My youngest son had the opportunity to head out on the trails and enjoy a ride on his quad the other evening. He was with a responsible adult but "momma panic" still danced around the edges of my mind. The person he was with knows that my son has diabetes but knows nothing about the testing, etc that we go through. My son is old enough and responsible enough to handle these things. I had reminded him to have glucose and his meter with him. I know that he would bring them...not necessarily use them, but he would have them with him.
I had to have faith. He had been fine for a week when I had to go away unexpectedly. He survives each time he goes away on his own. He had been on a quad trip the previous weekend without his mother hovering and asking him if he had everything and he had done fine. He would be okay.
Just in case, I texted him a few reminders...
"Don't forget your meter and glucose"
"R u ok?"
"Set a reduced temporary basal"
It was the last text that created an entirely new level of stress for me. After him being gone for a few hours, my son called me. They were taking a break and the person he was with was making a call so he decided to check in with me (brownie point for the kid!). I asked him if he had set the temporary basal. He said yes, he had put on his travel basal.
WHAT!?!? That means MORE insulin. That is for the times when he is sitting in a car or on a plane for hours on end. It is not meant for days when he will be active, throwing his body around and pulling a machine out of mud. I could feel panic rising in my throat.
I tried to breathe as I told him to go in and stop it. He couldn't figure out how to do it! I continued to try to breathe as I tried to offer options over the phone. I finally headed to find his old pump. Perhaps the settings would still be the same and I could work it out while he was on the phone. In desperation I told him to shut down the pump and power it back up. It might then give us the option of stopping the temporary basal. It turns out that when you ask it to "stop delivery", the pump asks if you mean the entire pump or just the temporary basal. Victory! He hit turned off the higher basal and reset it with the lower rate. He was now good to go. Thank heavens!!
I worked on breathing again not daring to allow my mind to think about the "what ifs". My son continued to enjoy his day of mud and fun. Just another day in the life of a teen with diabetes!
Last week I suddenly had to fly out of the province for an unknown amount of time. My brain was mush. I didn't know what to pack or what instructions to leave behind. I double checked with Larry to ensure that he would be okay with my youngest son's diabetes care until I got back. I then went to my son and told him that I had to leave. They both fully understood the emergency.
I went over everything one last time with my son. I explained all of the tasks that he would have to step up and do for the next few days. Suddenly he looked at me in complete horror.
"I will have to make my own breakfast!?"
Yes.
"I will have to make my own lunch!?" he asked, with fear growing in his voice.
Yes.
"I will have to get myself up and test during the night? You mean every night? Until you get back?" I could see that he was weighing the benefits of packing himself in my suitcase versus staying home.
I explained that Larry had agreed to get up each night, make sure he was up and testing. He would be fine. I would be back. He could handle this. He was fourteen.
He looked at me like he was not exactly sure but again, he understood that this was extreme circumstances and he had to do his best.
I arrived back home on Monday, exhausted, drained, and somewhat at peace. I had spent close to a week with family, sharing stories, memories and lots of love. I had told my son that he must be overjoyed to have me home because he no longer had to worry about his own meals and testing!
"Actually, having Larry around was almost like having you here but he fed me more. He made me lunches and had my breakfast on the table each morning. The only difference is that with you home I can finally sleep through the night again!"
Well its nice to know I was missed...a little!
I waited a day to go through his readings for two reasons...first I was tired and second, I didn't want it to be my main focus. I had let him fly on his own. He was alive when I came home. The nitty gritty details could wait.
Last night we sat down to look at the highs and lows of the week. I must say that I was quite impressed. There were mistakes. There was a low at 3am that was rechecked at 10am. Not good but he was okay. There was a test at 5pm with no two hour after test until 11pm. In all honesty though, virtually every other test was there, including tests while he was off on a quad ride for a day. That was great.
The week went quite well for a man with no diabetes knowledge until we moved into his home, a teen who would really rather pretend that diabetes does not exist and lives to have Mom do as much as he can con her into doing, and a Mom who was physically out of the area dealing with grief and unable to really focus on diabetes when she was five time zones away.
