosing insulin much easier. He’s not limited on his carbs anymore now that we have a carb insulin ratio and correction factor. We just have to put his carbs into that mathematical equation and adjust his insulin accordingly. He even managed to go camping overnight with his trusty pen in hand. We still have bumps in the road – like me forgetting to pack a needle with his insulin pen when he went out to dinner this weekend – but it’s all part of the learning curve I suppose. And that’s what we are doing right now – learning as best we can. 

Hanging out at Children's Hospital

Waiting for the car outside the hospital

Fancy new insulin pen

Hospital Days

September 13-16th 

I couldn’t sleep that first night in the hospital. The chair that opened up into a magical bed was surprisingly comfortable but I couldn’t fall asleep. My head was buzzing with anticipation of what would happen the next day. True was sleeping soundly, or as soundly as one can sleep with an IV hooked up to one’s arm, and having a nurse come in and poke your finger to check your blood sugar multiple times, and waking to use the bathroom multiple times. I barely would fall into a light doze when the nurse would come in and I would startle into an alarmed state of alertness thinking something was wrong and she would smile and say, “It’s just me” as I jolted upright. I’d smile and nod and she would say, “You poor thing, you wake up every time I come in the room.” I would say, “That’s okay,” as I wasn’t really sleeping anyway. My head was too full of worry for sleep. At 5am some light started to enter the big window. I climbed from my chair-bed and gazed out and realized it was raining. Such a grey, bland morning. I also realized that we had a beautiful view of the river running through Ann Arbor that we hadn’t been able to see in the dark of night. I stretched out and waiting for the sun, that wouldn’t really show itself. 

While True slept I decided it was a good time to sneak out of the room and try that coffee from the nutrition station room that the host had so kindly shown me. I walked down the brightly lit hall. It was eerily quiet. I went in and there was thankfully a fresh pot. I poured myself a stryrofoam cup full. It was pretty awful coffee, but it was warm, and fresh and thus welcome to my tastebuds on a dark, damp morning. I went back to room 11 to wait for Todd and wait for our very active day to start. 

At 6am the lab tech came to do a blood draw, which woke True up. He couldn’t fall back to sleep after that. I helped him up and helped him to the bathroom. I was so relieved when Todd finally got there at 8:00, grateful for company. I had Todd bring me my coffee tumbler from home and filled that sucker up, prepared for a full day. We ordered True breakfast. We were now on a regime of 75 grams of carbs and a set dose of insulin. We had to calculate out just how much he could eat, and actually we had to give him a bit more to eat then he usually has. He had a nice breakfast of pancakes with butter, no syrup, just like he likes it and a side of bacon and some chocolate milk. He said the food was “amazing”. To this day he will say that was the best part of the hospital. Go figure. 

The dietitian team was the first group of people we met – they were there bright and early at 9am. Three of them! A dietitian and two students. They gave us an hour long talk on reading nutrition labels and counting carbs. None of it was news to us and poor True was bored senseless. All he wanted to do was turn back on the television. I could hardly get him to pay attention. They gave us a big folder full of information, a booklet on food nutrition info and then a book on fast food nutrition info so that we can count carbs while eating out. True was relieved when they were finally gone, and admittedly, we were a bit too. Perhaps some people don’t know how to read nutrition labels or count carbs, but we aren’t those people. 

True had a little time to relax, but not much. Next came the children’s diabetes social worker. She was very helpful. She explained a lot to us and told us how things would work with school and talked to us about insurance issues and emotional issues and how the clinic worked and she was just really helpful. We all instantly liked her. She talked to us for about an hour and then it was time for lunch and another round of blood sugar testing and more insulin.

After that the endocrinology doctors came in to meet us. They taught us about what diabetes were and how insulin worked. They talked to us for about a half hour or so and they were actually very helpful but they came around lunch time and all True wanted to do was eat. 

The day was busy, with many blood sugar checks, insulin injections, doctor visits (residents, attendings, etc.) and the dietitians. We also started learning to give True injections and he started learning to give them to himself. We started practicing on a nectarine, and I was actually the first one to give True a shot and it was easier than I thought. True never winced or complained the whole time about the pain except for saying that the blood sugar testing did hurt a little. There was one moment when Todd was gone at the cafeteria that True had a slight meltdown and was in tears saying he was sick of the pokes and shots and he didn’t want to do it anymore. I didn’t know what to say except that I understood. At that moment the nurse came in to give him his insulin. I gave him a hug, told him we’d get through this. He wiped away his tears, took the needle, and injected himself right in his belly. And that was the end of his tears.

We were also busy fielding phone calls from family and friends and the school and even our Rabbis. We were grateful for all the support. In the evening Todd went home and got Tag and brought him back to visit. The boys played around with the gaming system until about 9:30 and then left for the night. This time I wanted True to get some sleep and get to bed at a decent hour. There was no way I was letting him stay up late again and I was exhausted.

By 11:00 we shut everything down and I turned that magical chair into a bed again, put the sheets on it and changed into a hoodie and crawled into bed and this time, I fell almost instantly into sleep and stayed that way until nearly 6am when I heard the nurse come in. I sat up and she said hello and I told her I couldn’t believe I slept this time. She said she was so glad I did, and she told me that True didn’t even wake up when she tested his blood sugar. We were both exhausted. I let True sleep, and this time there was no lab tech to wake him up. The endocrinologist said she’d be back early so I asked Todd to be back at 7:30 so I patiently waited for him. I once again filled my tumbler full of that awful but suitable coffee and waited for another busy day to start. 

We saw the resident early and she said if we got True set on learning to do his own injections and blood sugar testing we could go home that day. We were given a “Bag of Hope” from the JDRF with a glucose monitor, a video, a book about diabetes, a carb counting book and tons of literature about diabetes and a teddy bear (named Rufus!) that all kids with diabetes get and we got a huge bag from the pharmacy with all the starter supplies we’d need. The nurse helped us practice so we’d be ready to be on our own. True even practiced giving an injection into his Dad! By this third day we were sick of the hospital and it was a beautiful Saturday and we were all tired and ready to go home so we definitely wanted to prove ourselves and get out of there. We met with the endocrinologists again and that went well. We made sure we knew what we were doing, and we saw all the doctors and True’s labs were all good so by late Saturday afternoon we were given the go-ahead to get out of there. Grandpa and Grandma came to visit True around discharge time which was great as they were a welcome distraction while he was getting his IV out and while Todd and I were busy getting the lengthy discharge instructions. 

We left with not only our own big bags but now a backpack full of supplies and two grocery size bags full of diabetic supplies. Monitors, test strips, keytone strips, alcohol wipes, syringes/needles and two kinds of insulin. 

Three days after walking into the hospital, confused and frightened, we walked out, confused and frightened. We were certainly afraid of the task that lay ahead. For three days we had medical staff watching over us making sure that True’s blood sugar was stable and making sure he was okay, and now it was all up to us. The endocrinologist was going to be calling us the next day to check on us, and we had an appointment in the clinic in two weeks, and we were scheduled for two three-hour diabetes education classes one in each of the next two weeks. And the nurse practitioner would be calling us every day until we got True’s “carb ratio” and “correction factor” at the clinic appointment. So we weren’t totally abandoned. We had emergency numbers to call in case there were any problems. During the long hospital days I had read the 145 page “First Book of Understanding Diabetes” that was in our free backpack so I had a beginning grasp of what we were doing and the doctors and nurses had prepared us well. Still, it was scary. 

But we were as ready – or at least as ready as we were going to be. Now came the real challenge. We were on our own. 

  Sleepy Boy

True's Room

Room Decor

Rainy View 

Practicing Injections on Dad