The WAG King

“Did you bolus for that?”

 

“No its Christmas. I am not bolusing for Christmas. I decided that I need a vacation.”

 

“Funny…NOT. How much are you going to bolus for that? Do you even know how much you ate?”

 

“I am thinking that 60 sounds good. I like it. I think I will bolus 60.”

 

“Have you actually totaled what you ate to get to that number?”

 

“No. It just sounds good.”

 

At this point I mentally groan and begin to do the calculations….”You had potatoes, dressing, some carrot, a glass of milk, and then there was the pie.”

 

“Don’t count the pie. I just bolused the pie. The pie is covered.”

 

“Okay so your main meal.  That would be about 58g CHO.”

 

“See I told you 60!”

 

Darn, he still has it. He can still make a complete guess on a meal and manage to come within grams of what I would think the carb count for the meal would be.  The WAG King holds his throne for another day.

No this wasn’t his 60 CHO meal honestly :)

Is Ignorance Bliss?

Yesterday my friend Tom Karlya asked the question, "Do you wish you had a lot more knowledge about (not the managing aspect) of what ‘it meant’ when you or child was diagnosed with diabetes?"  It got me thinking back to our life in the early years of diabetes.

 

I had no knowledge of diabetes before my son was diagnosed.  My mom had a friend with a son with diabetes but I knew them in the days before reusable pens, home blood glucose testing and the popularity of insulin pumps.  He was just a child who sometimes got to lay on the couch rather than play outside with the rest of us.

 

A bit more knowledge of the symptoms may well have empowered me to ask more questions and demand better answers the very first time my son was taken to the hospital. Hindsight is always 20/20 however.

 

After diagnosis, there was also a period of ignorance. I knew about Dead in Bed and I was suitably terrified. I understood highs and lows and really didn't want to leave the perceived safety of the hospital.  When we were forced to go home, terrible things did happen.  One day my son was whining and demanding to go inside. It was the first nice day after a long winter and I was enjoying getting some yard work done. I made him wait. He passed out in the dirt.  I didn't know that his whiny toddler behavior was also a sign that his bg levels were dropping. I learned quickly after that.

 

Our first illness and broken arm were also dealt with in relative ignorance. I was still trying to wrap my head around what to do and how things worked. I gave him insulin no matter what. I prayed he would eat--he often didn't but when he was sick, that seemed to be okay. Ignorance allowed me to continue somewhat buffered. I didn't fear all of the things that could go wrong. I was clinging to my own sanity, overwhelmed by what I did know and not able to begin to think of all that I didn't.

 

My heart goes out to the nurses and doctors out there who do know.  The ones who can "see" and imagine to the extreme.  Ignorance allowed me to learn at a pace that I could psychologically handle. A bit more knowledge before diagnosis may have saved us some serious stress but after? No thanks, the learning curve was steep enough.

Blue Candles...Once again

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Last week I saw them appear twice.  A young boy around 11 years old and then another child just beginning their life as a young adult dead at age 18.  Heart breaking, painful and leaving us desperate for a cure, I also thought is was a good time to revisit that post.  The circumstances of my life have a changed a bit. My children and I are both older but the feelings remain the same...

Blue Candles--they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

 

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

 

I don't tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don't light candles on my Facebook profile.  I don't write about half of the stories that I hear.  I can't. I read about these children--whether they are fourteen or forty, they are still someone's children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

 

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can't focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn't. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

 

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

 

As parents of children with diabetes, we do all of that "normal" stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

 

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

 

Last night was my son's first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son's hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

 

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

It's Not My Disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.

 

Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.

 

I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.

 

As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.

 

With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!

 

When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.

 

We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  ”Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.

 

I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

A Rose Colored Life

I am slowly adjusting to not having any young men living in my house anymore. As I have said many times, it is a challenge for me on so many levels. I have found test strips in a few places and I can’t take it upon myself to pick them up.  They are physical reminders of my child. I actually smile when I see them.

 

This one greets me in my laundry room each day.

Yesterday I realized how much we can romanticize situations when someone is away.  I am almost looking forward to getting up and testing my son through the night over Christmas. Gone is the dread and frustration that I carried for years.  Now, I will be doing him a favor–and more importantly I will have data to look at!!

 

Life can almost be rosy when they are away and you are simply talking on the phone or texting.  You can forget the challenges of trying to get a teen involved in his diabetes care.  You can gloss over the attitude that they can carry with them, the eye rolls and the shrugging of shoulders.  You don’t have to consider the fights over homework and grades.  There is a certain bliss about the situation…and then there are the challenges….

 

I am not there to force him to do homework and improve his grades. I cannot physically see the assignments that he should be paying more attention to but I do see the results in his report cards. I am not there to ensure that he is in the house at what I feel is a decent hour. I am not able to make sure that foods are bolused and testing is done.  This can lead to a sense of frustration and powerlessness. It can be torture….or I can go back to life with the rose-colored glasses fondly looking at dead test strips and remembering only the fondest of memories.

 

It is funny how the mind works.  I am at the point where I do both–I think of my son’s laughter and sense of humor. I wish that I could still do more about his diabetes care. I want to strangle him and kick his butt over his plummeting grades. I want to hook him up to a CGM and be done with it no matter what he says.

 

Such is the challenges of a child who is no longer small.  This is the way it is when he no longer lives in the same house, the same city, or the same part of the province.  This is how it is when he is struggling to be his own man.  It can be painful. It can be a learning experience for both of us. It is most certainly the greatest challenge of a parent.