For one second

Easter Sunday 2013, dinner with Tres and Tina:

For a second I forgot. We talked about so many people getting sick and having the flu and for a second I forgot.

I actually said, “Yeah, we’ve been relatively luckily with Aislin only getting the flu in the fall.” It was the split second of quiet, the tilted heads and slightly raised eye brows that made me stop.

Then I remembered. Less than a month ago we were in CHOA getting a life changing diagnosis. But, for that one second it felt good. It felt like the old normal.

Three Weeks

It has been three weeks since D-day. I still have moments that feel almost surreal. I’ll be prepping a syringe with insulin or helping Blaine with an injection, and think, Is this real? Am I really giving my son a shot? A shot that his body needs to stay alive? Surely this is still just a dream and I will wake up soon.

But I don’t wake up. I count carbs, I keep lists, I package out individual snack bags, I pack his lunch along with a list for the school nurse documenting the carb count of his lunch. I go to work and while I’m working exchange an email or phone call with the school nurse at least one, two, or three times daily.

Today she called. After making breakfast and counting carbs we calculated he needed 4 units of insulin.  A part of me thought, No, just give him 3. But, I gave him 4.  I just spoke with the nurse, a little later than normal. Its sounds as if she and my son have had a busy day together.

She arrives at school at 9:30 am.  He was waiting on her. They immediately checked his BG. It was 53, which is too low. His class was on the way to PE. Not him, she kept him with her until his levels came back up to 91, then he went on to PE. He continued on through his day, with a few stops by the clinic after PE, before lunch and after. It seems after lunch when he needed more insulin to cover his carbs, there may have been a malfunction, or human error with the kwik pen. Shortly after the insulin he came back to the nurse to let her know he had a headache. He checked his levels and was in the high 200s. She asked him to wash his hands and check again. This time he was even higher, 324. That shouldn’t be after his insulin.

She called me to let me know the calculations. He needs 6 units, but she thinks she should only give him 3. He will finally be able to stay after school to practice for Academic Bowl today. She doesn’t want to give too much and have him go too low. I agree. She will give him 3.5 units and check him again at 3:25 pm before she leaves. I will pick him up from Academic Bowl practice at 4:30 pm.

And that is what can now be called a typical day for Blaine. Other children worry about homework, tests, classwork and peer relations. My son gets to worry about these things too, as well as his blood sugar, insulin, carb counts and whether he has headaches from being too high, or feels weak and shaky from being too low. He’s probably spent a good hour out of class today if you add up all his time in the nurse’s office. He now gets to worry about what he missed and his makeup work too. We have a 504 plan, and if needed I'm sure I could ask for accommodations regarding missed work. But, prior to diagnosis he was an all A student that rarely had to study. Now, who knows how this stress will impact his ability to sit in class and focus? Thank goodness he is gifted. He will be fine if we can manage his stress. This is one more thing he will overcome and cope with, but… wow.

I don’t even need to state the obvious: It’s not fair, he doesn’t deserve this. But, then again, life isn’t fair.

 

 

Friends

Friends that will bring you a bottle of wine with a straw, and listen to you talk about your child for hours :-) My sister was there too, but she took the picture.

First injection in stomach

17 days after diagnosis: Blaine's finally gained enough weight back to try an injection in his stomach. Never anticipated that this would be a new milestone for me to document!

Dear Diabetes

Dear Diabetes,

You gave him 10 years of a normal childhood. We had 10 years of freedom that we never understood and took for granted each and every day. We had 10 years of eating without calculating, 10 years of hopping in a car without making sure we had BG testing strips, a BG monitor, alcohol swabs, insulin, juice boxes, glucose tablets and emergency Glucagon pen in case of diabetic coma. We had 10 years of sleeping through the night without worries of what you will do to his body as he ages.

You will not define him.  We will handle you and overcome you. You will not steal his childhood.  We have been told there is no cure. For now that is true. I’ve seen the posters with the baby blue ribbon and the single drop of blood, symbolizing Type 1 Diabetes. The poster that reads: Waiting on a cure. Someone I love has Type 1 Diabetes.  We won’t wait for a cure. We will live every day. We will continue to live and not wait. You will not stop us from the same hopes and dreams we had before.

