First Week Back- Success!

The kids had their first days back at school. I now have a 3^rd and 5^th grader. We had a very smooth first week, despite having no kitchen and having to use all paper products! I just keep reminding myself that it is temporary…


Blaine -5th grade, Aislin- 3rd grade

I am working out of two elementary schools this year which is going to be great. One of my schools I’ve had for several years now and the other I had last year. Last school year I had three elementary schools and it was hectic to say the least, especially when in March Blaine was diagnosed.

This year I have two schools and I was able to pick up where I left off in May. I’m feeling very organized (at school, not home: no kitchen!) and ready to tackle this school year.

Aislin has Blaine’s 3^rd grade teacher, which she and I were both thrilled about, and Blaine seems to really like all three of his teachers this year. There is a new school nurse who has been awesome. She was a pediatric nurse prior and her communication with us has been excellent. The fact that she was so willing to jump on BlueLoop through www.mycareconnect.com was a hint that she would be on top of things.

Aislin’s cheer practice started this week and Blaine had his first tennis clinic. We are getting a feel for the rhythm this school year will bring. I’m hoping it’s a good one!

I'd choose to live

Blaine is our resident history buff.  He has loved learning about historical facts for as long as I can remember. A lot of history can be fairly violent in my opinion, however, it is not unusual for Blaine to read a book on Viking torture devices before going to bed. He is now reading the Hunger Game series for the third time (I read them first before I agreed to let him read them). Yes, they are violent, but they have opened the way for discussions of what living in a totalitarian government system would be like, leading us to conversations of what life may be like in places like North Korea. Later I’m sure it will lead to conversations about human rights.

When Blaine was four years old, my aunt gave him a dream catcher to hang in his room. It’s been hanging on his mirror for six years now. Coincidence or not, he hasn’t had a nightmare that he can remember since.  Maybe that’s why he can read such disturbing books before bed. On the other hand, Aislin would be traumatized by reading about a dog being temporarily separated from its family and would insist on sleeping in my bed all night. She will have to be 18 before she can read the Hunger Games, if ever!

The other day, out of the blue, Blaine asked an interesting question.

 

Blaine: “Mom, if you knew, before birth that you would die a horrible death, would you still choose to be born?”

Me: “Wow, I have no idea. What would you choose?”

Blaine: “I’d choose to be born anyway, even if I died a horrendous death.”

Me: “Well, that’s a pretty optimistic view point from a pessimist!”

Blaine: “Yeah, I know.”

I don’t know why he thought of that question, but I thought his answer was interesting. He’d choose to live anyway. 

Sometimes I think about friends and people that have been in my life that died before their time. For one year I worked and a speech and language pathologist on a preschool assessment team. For one year we had lunch together nearly every day. We talked about our families; we laughed together and shared the stress of being a working mother with children and a life outside of work. At the end of that school year she was in a fatal car wreck. She and her youngest son died in that wreck, while her husband and oldest son lived. There is not a day that I don’t think of her. If I’d known I’d only have one year to get to know her and enjoy her presence, I’d choose to spend that time with her, all over again. None of us know how long we have, but we can chose how we focus our energy on the time that we do have.

Hearing Blaine say he’d chose to live anyway makes me so proud. It comforts me on the days that I still want to scream, shout or sit down and cry. It wills me to keep going. I pray he will keep this veiwpoint in the years ahead. It scares me when I hear other parents talk about diabetes-burnout, but for now, all we can do is choose to climb the mountain and live each day.

End of a Honeymoon

This may possibly be the end of the honey moon phase.

I must say using www.mycareconnect.com has been amazing. These moms are brilliant! They saw the need to be in the loop about their daughters health needs and made a tool to do just that. Then they decided to share this tool, free of charge, for others to use for their benefit. This year Blaine’s school nurse is also linked in to this tool. She, Brent and I can input information each time Blaine checks his BG, has carbs or insulin. We can add notes for one another to see and his doctors can see the information as soon as it is added. We use this tool daily! I have the app on my iphone and Blaine has it on his ipod (although he has not used it yet). We are able to communicate with his doctors and make adjustments to food and correction ratios as needed without calling or waiting for our every 3 month endocrinologist appointment.