I am so grateful that they were able to take over at a time when I simply could not be the pancreas I have been.
As we drove down the street my son turned to me and said, "You knew that I had diabetes when I took a face cloth to my tongue, right?"
I told him that he had wiped his tongue with a dirty sock and then recounted the rest of his diagnosis story. He told me that he was glad he didn't remember...I will never forget...
It was March. He had not been feeling well. He was two years old and wanted to do nothing but sleep and lay in my arms. He was going through diapers faster than I could put them on him.Everything we owned was soaked with urine. We had been to the doctor once...when he began to wipe the white spots off of his tongue with a dirty sock. They said it was nothing serious--an ear infection and white mouth.
When things didn't get better, I made an appointment with our family doctor. I stopped at the drug store before the appointment to pick up baby food. He was eating nothing, I hope the nutrients from baby food would help him until he got over whatever it was that he had.
We sat in a full waiting room waiting for the doctor to return from lunch. The people with appointments before us told the receptionists to take my son first. He needed to see the doctor right away. They could wait.
I took him into the examining room and told the receptionist that his feet were so cold. I had wool socks on him and he still could not warm up. He was asleep in my arms. His breathing was raspy. She looked worried.
It was not too long before the doctor arrived. He had known me since I was pregnant with my first son. He had been both my children's doctor since they came home from the hospital. He had a very concerned look on his face when he examined my son. I explained what the Emergency Room doctor had told us a few days before--that he had an ear infection but he wasn't getting any better. He looked at me concerned and said "My love, I could be wrong, but I think he has diabetes. He is in ketoacidosis. He could have a chest infection but I need you to go to the hospital right away for emergency blood work and a chest x-ray. While you are gone I will get in touch with the other hospital and get things organized for you."
I really had no idea as to what his words meant. I heard "diabetes", "ketoacidosis but could be a chest infection." It was no big deal. I had healthy children. He had a chest infection because little babies do not get diabetes and I didn't know what that keto...something or other even meant. He was fine. It was an infection. We would get an x-ray and they would give us something to fix it. No worries.
At the hospital we were met with the same fast service as we had seen in the doctor's office. My son did not stir when they took his blood. I had to hold him up for them to do a chest x-ray. People still gave me concerned looks but I remained insulated. My child would be okay. They were wrong to be concerned.
We went back to the doctor's office to wait for the results of the testing. I sat in a different spot this time. I was now directly across a poster that advertised the signs and symptoms of diabetes. "Frequent urinating, blurred vision, fruity breath, thirsty..." The list continued and I realized that my son had so many of these symptoms that diabetes could not be ignored as a diagnosis. His breathing continued to be shallow and he continued to sleep. Worry began to creep into my conscious. This was not just a chest infection.
The doctor called me into his office. He said he had arranged for the very best care for my son in the next city. We needed to drive there now. They were waiting for us. My son had ketoacidosis. It was vital that we get there now.
We packed up my boys and began the forty-five minute drive to the hospital. Later, my son's father would tell people that it was a blinding snow storm and he struggled to get us there safely. I honestly don't remember the drive. I focused my attention only on the lifeless little body in my arms. I didn't dare put him in his car seat. I held him the entire way. I prayed like I had never prayed before. I willed my life to go into his body. He could not die. Nothing could happen to my child. I had lost a child before him in a miscarriage. I would not lose one of my precious little boys. I would die first.
We arrived at the hospital and I was dropped off at the door while my son's father looked for a place to park. The lady at the reception desk seemed to take forever to fill out the required paperwork. I worried that she was stealing minutes of life that my son didn't have. I knew she had to do her job but I was now terrified. She must have sensed how scared I was because when she was done, she personally took me to the ward where the nurses were waiting for us.
They took my two year old son and tried to weigh him. He was too weak to stand on anything so they put him on a baby scale. He weighed 11kg. How was that possible? How could he be so tiny? I was shocked and more terrified than ever. They hooked him up to monitors and waited for the doctor to arrive. There was a snow storm on and was not in the hospital yet.