I expect great things from my child. I knew he was special the moment he was born and I held him for the first time. I still expect great things from him. I am his mother, I am supposed to protect him, but I was powerless to stop you, and that breaks my heart.

You will not make us weak. You will make us stronger as a family. His body will not be weak from you, but will be strong because of you. We will overcome you.

Two weeks

Two weeks. Two weeks have passed since our new lives have begun. Yesterday was Blaine’s 10^th  birthday. I’m thankful he had 10 years free from constant monitoring and insulin calculations and corrections. I still have moments where it hits me. My son has diabetes. He will deal with this the rest of his life. We were admitted into the hospital two weeks to the day, probably on the hour of his birth and received the Type 1 diagnosis. We stayed for three days before being sent home with a 100 page manual of important information to help us cope and care for him, and about 700$ worth of medications to last us through the first month.  Since the day of discharge, and leading up to his 10^th birthday, he has had no less than 88 finger pricks for blood glucose monitoring and 60 insulin shots.

He is still handling it amazingly. I’m doing better. I find it is crucial to only stay in the current moment and current day. I cannot think too far ahead.  When I see that he is happy, I feel happy. Maybe that’s the best I should hope for, for now. I

 have ventured out to the web to look up a few blogs, either written by adults with Type 1 or by mothers of Type 1. It is overwhelming. Posts on diabetes and illness, pumps versus insulin shots, diabetes and depression, treatment of highs and lows, DKA, additional complications from having diabetes.

I force myself to stay in the current moment, that’s the best we can do.

Happy 10th Birthday Blaine!

Cognitive Stopping as Coping Mechanism

I’m doing better today. Surprising, considering multiple factors: I took both the 2 am and 6 am shifts, we sprang forward for Daylight Savings, effectively losing an hour, and I’m writing reports from home most of the day. I didn’t sleep restfully last night, which may be a few weeks away still. But, I was able to employ a technique I’ve talked with others about: cognitive stopping.  Research  appears sketchy on whom this technique works for, but it’s helping me for now.

The details are fuzzy now. It was the middle of the night; I can’t recall the exact scenario that I kept turning over and over in my head. I only recall that it was about Blaine and whatever it was, it made me very sad.  Somehow I also remembered that I could control my thoughts. In the middle of the night I remembered that not all in my life is doom and gloom. I reminded myself that I could choose to think about something else. So that’s what I did. I let myself drift back to sleep while replaying in my mind Aislin’s basketball practice.

Practice has started for her travel team. I laid there remembering the focused look her eyes as she intently watched and listened to her coach. They must have ran the same drills 50 times, which made for a steady and constant stream of images for me to play back in my sleep. I watched her attempt her lay-ups on the 10 foot goal, until one after another they were all going in.  I don’t know why it took me 6 days to remember the cognitive stopping technique. My head feels less foggy. Maybe I’m coping better, maybe it’s just temporary. It could be that in an hour everything hits me again. I don’t know. All I know is to take it moment by moment, with the hope that it will get better.

It’s like everything we do now with Blaine is a new first: His first day back at school, his first track practice, our first afternoon being out running errands. I’m learning how to do everything again, just like a new mom. I am a new mom, a new mom to the life of T1.  Questions constantly pop up, like do I take his diabetes bag into Kroger with us? Or leave in the car?

Today his friend Zack called to see if Blaine could go play at his house. I can’t keep him glued to my side forever.  So we let him go. When Zack’s mom arrived to get him we checked his BG. It was 260, which is too high, so we corrected with insulin. I worried about giving him the amount that I did and thought maybe I should have given him less. It wasn’t until after he left that I thought about whether or not the boys would be going outside to play.  An hour later I sent Julia, Zack’s mom a text to check in on him. I asked for him to call me by 3 pm and let me know how he was.  It turns out that after the 7 units of insulin I gave him, plus the insulin he had for breakfast, he and Zack had gone outside to play for a while.