This tool also provides very nice graphs and charts, like the above. This bar graph shows the average daily total of Blaine’s fast acting insulin (Humalog) and slow acting insulin (Lantus) by week. Jumping from an average of 14 units of fast acting daily to 35 may just indicate that his pancreas is no longer dumping its own insulin into the mix! We’ve seen numbers like 317 (three times the normal limit of BG) to 37 (1/3 of the normal BG) in the same day. Definitely some adjusting of food ratios and corrections factors is going on in our house! All you can do is actively monitor and problem solve. There are no vacations from diabetes, that’s for sure. I am very appreciative of these innovative mothers who have made our daily management a bit more bearable.

Climbing the Mountain, Each Day

What is it like to live with diabetes? When we were first told that Blaine had diabetes I thought foremost that I was glad it wasn’t cancer.  Secondly, I thought that I would need to get over my needle phobia quickly. Then lastly, I thought that it would be as simple as doing a few shots a day.

While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.

Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.

Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.

I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me.  While we climbed I’d see other kids Blaine’s age skip, jog or run past us.  They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.

But I knew what would be on the other side.

I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.

While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.

I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.

These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.

To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.

Thankful

I'm thankful that some days are just normal days. Diabetes is always on our minds. How can it not be when constant blood glucose monitoring, carb counting and insulin ratios are required?

But, some days, when the numbers stay within range, just feel like normal days.

 

 

It has been a dreary, rainy three weeks, but today, the sun came back out.

 

 

 So we took advantage and loaded the pups up with their new life vests and took them out on the boat.

 

 

The kids swam. The pups snoozed in the sun.

 

And I took in this precious family time and enjoyed each and every minute of it.

The Blasted Numbers Again!

I had a pity party for myself yesterday. I don’t know if my house is too quiet after having family in town, or if I’m missing the structure of work, or if I’m sleep deprived, or stressed about an upcoming kitchen remodel, but the numbers really got to me yesterday.

I’ll not give you the whole day, just the range we experienced.

It started with a high of 355 corrected to a scary low of 40.

The average range is 70-150 for Blaine. That means he was nearly twice as high as he should have been and nearly twice as low. That low took forever for him to come up from too. Two juice boxes and 4 glucose tablets later he had only come up to 57.

I wanted to scream, or cry, or just go back to sleep and wake up to our old normal. I should be way past wishing for the old normal.

Other kids his age are off at all kinds of camps this summer. Guess how many Blaine has done? Zero. None. Not one single camp.

How am I supposed to send him off to even a half day camp with numbers like that?

Next week he will do a three day mini- basketball camp. I plan to sit in the lobby. In contrast, his younger sister is doing three weeks of camps in a row. What am I doing while she’s away? Definitely not worrying. I’m taking advantage of that time to run errands, or run the neighborhood…with Blaine, because for now he needs to be with me.

Please let me look back on this one day as the "Remember your 1st summer with diabetes? Look at you now!" Please let that happen.

Walkie Talkies

Who knew that walkie talkies may just be a solution for allowing both Blaine and I to sleep a little better at night?

The kids had bought some at Target the other day. I complained to them that we already had some, they were just lost somewhere in the basement. But, it was their own money and they wanted another set. Now, I’m so glad we have them.

This Friday the kids and I went bowling with some friends, plus our cousin Hugh, who was in town for the week. As we were finishing our last few frames Brent called. He had already gone to the gym at his office and was on his way home. He asked about the evening plans.

I suggested we take the boat out for dinner, so that’s just what we did. We had our neighbor Ben for the evening as well as Hugh, his sister, Emily, and Aislin. I ordered pizzas and Brent grabbed some cookies for dessert, bottled water and ice. I have the carb count for Pizza Hut memorized, and we counted carbs on the cookies. Yes, I hated it again, like I do every time, that unlike the other boys Blaine couldn’t just grab a handful of cookies. He had to know how many he was going to eat. I let him set the pace, how many he was going to eat, was how many I gave the other kids. Besides, nobody needs to sit there and eat double and triple the serving size (like I often do).

We tubed and swam. We watched the sun go down. We felt grateful. It was a perfect night.  On the way back, after the swimming and tubing, the kids were hungry again and wanted some more cookies. It was dark, we didn’t check Blaine’s BG, but I also didn’t want to tell him no to cookies. I’m not going to let diabetes steal his childhood. Having cookies with friends after a day of boating seems like part of his childhood, I didn’t want to deny him that. So, he had two cookies, 25 carbs, not quite a unit of insulin for him. We didn’t correct.

Once home we checked his BG, we knew the numbers would be off since he had recently eaten, but wanted to make sure he was above 100 before bed. At 10 pm he was 200. We didn’t correct, just gave his nightly Lantus.