It didn't take long for the man who would save my son's life to arrive. I was shocked to see this man who looked more like a lumberjack than a doctor walk through the door. His hair was messed. His beard was big and bushy. He wore a plaid shirt and big winter boots. He looked at my son and order him into the Intensive Care Unit. Things quickly went from bad to worse.
My son's bed was taken from the pediatric floor to the ICU ward. We were surrounded by older people who were dying. My son was a baby. He could not be here. This was wrong. They made me leave the room as they began to run tubes and IVs throughout his body. Finally the doctor came out to talk to us.
He said that my son had diabetes. His blood sugar was at least seven times what it should be. He did not know how much damage had been done. They would give him small amounts of insulin over the next twenty-four hours and see if he responded. There was a real danger of stroke, heart attack or prolonged kidney damage. If he lived for the next twelve hours then we would begin to look at the future but first we had to get through the night.
I was stunned. I couldn't breathe. I went to call family. All I could say was to pray. I told them that we had to wait twelve hours. I asked my mom to call the rest of my family. I couldn't do it. Family that lived close to us had already called our family doctor and knew that things were not good. I then sat and cried but I couldn't cry for long. I had to be strong. I had to give my strength to my son. (I would not cry until months after but when I did...well that's another post)
That night I slept at his bedside. His father and brother spent the night on the couch in a nearby room. We all prayed and waited. The next morning my son stirred for the first time in too long. He tried to pull out the many tubes running from all over his body. He was back! He was going to be okay. I knew he was. Nothing else mattered.
He was eventually moved back to the pediatric ward. We would spend two weeks learning about diabetes care and curing the chest infection that he did have. I knew that life would be trying but he was alive. That was all that mattered--he was alive.
That was twelve years ago today and yet the memories and the emotions are just as raw as if it happened yesterday. My son does not remember...but I will never forget. I thank God each day that my son is alive. He may have diabetes but he is still alive to live his life to the fullest each day.
When I created the new logo and posted it here back in November, I promised that I would be working on a new cleaner, easier to navigate but just as informative website as I always had. It had taken me almost six months of programs crashing, data destroyed, starting again, and fixing html codes to get things up and running.
Over the past few days, I have alternated between wanting to be done and publish the new format, to being terrified of all of the errors and my site crashing because I had messed up so much.
Well my eyes are now permanently crossed, I have found many errors already and will be working to fix many more over the coming weeks but....I pressed the button and this is what happened...
It worked!! So I began to check other pages...
The tattoos were now a little more organized! (We now have over NINETY tattoos!! Wow!! and they have even been featured in recent news reports!)
Pages like my diabetes terms section needs a search engine that works. This one looks real enough but searches...nothing unfortunately.
And that page that I thought I had fixed...well I guess that was just wishful thinking! A lot more to do on this page!
But all in all, its up. Its hopefully running. I hope everyone likes it and finds it helpful!! Time to look for more errors....
At three in the morning, when you are dealing with a low blood sugar, its amazing what can go through your mind...well my mind at least.
I never panic with the first low. I always say thank you that I woke when I did and attempt to wake up just enough to stay alert for at least the next half hour. It would appear that awake "just enough", leaves my brain in a very odd place.
As I began to feed my son glucose tablets in his sleep, I was transported back to a t-shirt my mom had once brought me back after a vacation to the interior of British Columbia. Pictured on the front were two bears talking to each other as a bus load of tourist drove by. One bear turns to the other and says "Look Marty, vending machine!". As I continued to put tablets in my son's mouth I thought, "Yep, feeding him is just like putting coins in a vending machine!" Not quite what the bears were referring to but it all worked in my sleep deprived mind.
By tablet four I had a new thought swirling around in my muddled grey matter. Now the Juicy Fruit gum theme song was playing. All I could think of was "Pop in it your mouth...Juicy Fruit its gonna move ya." Glucose tabs, their gonna move ya? It worked for me. This could be a new commercial! The music continued as I read my book while waiting to retest.