Blaine realized he didn’t feel good, and came in, telling Zack’s mom that he felt hot.  He checked his BG and it was 61. His range is 70-150 for now.  He was slightly low.  He knew what to do. He drank the juice box from his bag and had two glucose tablets.  By the time Zack’s dad dropped him back at our house he was in a great mood.

Another sigh of relief. We survived his first play-date away from home.  He knew what to do when he didn’t feel well, or felt low, in the language of diabetes. Everything was okay.  I just need to keep experiencing everything being okay and stop myself from the negative thoughts.

5 days since diagnosis

It’s been five days since our diagnosis, and I still can’t wrap my head around it. I can’t sleep. When I do sleep it’s not restful. And it’s not because I’m doing the 2 am BG checks, Brent is. I close my eyes and can’t go to sleep. The second I drift off I immediately begin dreaming of different numbers. Is he too high or too low? How do I treat it? I don’t have enough experience to draw on to make judgment calls. My short term memory is gone. I can’t make simple decisions like what to eat or wear, let alone decisions about how many units of insulin to give.

I’m irritable; I find I have little tolerance for anyone around me. I cry easily.  I have this overwhelming urge to sleep and then wake up and this all be just a bad dream.  Reality hits me at odd times. I was in a meeting with a family who had received a diagnosis of Autism for their adopted son nearly a year ago. We sat and talked about various strategies and how going through different stages with their son on the spectrum would be different than their experiences with the neurotypical child.  I was able to lose myself in talking about their child for about 10 minutes. Then, it hit me full force, like someone knocked the breath out of me by punching me in the stomach. “My son has diabetes. There is no cure. He will be dependent on insulin for the rest of his life, because his body will never produce insulin on its own.”

And that’s how it goes. He has a good BG level, I’m happy and feeling like I can handle things, he goes low, I panic. He goes high, I’m not sure what it means and doubt my decisions. I’m double checking my math, and then triple checking by having Brent check it for me.  I don’t want this new normal. I want my old life back.

I’m not responding to emails. I don’t want to schedule a girl’s night out with my closest friends, even though they check in on Blaine and ask if I want to get out. I don’t want to be away from him. I’m at basketball practice now with Aislin. Blaine had his first track practice this morning. He looked so precious. He wore a new lime green Puma shirt I had bought him a few weeks ago, one that I noticed looked bigger than it should have when he tried it on. This morning we measured his breakfast, counted carbs, packed a water bottle and bag of snacks, along with the now-standard bag of BG monitoring supplies.  He was ready to get to practice and looking forward to it. I was nervous. They told us before leaving the hospital that it would be like bringing home a newborn. At first we wouldn’t know what to do and we would doubt ourselves, but that it would get easier.

In my opinion, it’s more like bringing home a fragile newborn. One that was in the NICU and was only released after swallowing on its own and gaining enough weight. We are given knowledge and insulin, but not experience. That we will only get through time, trial and error, and living every day. Every parent is given the job of keeping their child alive and healthy. Now we are told we have a child with an autoimmune condition. A condition in which his body began attacking itself, and we are taxed with keeping him alive.

Its indescribable how that feels, the weight of it is crushing.

First Day Back to School

Its 9:56 am, my heart is beating out of my chest. I’m back at work, but it’s not work stress that’s making me have heart palpitations. This is Blaine’s first day back at school. My overwhelming feeling since yesterday was the persistent urge to just go to sleep and then wake up to find everything “back to normal” and not the “new normal”. But that isn’t going to happen.

 

So instead, I’m forced back into this state of hyper-vigilance. The school nurse just called. She saw Blaine for the first time this morning. He had a snack in class and his BG was high. We had already corrected it for the BG level at 6:30 am and for the carbs in his breakfast. She used a judgment call to correct for the snack only, then sent him off to PE with a juice box in case the insulin were to over correct and take his BG too low. She asked what I would have done.
 

I was like a deer in head lights. I told her, “I don’t know. I don’t know yet.” It’s like my once quick-firing brain is in slow motion. I’ve become neurotic with calculations and double checking and triple checking. Yesterday, while home with Blaine I didn’t administer a single dose of insulin without triple checking the math and then calling Brent to have him double check my work. I’ve lost all confidence in my abilities. I know I can do this, but I think my confidence is being blocked by my emotions, which seem to come and go. I just want it all to go back to normal. Desperately.

