View from a plateau

Last night, as I was laying in bed trying to get to sleep, I realized that while diabetes is a constant roller coaster ride, living with a child with diabetes has been a journey in and of itself.

When he was diagnosed over eleven years ago, we were dropped into a forest. I was grateful that there was light and my son was alive to see it.  I had some fear of the unknown but it did not overwhelm me.  I saw the trees but didn’t notice the forest.  I saw a trail that led me forward and with some trepidation I followed it.

Life with a toddler with diabetes had many forests to navigate my way through.  Along the way however, I was thrown a backpack.  It was filled with knowledge and support.  There were Scooby Doo band aids to patch up the “owies” and make me laugh.  That backpack was the parents mailing list.  The people I met through the email list are still on this journey with me today.

As we made our way through the forest, there were ravines that came out of nowhere and brought us to their brink.  Those ravines came from dealing with a child too young to understand what has happening to him, NPH unpredictability, and so much more. We still come across them now and then but I have my backpack and have developed strength of character that somehow gets me through.

In the preteen years, we walked along a river bed.  The waters were sometimes calm and gave me a sense of peace.  I could do this.  I had a handle on things but I knew that beneath the water was a current that I could not fathom. Puberty loomed ahead and I enjoyed the calm waters while I could. 

The river bed had its share of rocks for us to stumble over.  We were entering a time when I had to begin to let go.  My son’s doctor wanted him to begin to take ownership of his care.  He was testing but he was to learn about his pump and Mom was to step back a bit.  This brought rough travels, more scrapes and the need for those Scooby Doo band aids more than once. The river led us to the foot of a mountain and I knew that there was no way around it. Puberty had arrived and it was now time to enter the ominous mountain ranges.

I am not a climber. I am not an adventurer.  I had made it this far with help and developing a confidence that allowed me to move forward.  I knew that these mountains could be treacherous and I now knew enough to be terrified.  Puberty–my next mountain range, would bring steep learning curves for both me and my son. The drop from any of these mountains was no less deadly than the ravines we had avoided earlier in our journey. With my backpack tightly attached to my back, I took my son’s hand and we challenged the mountain.

Its been two years since we started this climb.  There have been paths filled with boulders.  There have been grassy patches that allowed us to rest.  It hasn’t been easy but I feel that we have  finally managed to make it to our first plateau. 

I am at a spot where I can now look out and breathe a little.  My son does a lot of his own care. He changes his sites (most of the time).  He fills his cartridges (although not until his pump screams that he is virtually out of insulin).  He tests quite often although not always at the points I would like.  He has began talking to me about when he needs to make changes in his rates and has a pretty good grasp of carb counting.  He goes to bed later than me so he does his last test at night and I only have to wake in the wee hours of the morning to check on him.  He occasionally wakes when I test him now and that gives me hope for him waking when he is on his own one day.

The view from this plateau is amazing. We have come so far but there are still  huge range of mountains for us to traverse.  We have many more teen years and freedom issues to navigate through.  There will be some forms of rebellion, the stretching of wings, and pushing of limits. There will be learning to let go and him learning to stand by himself.  For now, I will enjoy the lull in the fight.  Readings are okay, attitude is positive, and life is good. I will sit here for as long as the diabetes gods will allow.  We will recharge and get ready to tackle the next mountain thrown in our path.  

I never did like rollercoasters

I am not a carnival ride person–ask my kids.  My oldest son is a roller coaster freak.  The scarier it is, the happier he is.  My children live to torture me by making me got on some of their crazy rides but nothing is more insane that the ride called “diabetes”.  It is one that I did not plan to get on and sadly there is no way off.

My favorite saying is from an amazing mother of a child with diabetes who years ago told me that “living with diabetes is like driving a car from the backseat, steering with two rubber bands while careening down a winding road.”  That about describes it! Its just nuts.  The ride will leave you in tears of frustration and a reading “in range” can produce a weird happy dance that is understood only by others traveling this road as well.

We deal with lows and picture young minds starving for glucose.  We can fear seizures and brain damage.  We experience highs and wonder if this one will be the one that starts to shut down those small blood vessels in the eyes or kidneys.  We careen down this road wondering about the unknown and praying that our best efforts will be enough.

When I was first put on this Diabetes roller coaster, I quickly learned that there was only one way to maintain my sanity.  I had to look at life in four hour blocks.  That was a challenge. I was a person who planned for 10 years ahead and now I could only plan for four hours? I realized that if I wanted to stay somewhat sane then four hours it was. 

Why four hours? That is the technical duration of our fast acting insulin.  That was the time between the breakfast needle and lunch,  the lunch needle and supper, and the supper needle and snack.  Four hours was what counted.  In four hours, I could generally see if the ratios for a meal were set okay.  After four hours I could make a decision on basals but four hours was my report card.  Did I pass or fail as a pancreas during that time frame?

Times have changed and we are no longer injecting every four hours.  My son now uses an insulin pump and we bolus on an hourly basis it seems as he grazes through our kitchen.  I still look at life in four hour bites.  Its the only way I can handle things as yesterday clearly shows.

Summer is finally thinking about making an appearance here so we are seeing an increase in activity levels.  There is now hockey outside and grass that is being mowed.  Last night I reduced some basals.  He was low in the evenings and when waking up. I knew that this would be the first of many summer adjustments. 

Later that evening I heard someone stirring. I got up and found my son in the kitchen getting ready to make some Crystal Lite.  My first thought was he had stayed up way past his bedtime to watch the hockey game.  My second thought was he was high.  I was right on the second one.  

“How high are you?”
Grumble, mumble and no clear answer as he heads to his room.  He hadn’t tested. He just knew he was thirsty. 

“If you are high, bring water to your room.  Did you change that site that was over due? Do NOT bolus a correction on a dead site that was supposed to be changed DAYS ago! Change that site now!  While you are at it, change the cartridge.  It will be low by the time you fill the tubing.  You need a correction with a syringe. Input the correction in the pump and see what it will suggest.”  My mind was way too tired to think about math at 1am.  

After a bit more muttering, I found out that he was 30 (540).  New site, new insulin, injection, bottle of water and he was good to go to bed.  I dozed off for about an hour or so when I was woke up yet again.  I could hear him in the washroom. I wasn’t sure if he was getting sick or just using the facilities.  I got up and waited.  He just had to use the washroom so thankfully we had most likely dodged the ketone bullet but I began to think that he would be very tired the next morning! I had him retest, correct and by 3am, we were both happy to be heading off to la-la land. 

In one day he had gone from the 2 and 3’s mmol (36-60 mg/dl) up to 30 (540).  His body had been through the Montezuma of roller coaster rides.  My nerves had cruised along with him. The four hour blocks were–low when he woke, high when he forgot to bolus his breakfast, good after lunch, low after supper, good later in the evening, and a colossal high during the night.  Whew!

Today is another day though and I will wait to see what each four hour block brings. I will make some more changes.  I will work to bring things back down to a kiddie roller coaster ride for a bit but puberty and Diabetes will have other ideas.  Yes, a cure will be the only way to truly get off this ride for good.