I began to wonder, do all parents have such odd thoughts at three in the morning or is it just me? Who knows but we have to have something to amuse us and keep us semi alert during these times.
Today was that day we all dread...the diabetes clinic day. It started badly. We circled the hospital parking lot forever waiting and waiting for a spot to become vacant. My son rode shotgun and called out "Over there! There's a truck...too late. Follow that little old lady, she's...nope someone got there first." This was our morning for close to 45 minutes. We were late for our appointment.
I was only mildly concerned because, like all good doctor's offices, I knew that this one would also be running behind. I was right. The time spent looking for a parking spot was the time we otherwise would have spent sitting in the waiting room.
Relatively quickly, we were ushered into a room and waited for our numerous visitors. The first person to come in and chat wanted to know how things were going at school. Did we have any issues? Did we need her to call the school? No, we were doing alright there. The issues I had at school were not anything that would be fixed by a phone call. I needed my son to be a little more visible with his diabetes and be less self-conscious about testing. No one could fix that but us.
I was surprised to see my son's doctor arrive next. I have been lucky to have had great doctors for my son since his diagnosis. She asked him how he was doing, asked about any illnesses and then turned to me for basal rates. She looked at his age and asked him how long he had had diabetes for. My son was stuck.
He looked back at her with a blank expression. I could tell that he was thinking, "What do you mean? I have always had diabetes. I can't remember when I was diagnosed. I can't remember my life before." Instead he just said "I don't know."
I piped up and said that it would be twelve years on Saturday. She smiled and said that Mom never forgets. How right she was.
Ironically, on our drive to the hospital that morning, the conversation of my son's diagnosis came up. He asked a few questions and I told him that he had escaped Death's grasp those many years ago. He was rather silent and then said, "I am glad that I don't remember any of that."
I smiled. I wish he remembered life before needles and testing. I wished he remembered a time when it hurt to lance his fingers--he told the nurse today that he no longer feels these things. I hope for a tomorrow when he can look back and say "I used to have diabetes." For now, I just remember how far we have come and continue to grateful every day that my small little boy didn't answer the door when Death came knocking almost twelve years ago.
My son began to pile his site change supplies on the table. I was impressed. He was a day late for his site change but finally, without a lot of nagging from his mother, he was going to change his site!
"Don't forget to bolus for that soup first before you do your site change."
"I can't. I am out of insulin."
"What? What do you mean you are out of insulin?"
"I'm out of insulin. Why do you think I am doing a site change?"
"Ah, maybe because it was due YESTERDAY!?"
My son looked at me like I was insane. I rolled my eyes and proceeded to continue on dealing with things that I had to do.
"Where are you going? You can't leave. I need you to do my site change."
"Why do you need me? Where are you putting your site?"
"In my leg."
Now it was my turn to look at him like he was nuts. "You don't need me to do a leg site. You are perfectly capable."
"Yes, but Mom, you realize that you only have four more years to do site changes for me. I will turn 18 and move on and you will never have this opportunity again. You should be savoring these times just like you say how important it is to share each birthday with me before I leave home. Actually, think of these site changes as being just like my birthday but every three days. Treasure them. In fact, we can make it like my birthday if you want. You can even buy me presents for each site change done!"
His logic is interesting if nothing else!
Note to self, do not tell him how important it is to value time spent with a loved one again. Our idea of quality time seems to be a very different!
As promised months ago, I have been working my fingers off trying to get my website ready to publish in a fresh new look. To say it has presented challenges would be an understatement. I have lost weeks of work. I have found coding errors that I never knew existed and I have a LOT of data! Nonetheless, I am still hoping to have it up and ready to publish in the very, very near future.
Yesterday I tackled one of my more challenging pages--the Faces of Diabetes Page. It contains stories that I collected back in 2005 of people living with diabetes. As I looked at code, changed pictures and updated a few notes, I allowed myself a bit of time to read through some of the stories.