I don't want this new normal

Why can’t I go back to sleep and wake up and everything be back to normal?

Diabetes Boot Camp

We learned so much my head was spinning. These classes were like any other lecture I'd sat in before throughout numerous undergraduate and graduate school courses...except for, they weren't. A classroom, a table, other people, notebooks, and a lecturer. But, this time I couldn't scan the peer reviewed article 15 minutes before class to make it appear that I'd done the required reading. This time it couldn't depend on looking up the information later if I zoned out for a minute. This time, these classes, were the most important I'd taken. I had to learn about Blaine's condition, so that when we left the walls of the hospital we'd know how to care for our child. Blaine with his brilliant little mind was alert and taking everything in throughout the class. I tried to stay focused, and Brent sat next to me taking notes.

What did we learn? How to prep a syringe. How to give a shot. The role of the pancreas, what beta cells are, what insulin does. What carbs do. Math calculations for food ratios and correction ratios when blood sugar levels are too high. What to do in case of emergency. How sick days look different for kids with diabetes. What ketones are and how to check for them. How exercise impacts blood sugars, and more.

It will take me months to truly grasp all the information, but I know I will get there. We all will, because it's not an option. We have to.

Day 2

I just want to sleep. I want to sleep and wake up and everything be normal.  I sat in class today, where I was supposed to be learning about how to care for my son, but instead just wanted to cry. I looked at the two other families going through the class with us and wanted to cry for them. Their sweet girls, they didn’t deserve this either.

 

Blaine, on the other hand amazes me. I ask him each time if it hurts. He looks at me, hesitates a second then tells me that it doesn't. I know it hurts. But he tries to make me feel better by saying that it doesn't because he sees how sad it makes me. I hate this for him. I am beyond grateful that we live close enough to a children's hospital that can care for him without us having to travel. I'm grateful that we have supportive friends and family. I am grateful that even though we don't know what changes to expect, we have the resources needed to cope with this life change. I am grateful that I have Brent. I have a partner in this that takes over for me when I'm too tired to focus. While day 1 I felt like I was coping great, day 2 I started to fall apart. Brent took over and made the decisions, asked questions, and took notes while I sat in class with a blank stare, and tried to hold back tears each time I looked at Blaine, the other two girls or their mothers.

Day 1

Today it will take a good amount of makeup to cover the fact that I stood in the shower and cried for 10 minutes straight. Drained and broken is how I feel. My heart hurts for my child more than I’ve ever experienced. There is also no guarantee, now that the floodgates are open, that I won’t cry all day. It hit me at 6:15 this morning. The night shift nurse came in for the last time. She took Blaine’s blood pressure and then asked him which finger. He indicated his middle finger, then put his head down and quietly whispered “I hate this.” His blood sugar was back over 200. At 2:30 am I had the slightest moment of happiness and hope. When they checked his blood sugar then it was 114, in the normal range. A part of me thought: Thank goodness, we’re back to normal. Everything will be fine! In my near delusional state from lack of sleep I had forgotten that he had two shots before bed. One to counteract the carbs from his snack and another to serve as a long lasting background insulin. His pancreas is no longer doing its job. Which hit me full force this morning when I realized that because the insulin he received at 10:00 pm was wearing off, and his pancreas was no longer doing its job, his blood sugar was going back up. It was increasing like it will do for the rest of his life because his pancreas no longer works to move carbs through his body.

Yesterday Blaine was diagnosed with Type 1 diabetes. My coping words yesterday day were, “It is what it is, it will be what we make it”. They helped me get through yesterday. This morning, as I lay next to Blaine in the hospital bed, looking at his thin shoulders, and hearing the quiet resignation in his voice it hit me with such force that I had to run to the bathroom and turn on the shower. My words today that are repeating over and over in my head, “This sucks! Why my child? He is such a good kid, he doesn’t deserve this. It isn’t fair! It isn’t fair.”