They boys wanted to sleep in the basement.  That makes it much harder for me get up and check on him in the middle of the night like I sometime do, but again, I’m not going to let diabetes steal his childhood. Having a sleep over in the basement with his cousin and best friend is part of his childhood.  I gave him his walkie talkie and kept one with me. At 12:15 am I radioed down. The boys were still awake. I told them lights out immediately and that I’d be down in 5 minutes to check. Of course, I fell asleep and didn’t check. I woke from a nightmare which I can no longer recall. I went down to check on Blaine. I saw that he was still breathing, and all boys were sleeping probably around 2 am.

I got back in my bed. I was just drifting back to sleep. My walkie talkie beeps. “Mom, I feel low.” That singular phrase can send a rush of adrenaline through me at any time. I immediately sprang from bed, geo Blaine’s kit from downstairs, and then rushed to the basement with it. We checked. He was 81. Not low, but maybe he felt himself dropping, which he sometimes says makes him feel low. He had a juice and went back to sleep.

Every night since, we have both slept with a walkie talkie on our night stand. It has eased both of our anxiety.  On his way to bed last night, Blaine asked if Brent or I would bring his diabetes bag up. He said he sleeps better knowing it is nearby.

At the T1 brunch last week I asked the other moms about lows throughout the night and how they handle them. One mom told me she brought her four year old back into the bed with them, and they now co-sleep. The other mothers told me they don’t sleep. Out of the four moms with school aged kids there, I was the only one sending mine off to school. The other three moms had decided to homeschool.

I can’t do that. I know Blaine would love to be homeschooled. But, it’s not for me. I need my career and I need him to be independent of me, or at least not with me all the time. I didn’t ask about their schooling philosophies and didn’t ask if they had homeschooled prior to diagnoses. Although one mother offered that they had schooled at home prior. All these things are reminders that this is a life changer.

Our old life died on 3/3/13 and the new one started on 3/4/13. My old dreams for him didn’t die. I want him to leave me one day and go off to school. I want him to experience living somewhere new and finding his own way. I want him to be independent of me. We will just have to make conscious choices every day to make that happen. Little things for now, like walkie talkies on the night stand seem to be a step in the right direction.

This is a Honeymoon? A day in our life during this phase.

When children (or adults) are diagnosed with Type 1 they will sometimes experience what is known as a honeymoon phase. Once Blaine began receiving insulin via injections, his pancreas remembered “oh, I have some insulin too”. Blaine was diagnosed before he was in DKA or in an “emergency” situation such as coma or seizing. So, I had assumed that maybe he did have a few insulin producing beta cells left that his body had not yet destroyed (type 1= autoimmune condition). If only there were a way to get to his beta cells and clone them!...?

Although, this brings back a memory, so I digress. In college I was in an honors biology class with 12 other students. We were replicating DNA. It was a whole semester worth of work in the labs. I was the ONLY one who failed to have my DNA replicate. It seems I treat science like I treat my baking. Who needs to measure? Seriously, with the DNA we were working with mirco-measurements. Would it really matter if I was .001 mm off? The answer, apparently, was yes. And the answer to whether sugar cookies will rise without baking powder is no, as my children like to point out every Christmas since the year I didn’t use any because it wasn’t on hand.

Back to the honeymoon. Probably a month after Blaine began receiving exogenous insulin (insulin outside his body via injection) we noticed that he needed less and less. His food ratios were corrected from 1 unit per 15 carbs to 1 unit per 45 carbs. That has since been readjusted to 1unit: 30 carbs. We also noticed that anytime we had to do a correcting does (use the formula BG-100/correction factor) he tended to drop quickly.

The past few days have been full on hyperglycemic and hypoglycemic days. Because Blaine was in the 200’s the other morning at 8am, I dutifully woke him at 8 am yesterday to check and make sure this wasn’t a trend.

Yesterday 6/27/13:

8:15 am- 121 (Good number! You can go back to sleep!)

10:00 am- Kids wake up. Aislin wants to play restaurant. She puts on her pink art smock with pockets. She had a notepad to take Blaine’s order. When I come back down stairs I see a carb fest in progress. Mini-wheats, toast, fruit…. Blaine asks Aislin if she put 21 mini-wheat biscuits in his bowl. She says no. They start all over with a new bowl, as the first was piled high with an undetermined amount and was now soggy with milk. He’s eating away, happy to have his sister serve him. I ask about insulin.

