Who will do the pouring?

It was 6:30am.  I woke up in shock at first that I had slept so long and then calmed myself. I had gone to bed after 1am and my son was still up doing his “thing” for a few more hours.  He tests before he goes to bed so it was probably just the right time to test. And I was right…

I checked, doing my best to stay 3/4 asleep so I could doze instantly when I returned to bed.  He was low.  No such sleeping allowed. I got a glass of juice and told him to drink.  I continued my routine of heading back to my room to wait for 15 minutes.  As I headed back however, I began to think…what will he do when I am not there to wake him and bring him juice? I know that many adults with Type 1 diabetes handle it fine.  They have glucose or juice boxes by their beds. They wake up and deal with it. Its part of their lives…but this is my kid. He is not an adult that I know.  No matter how big he gets he’s my little boy.

I hope that he will wake on his own. I know he has done it (and complained about this new-found ability) when he was away from me. It still makes me worried. My son is very private about his diabetes. He is also very independent.  That is a good thing and a terrible thing for a mom.  I know he has good friends. I know that they would watch for him if he was living with one of them…but what if he wants to live alone? Well, he should have that right! But as his mom, I worry. I know it will sort itself out. I can’t borrow worry. I can’t predict the future.  At night, nightmares rear their heads though.

Its daytime now.  Time to focus on the today…like getting him to take out the garbage and Swifter the floors! He will soon be 16 and there will be enough to worry about with him learning how to drive.  I will save the worry about how he will handle nights alone for a few more years…or another late night/early morning low worrying session!

juice

Join me on De-Nial

This has been a very emotional week and I have tried to insulate myself from a lot because…well I don’t know if I can handle too much more.  Recently, my family lost a dear young friend. He spent a lot of time at my house while growing up, was a good friend to my children and had only just become a new father himself. He death was both sudden and shocking.  He was only 21 and I still cannot begin to imagine the pain of his parents.

This week I have been seeing many Facebook posts about 3 or 4 children with Type 1 diabetes who died in the within the past few days.  That is way too much death for me to handle.  I honestly have not read the stories. I have heard of officials questioning the diet of an undiagnosed toddler who died–as if his sugar intake could “cause” type 1 diabetes rather than the medical community not diagnosing him? The horror is unimaginable.

As I mentioned the other day, this was also diabetes clinic week.  I still don’t have our most recent A1c back but we got a great pep talk about how its just a number and its only a concern if there is continued problems. I give that speech but it was nice to hear them saying the same thing to my son.  No matter what  reading comes back, I hope we do watch things more carefully, learn and move with forward with a stronger footing.

After the doctor’s pep talk and my mention of the possibility of a rebound at night after what I assumed was an undetected low, our nurse came in.  She reviewed the documentation and said “Oh, he had a really bad low did he?”

I was kind of puzzled. What bad low? What happened? Where was I?

“He went low at night. How terrifying for you!”

Crap! That low! I had put “that low” out of my head.  It was my big failure. It was my biggest fear almost realized. Did she have to mess with my protective bubble? As I said, this has been a rough week and I was doing a great job at insulating myself against any more stress or guilt.

Mess with my bubble she did! Instantly I had a flood of guilt as I remembered hearing someone else innocently telling me that they had woke up to hear my son moaning in his sleep and knowing that I didn’t wake up!  The panic stormed back in as I relived the fear of “what if his body hadn’t kicked out glycogen?”  Was he really going that low? Could something horrible really have happened between the 3am check when he was perfect and the 7am check when he was high?

I quickly shrugged her comment off stating that I didn’t know “for sure” that it had happened. I made adjustments the following night based on assumptions and the fact that he was insulin resistant for most of the next day.  Extreme testing, him waking and telling me he was dropping, and subsequent basal reductions would suggest that a problem may have occurred, but let’s again say that this was all very theoretical.