Shortly after admission to the ER the endocrinologist met with us and told us quite simply, his diagnosis is confirmed, there is no cure, but the symptoms are manageable.  He went on to explain that there was nothing we could do to prevent this. It was something Blaine was born with and there was no way we could have known until now that he had it.  The doctor explained that most likely his pancreas was functioning at 85% as a baby or toddler and that with each year its functioning became less and less until we were finally to the point we are at now, where it is functioning at less than 10% and now placing a drain on his kidneys and other functions.

We knew coming back from Gainesville that there was a high probability that he would be diagnosed, but also some very strong hope that it would just be a middle ear infection or some virus. We really began noticing symptoms less than a week ago. February 28^th, a Thursday, Brent was at work when the school nurse called to say Blaine had a pretty bad headache. Brent convinced him to stay at school until noon and to call him back if his headache didn’t go away. His headache remained and Brent picked him up from school. When I got home from work that afternoon he seemed fine. He was in a good mood, playing basketball in the driveway.   That night we grilled out steaks and had a good bit of cookie cake for Brent’s birthday. The next day, Brent stayed home from work to enjoy some time off from work and to help get us ready to leave for a basketball game at UF.  For Blaine’s upcoming 10^th birthday I asked what he thought about going down to see the campus and watching a UF versus Alabama game.

Friday afternoon the school nurse called Brent again to say that Blaine had a headache. Lately he had seemed so tired, and had been asking for coffee. He was getting plenty of sleep at night and staying on top of his homework, but just seemed to drag a little lately, so we’d been letting him have what was left of the coffee, less than half a cup, in the mornings as it seemed to pick him up and help get him going. We began to think he was having caffeine withdrawals. Brent picked him up from school again.

Friday afternoon I had a meeting that went until about 4:30. It had been such a busy week that I hadn’t even packed up for our trip. It was 6:00 pm before we were able to get on the road. We dropped the dogs at Jennifer’s. We made a dinner stop at the drive-thru at Burger King. I can count on one hand the number of times we eat fast food in an entire year. Blaine was starving and ordered a Whooper, fries and chocolate milk shake. He ate all of it and an hour later complained of a hurt stomach, we assumed it was eating fast food, in a car, eating it too fast and having the dairy from the milkshake.  He requested to keep a bag in the back seat with him. We told him to loosen his seat belt.  Less than an hour later he vomited. 

At this point, Brent was frustrated and ready to turn the car around and go home.  Blaine begged to keep going to the game.  The car smelled like stomach acid. Aislin was complaining that she couldn’t breathe. I thought I’d be sick too. I tried to calm everyone down by stating that Blaine would likely feel better now and that we should keep going.  We stopped briefly at a gas station, and then continued on to Gainesville.  What was noticeable during the trip down was the fact that Blaine could not get enough to drink. We kept telling him to slow down with the water so that we wouldn’t throw up again. He was literally consuming water like his life depended on it. We now know that because his kidneys were furiously flushing away nutrients and water in his system, his brain was constantly sending him messages to drink more. He couldn’t get enough water.

Throughout the weekend the same pattern continued.  He’d drink a ton of liquid, retreat to the bathroom frequently and then get intense headaches.  He was so thirsty walking into the O’Connell center for the basketball game that he was in tears. Nearly 10 year-old boys don’t cry because they are thirsty, and certainly not Blaine. Past the age of three he rarely cried for anything, and definitely not because he wanted something to drink. I reassured him we’d get him something to drink as soon as we got in. Luckily there were no lines and I was able to immediately get him a bottle of water. 

We made it through the entire basketball game. He ate a hot dog and while lethargic, was smiling and watching the game each time that I glanced over at him. After the game, the plan was to walk around campus. Blaine complained of being cold. We convinced him it would be warmer in the sunshine. We started walking. We made it from the O’Connell center to Ben Hill Griffin stadium. He posed for some pictures, smiling and giving me the thumbs up. I kept thinking, he looks too thin.  We stopped to rest, then continued. We showed him the buildings where we took classes. Blaine said he didn’t think he could keep going.  We stopped and got a snack from a vending machine, with Blaine and I sitting to share a Kit-Kat bar, while Brent and Aislin shared some M&Ms.