11:20 am- Blaine guesstimated 100 carbs, and did 3 units on his own. I’m glad to see him take imitative so I let him do it on his own. He tells me he got a vein and won’t stop bleeding. It’s a nano-needle. He won’t bleed out. I tell him he’s fine, never thinking about the fact that maybe not all the insulin got in him.

12 pm- He leaves to go play at Ben’s next door.

1:55 pm- He comes home to check his blood sugar. While he is supposed to be washing his hands he instead has his head turned sideways inhaling water from the sink. Polydipsia. This was a word we learned in diabetes boot camp. It means frequent or excessive thirst and is a sign of hyperglycemia.  I braced for a high number. He checks.

436!!! That can’t be right. I immediately pull out another strip while he still has blood on his finger. We check again.

448.

448 is the highest we have seen!! What went wrong?! I remembered what other bloggers had written. Don’t get hung up on the number, it just tells you what to do next. I take a deep breath.

I ask Blaine what he thinks happened (very calmly, as if we were watching a movie and I wanted his thoughts on the plot). He says maybe too much insulin leaked out with the kwik pen.

We do a correcting dose (448-100/80= 4.225). We give him 4 units. I know that this will likely drop him, so I tell him to be aware of an impending low.

3:04- 158, one hour later he has quickly come back to the normal range. We are now at the pool and kids are playing in the water.

3:29- The blasted ice cream truck comes by. The kids buy the overpriced sugary treat with their own money. I’m impressed that Blaine got an ice cream bar with only 14 carbs. For now this is a “free snack for him”.

Kids eat and then go off to swim.

3:43 pm- Blaine does the low stagger from the pool onto the chair next to me. He tells me he feels low. He sits. I wait for him to check his blood. 54. Yikes, we’ve been seeing these 50s every day it seems. I tell him to drink his juice. He sits. He tells me he can’t. Yes, he was feeling so low and he dropped so quickly that he was sitting there in a daze. I quickly get the juice ready and give it to him. About 5 minutes later he’s ready to jump back in the pool. I have him take a glucose tablet as well.

4:11 pm- Boys are tired of swimming and want to go back to the house. I tell them that’s okay as long as Blaine’s numbers are fine. He checks- 81. They take one walkie talkie and I keep one with me. Once home they decide that want to ride bikes.

This is where it gets tricky. Prior to 3/4/13 we would have encouraged Blaine to do just this. Put on a helmet and ride his bike with his friend. Everything is different now with the new normal. I decide that with the walkie talkies I can be in communication, and with Ben there with Blaine he could let me know if something were to happen. It’s called letting go, all over again.

The boys ride bikes. They radio in to tell me they are headed up by my cousin Tres’ house. I say okay. A few minutes later I panic. I can’t get them on the walkie talkies. I fear that they have decided to down this wooded trail that leads to the lake. I try not to panic. I text Ben’s mom to see if maybe they were back at Ben’s. I radio them, over and over. Nothing. What do I do? Grab Aislin from the pool, soaking wet, jump in the car and go to the trail? They know not to do something like that without asking!

Finally, a whole 5 minutes of torture later, I hear Ben’s voice on the walkie talkie. They are headed back home. Sure enough, I see Blaine and Ben, plus our cousin Hugh coming up the hill on bikes by the pool. I breathe a sigh of relief.

The boys go down the basement to play xbox. Aislin and I come home.  She busies herself playing restaurant again with the pink art smock, but this time with three customers. Another carb fest. I walk into the breakfast room and see toast, with cinnamon sugar, graham crackers, and banana with peanut butter. Blaine’s happily sitting with the other boys eating away. Did he check his BG before eating? No. Do we know the carb count? He thinks so.

6:11 pm- Blaine believes he has had 55 carbs so we do 2 units of insulin. What a drag, the other boys are now playing laser tag in the dark basement while Blaine has to go through the steps involved in doing his calculations and insulin. Even though I’m right there helping him, these are just some the minor bumps reminding us that his days are slightly different than his peers.

7:00 pm- The kids are still off playing. We’re out of good dinner options as we didn’t make it to the store. It’s turkey bacon and eggs for dinner or delivery. I order delivery.

8:00 pm- we eat. Blaine is a few bites into his steak and cheese sub. I ask if he checked his BG before eating. No. We are flying in the dark again. He says he feels normal…We correct for the sub with 2 units. I know we will need to check him before bed, but the numbers will likely be slightly elevated because it won’t have been two hours.