She simply nodded as if to say “if it looks like a duck, quacks like a duck, and walks like a duck, its probably a duck.”  Or in diabetes terms “If it looked like a rebound, you had subsequent lows at a similar time, and a reduced basal fixed it, he probably went low and you missed it!”  Thank heavens she just nodded and smiled.  That allowed me to slip back into my lounger on the River De-Nial.  Its a beautiful place.  With all of the ugliness of the week, I think I will happily float there a little while longer. The alternative is not a good place to be–terror, guilt, and more sleeplessness.

floating

Make it go away…

Today I had a conversation with my son that left me both devastated and frustrated. I know that he is just being a teen. I know that he is trying to exasperate me…and he succeeded.

My son has a diabetes clinic appointment coming up in a few days.  Neither of us are excited by this event.  We don’t really get a lot out of it and the wait times are crazy.  He can’t wait until he doesn’t have to go anymore. I reminded him that he will always have to go to have prescriptions refilled, etc.He was not impressed. I have told him that I have to do the same thing but that does not appease him.  We have been doing this since he was 2 and he wants to see an end date.

We discussed the fact that he had to attend his clinic appointments because  he needed a doctor to sign off on his driver’s licence in the fall. I don’t know what exactly is involved in the licensing procedure but I am pretty sure that his doctor has to give him the okay.  My son then asked if his licence would be restricted.  I assumed it would, just as a person with glasses must wear glasses, someone using insulin will have to be using their insulin.

He was not completely appeased but was doing okay until a little later on.  He was complaining about his being hot feet and stated that he should run around barefoot all of the time.  I said that that may not be the best idea.  He said it was fine for the Indians! I said that they were not running on insulin and he had to watch his feet.

That was the final straw for him.  He asked why he should even bother to get out of bed in the morning? He would have to watch his feet for the rest of his life.  He has to check his blood each time before he could drive.  What is the point to any of it? If he was born years ago, they would have left him to die and maybe that was the right thing!

I wanted to cry (and still do).  I wanted to scream–are you crazy!!!???? I almost lost you once! That is NOT the sort of talk I want to hear EVER!

I tried not to be mad. I tried to understand but I simply said, “Yep it sucks but that is your life and you will handle it.”

I know this is teen frustration. I know it will pass but he does scare me.  When he does not have me around, he doesn’t bother to test. He swears he can tell if he is high or low and he just wings it.  Yes, he probably can tell when he is running in range but the higher he runs himself the less sensitive he is and the more danger he skirts around. What will he do when he is on his own? The years are passing so quickly.

I have been sent an advanced copy of Moira McCarthy’s new book “Raising Teens with Diabetes”.  Perhaps she will have some strategies to help me cope. I think I could use a few about now. sad

Diabetes is HARD work!

Yesterday I finished reading Gary Scheiner’s new book “Until there is a Cure“.  I will be writing about it in more detail later this week but one thing struck me as I read–diabetes is hard work! As I have mentioned numerous times, I have been at this game for over 13 years now. I should kind of have an idea of just how hard this diabetes thing is to handle but seeing it in print made it worse.

I was tired and overwhelmed by what I read.  I worried about my son once again.  There were complications to concern yourself with as well as preventing complications.  There are reading before you eat and after you eat.  You need to try to eat lower glycemic food (I am only just figuring out how the glycemic index works after years of a mental block of the concept!). Some times you should graze, sometimes you should pre-bolus, sometimes you should….throw your hands up and say I can’t do this!!! I am not a pancreas! I am not God!!! I am just a fallible person!!!

Yes that was my foot stomping,  with childlike screams, and ranting on my sleep deprived Monday! Now granted after making me feel inadequate, overwhelmed and an underachiever, Gary notes the many great online resources out there. He never suggested that I am a failure. He doesn’t judge or say that you have to do this, this and this or else but just reading about the various types of insulins, meters, trending software, complications, and preventative care initiatives, I was exhausted and sad.

Diabetes asks so much of us. People think that diabetes management means that  you inject once a day, avoid sugar, and lose weight.  That’s no big deal.  Those of us who live with diabetes know the real story.  Parents of children with diabetes have the added grey hair, extra wrinkles and bags under the eyes to prove it! photo