We didn’t spend as much time on campus as we had anticipated and by 4:30 decided to call it quits and have an early dinner. I thought we needed take Blaine immediately to the Minute Clinic at CVS. Brent thought we should go ahead and eat before it got too crowded. I’m now glad that we decided not to go to the Minute Clinic. Had we gone, they most likely would have said he had a virus. At this point, I’m not sure we had put all the pieces together to give them the correct information.  Type 1 is so rare, 1 in 400, that I doubt they would have thought to look for it.  Instead we decided to have dinner at Outback.  Blaine ordered a steak and lobster tail. He seemed to feel better after eating.

That night I heard him get up and go to the restroom. Brent was right I thought, he is in there forever. Over a minute by my estimation, but then again, he has been drinking a ton of water.  The next morning I think both Brent and I knew something wasn’t right. We were both quiet on the way home. I was driving, and remember handing Brent my phone. I asked him to Google “excessive thirst, extreme headache and frequent urination.” The first thing to come up was Type 1 Diabetes.

We both thought, surely this is not it. Brent called my cousin Beth, a family practice physician. He didn’t tell her what we read on Google, but did tell her Blaine’s symptoms. She asked questions, he answered. I kept my eyes on the road and drove. Beth told Brent a few specific things to ask for in the morning. She suggested we have Blaine at the pediatrician’s office when it opened the next morning. I kept thinking, surely it is just a virus. Or, a middle ear infection as those can cause vomiting. That night neither Brent or I slept. I prayed all night that my son would be fine and the tests would come back normal.

That morning Blaine came walking down the stairs with sunken eyes. As he neared the bottom steps he fell. He slid down the last few steps and just sat there and cried. I wanted to cry too. Why was my healthy child looking so thin? Why was he falling down the steps? I came and sat next to him. I gently lifted his shirt to check his back. He had carpet burn, but otherwise seemed fine. I was so frustrated, and sad. For nearly two weeks he’d been asking me to tie his shoes in the morning. I thought it was odd, but I had just ordered him new shoes. Maybe these laces were different than the last, is what I thought. But, I knew they weren’t. I had order the exact same Reebox Flex shoes, just in the next size. I had also just ordered him new clothes, all in size 10 as he was about to turn 10. All of the new clothes just hung on him, they didn’t look right either.

Once the kids were ready I headed to work. We thought if Blaine was sick then I should at least get in half a day of work and then Brent could go in. I had just started the first of three meetings for the morning. Brent called just as we were starting to talk. I had my phone next to me and had already let everyone know that I was expecting a call.  I took his call and stepped away. I asked how the appointment went. What I didn’t expect was for Brent to tell me that the pediatrician did a quick blood test and then told Brent that he needed to go home, pack a bag and check into the ER within the next hour. I immediately left work to meet them at home.  Our suitcases were still on the floor from our weekend trip. I refreshed our bags. I remember once back in the car I called work to let them know that I’d be out for a few days. I can’t remember if I made the other calls or if Brent did. But, one of us called to make arrangements for Aislin to go home with Tres and Tina and for my sister to take care of our dogs. I’m sure one of us called all parents as well, but I don’t remember that either. I must have sent a text to Jackie and Robyn, because Robyn called me as I was driving to the hospital.

The one thing I do clearly remember is that the ER had several families there, and that we were the only people walking in with a rolling suitcase. I remember that we checked in and sat down. We were the last ones in and the first ones called back. It seemed as if they were waiting on Blaine. The pediatrician had called ahead. We had barely sat down before they called Blaine back. I began to feel nervous at that point.

I remember more questions, height and weight measurements, and numbing cream for the impeding IVs lines. Blaine, like me, hates needles. I believe I somehow gave him my needle-phobia. Prior to 3/4/13 I knew the only thing I knew about diabetes was that it involved insulin injections via needles. I didn’t really know the difference between Type 1 and Type 2 or why or how people got diabetes. But I did know that Blaine’s life was about to have a lot of needles in it…

The 10 minutes in the shower was the only time I allowed myself to feel sorry for our situation. I needed to stay focused. Starting at 9:30 am we would have class that went all day so that we could begin learning how to care for our child.