9:21- He’s 258, but the insulin hasn’t completely done its job yet. I do his 11 unites of Lantus (long-lasting insulin) and I head to bed.

10 pm- I tell him to sleep tight. Definitely above100 tonight so I’m not worried about him going low.

I'm not sure how different our days will look once his pancreas completely stops producing any insulin. I went to a Type 1 brunch this week and the other mom's assured me that it will actually be easier once he leaves the honeymoon phase. I asked them, then why is it considered a honeymoon? I thought honeymoon was supposed to imply something good. Seems more like chaos to me. I'll do a day in our life 6 months from now for comparison's sake.

Battle with a Bug

This morning Blaine woke up earlier than normal, before 8 am, so we checked his BG.

273. What?! That's too high for the morning.

I looked at his log last night. He was 111 before bed. He had done what I like to refer the “low stagger” up from the basement around 9 pm. He’d been playing xbox with his cousin Hugh after dinner.  He threw himself into the kitchen island where I was standing, almost collapsing, and stated "I feel low".

He's consistent with the low stagger so he really didn't even need to tell me he felt low. I already knew. We checked his BG. It was 51. Yes, he was definitely low. He had a juice box and two glucose tablets. I knew with a number that low we’d be checking again before bed. He needs to be at 100 prior to going to sleep.

One of my original biggest fears was him dropping too low while he slept, not being able to get to us to let us know, and then slipping off into a diabetic coma during the night, and me not being able to wake him in the morning.

We checked again 30 minutes after the juice. He was up to 111. I gave him the long lasting nightly insulin and we headed to bed. I reassured him that he’d be fine as he slept. After our advanced diabetes class he is now aware of the same risk factors I already knew. I had hoped to shield him from some of these things a bit longer. I emphatically told him that I was not worried at all, stated that he was 111 which was perfect for bedtime and told him to sleep tight and that I’d see him in the morning.

So, imagine my shock with him being 273 this morning. A few thoughts began running through my head: is he always that high around 8 am? He’s been sleeping in until 10 am most mornings. It could be that he is spiking every morning and we never knew. Now I need to check him the next few mornings at 8 am to confirm or disconfirm that hypothesis.

Turns out Blaine had another hypothesis. He told me that while taking a shower this morning he had a battle with a bug.

Blaine: I had a battle with a bug this morning.

Me: You had a battle with a bug?

Blaine: Yes. I had a battle with a bug just now, in the shower.

Me: I see. You think that raised your blood sugar?

Blaine: Well... (He's looking off, thinking back on the battle.) It was pretty intense.

Those stupid centipedes. I’m called once a day to kill a bug during the summer. I guess he tried to tackle killing his own bugs today. We've found that adrenaline will raise his BG at times.

Then he returned to eating his 21 mini-wheat’s and cup of milk (FYI-58 carbs). We used his current correction calculation (BG-100/80) plus carb ratio (1unit:30 grams of carbs). So he had 4 units (273-100/80 + 2 units for food).

I don’t want my son to have a pump.

It’s not that I don’t want him to have a pump and the freedom it brings. I don’t want him to have to need a pump. It makes me sad that one of the things he wants in life is a pump. When cleaning out his book bag this week I found a sheet with goals for 2013. He wrote “get a pump”. His body needs an artificial part to do the job his pancreas is failing to do.

Why?! Why him?! Why any child?

At the end of the school year I was walking past the conference room at one of my schools. I saw a teacher in there and for the first time noticed that she was wearing a pump. I stopped to ask her about it. She told me that T1 diabetes was her 40^th birthday gift. I told her my 10 year old had T1. She went on to tell me how tough it is and how her stomach looks so bruised from the infusion sites. I wanted to tell her to shut up. Didn’t she realize she had 40 years of life free from all of the cumbersomeness of diabetes? My son got 10 years. He got 10 years of a normal life. I know that in that moment she was only thinking of herself and not that fact that she was talking to the mother of a child that would gladly switch places with her son if she only knew how. Give me diabetes! Not him!! I still have moments that I want to scream and shout. I don’t want this for him.

But then I remember that there are families that had children diagnosed at less than a year, or at 2 years or 4 years. I know it’s not cancer. We aren’t going through chemo, radiation, or blood transfusions. This is a manageable condition. But, still.

 

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.

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.

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.