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.

Tennis for the Fall?

Blaine has never been one to love sports. As a baby he didn’t walk around kicking balls or asking for me to throw balls to him to catch. He sat for hours with his Little People, and then Legos, and then Minecraft building worlds. He will read books with several hundreds of pages in one day. He absorbs facts and can carry on adult conversations with assurance and always seems slightly disappointed when I don’t have immediate answers for him. No, I don’t know how many galaxies there are and sadly I cannot contain historical facts or dates. He was a team captian for Academic Bowl this past spring.

But sports? That is something I feel like we have (painstakingly) encouraged each year, season after season. We’ve tried karate for a year, two baseball seasons, two summer swim teams, one track and football season, a junior PGA golf team and three basketball seasons.  Our goal was just to complete each season. To be fair, he did like track and basketball and we will likely do those again this year. But, my rule for the fall was at least one activity per child that will require two nights of practice a week.

Aislin will be doing cheer again and tumble, she wanted to squeeze in hip hop too, but I think that may have to wait. Blaine needed something. We had tried a tennis camp the summer before 2^nd grade. I found a Groupon for tennis lessons and bought it. We found a coach that he has clicked with. So far, he likes tennis. After the Groupon lessons ended I signed him up for more private lessons that the two of us are now sharing. Then I signed him up for a 10u tennis league in our neighborhood. I'm not a tennis player and I don't even know how to keep score, but it has always been on my bucket list to learn. We shared our first lesson and had a great time. My fingers are very tightly crossed that this will be the sport that clicks for him. We’ve seen the difference that exercise makes on his blood sugar. Being part of an organized activity is the best way to ensure exercise. I’ve got some strong hope for tennis to be his sport!

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.

Independence Day

One day my wish is that people with diabetes will have freedom and independence from daily blood glucose testing, carb counting and injections. One day maybe this will come to be.

July 4th Reunion

We had a great holiday. It was the first family reunion that I attempted to organize. And by organize I mean, create a private Facebook page and ask people to show up at a certain time. I am so blessed to have a truly wonderful family consisting of my parents, aunts, uncles and cousins. My cousins are more like my siblings and my cousins and siblings are my friends. I loved every moment of the craziness we experienced over the weekend.  Morning coffees and talks, three mile daily walks, little people all over my house with Kindles, iPods and iPads. Such a rainy weekend, but we still had a great time.

How do you not let the numbers dictate your mood?

This is what I need to find some better answers to. And our walkie talkies died so I was awoken at 1-something-am with Blaine yelling “Mom! Mom! I don’t feel good!” His numbers were fine. I think it’s just us being horribly off-schedule this summer. He was still up, but reading a book at 1:00 am. I told him that he was just over-tired and to go to sleep. Once he saw that he was 170 he fell asleep. I know he’s holding on to some anxiety about dropping low while he sleeps.

I thought we were doing pretty well this morning. I woke him up by 9:30 am in attempts to find some kind of schedule. His numbers were good. We did his insulin immediately with breakfast. Then we went to run some errands before picking up Aislin from a sleep-over and then meeting my friends for lunch.

As soon as we got into the car Blaine said he was thirsty. Polydipsia. The word comes to mind every time. I was feeling confident with the amount of insulin that we did and it was too close to the dosing and breakfast to get an accurate BG check, in my opinion. We picked up Aislin and they immediately began bickering. We have quickly learned that Blaine has various levels of high.

When he is slightly high, he talks nonstop, he says silly words and can be sometimes funny, sometimes annoying. When he is too high he has zero tolerance for his sister and becomes very moody, very quickly. Coping skills vanish and he is irritable. We decided to check before going in to meet Jackie and Robyn for lunch. He was 299. What!?

Aislin asked Baline what happens when he is too high. He told her that he gets headaches and doesn’t feel good. She again asked the same question, getting frustrated from her lack of sleep from the sleep over. Blaine tried to clarify the question. She yelled her question louder, with no clarification, just amplified volume. I tried to clarify. She got angry and yelled that she didn’t care. Blaine, equally angry, and high at this point finally yelled back to her, “If I’m too high I will die. Okay? There, I will die if I stay too high. Does that answer your question?”

Truly not a conversation I ever anticipated my children having.

Throughout this exchange I felt my blood pressure rise. Was it anger, frustration, confusion, defeat? Probably all of those things. What happened? I still don’t know. Did we miscalculate breakfast? Did he not do the insulin correctly? He does the majority of his injections, although I supervise and usually prep the kwik pen. Did it all not go in? It’s just frustrating. On top of that we were trying out a new pizza place. While waiting in line, he did a correcting dose and we guessed at the needed insulin for his food.  Who cares if the people around us don’t want to see my son inject a needle into his stomach? I don’t want him to have to inject a needle into his stomach, or arm, or leg. For the first month we were discreet, but when Brent suggested that Blaine go into a restroom to do his insulin while at a restaurant I drew the line.

Forget the discomfort of others, not that I’m insensitive. I just care about my son, his comfort and his needs more than the comfort of those around me. Even if they have needle phobias. I don’t mind when women breast feed in public, even if it is a walking, talking toddler that they are feeding. Others can get over my son doing injections in public. I will not have him going into a nasty restroom to give himself the insulin that his pancreas is failing to do.

We checked two hours later and he was in range. Good thing. But then, just before dinner, with no snacks or food in between the last BG check he was slightly high again.  His last A1C was 7.0. I’m already stressed that his next one will be higher, probably at least 8. I know the numbers shouldn’t control my feelings. But they do. These numbers are now one more thing that can make me feel like a failure as a mother.

If I let them.

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.