First, let me say that almost seven years later, many people could still make me cry! The raw emotion and the openness with which they told their stories were nothing short of amazing.
The other big thing that struck me was how long I have known some of you! I was shocked to realize that its not just my son who has grown since I first asked for these stories. So many other lovely children who were profiled are now young adults.
Finally, I was surprised to truly realize that I connected with so many of you at the beginning of your journey with diabetes. Over the years we have become friends. We have listened to each other's frustrations and victories. Time passes but I always remember how blessed I am to have "met" so many of you. Its incredible to see how far we have all come.
I would love to add more stories to this page. Please, consider sharing your journey with me. For those who have already shared, come back and look at your story. They will touch you I guarantee!
Today, as I stood in the bathroom preparing for the day by applying make up in hopes of erasing those fine lines, I realized something. This was the month of March. Today was the 5th of March. The anniversary of my son's diagnosis with Type 1 diabetes will occur in 12 days.
Since Diabetes barged its way into our lives, March has always come in with a dark cloud. It would be lurking overhead no matter which way I turned. I would do my best to look at it in a positive light. I would "celebrate" how far we had come. I would count the wonderful friendships and experiences that it had brought into our lives. I would remember. I would look back. I would relive each detail of diagnosis again and again throughout the month.
This year, I have looked at St. Patricks' Day with my same dismay. Its not a day that I feel is filled with luck although we were lucky to save my son. Its a day of reflection but its a day , this year at least, that has seemed to be a long ways off.
I have been worried about getting my oldest son's birthday present purchased and in the mail so that he has it in time for his birthday at the end of the month. I have wondered how 18 years could have gone by so fast. Diabetes was not a thought.
I have focused on really trying to get the new, error free, neat, clean, and easier to use web site up and running. For months I have fought with code and lost data but am now more determined than ever to get the newest version of www.diabetesadvocacy.com up and running this month.
I know that as the 17th comes closer I will reflect. I know that I will relive every moment of that dreaded day. I know that my blog post for that day will look back to that day but for the first time in years, it has started to fade. It is not on my mind all month. Yes, it was a day that changed my life and the life of my family but its not as all consuming of a day as it once was.
I talk about my son taking baby steps forward in his care. Perhaps, after 12 years, his mother is finally taking baby steps towards healing as well.
The other night my son and I were sitting at the kitchen table working on an essay about stem cell research. My young son would rather have been doing anything else but working on this topic so his mind and his mouth constantly wandered to strange new topics. In an attempt to steer him back to the subject at hand, we discussed the use of stems cells in diabetes research.
Out of nowhere he comes up with the idea that people who develop diabetes have had too much sugar and thus "caused" their diabetes.
I replied with my usual "Yes, I force fed you chocolate bars at two and gave you spiked your bottle with nothing but sugar water until finally I succeeded in giving you diabetes."
He looked at me a little strange and I finally replied "Are you crazy?"
His response was "Well, everyone says that if you eat a lot of sugar you get diabetes. They must be talking about Type 2 I guess."
I suddenly shifted gears. He was no longer just goofing around. For some reason he was actually thinking this is true. He asked why "everyone" would say this if there was not some truth in it. I didn't have an answer. I gave him my standard spiel on genetics and how it plays a role in those developing Type 2 diabetes. I told him the benefits of eating healthy for everyone and most especially those who could be prone to develop diabetes.
The conversation continued as he noted that his brother's children could end up with diabetes now that he had added the genetic component to their gene pool. He didn't think that that was fair. I explained that nothing was a given in his own children or his brother's potential off-spring.
We finally moved back around to finishing his paper and establishing his position but the conversation left me a little taken aback. My son, who has lived with Type 1 diabetes since he was two years old, is thin, has always eaten in a very health conscious manner, rarely eats sweets, and has been educated by his mother on the realities of diabetes and the fact that this is not his fault, had begun to question his role in this horrible disease. That scared me. If he can be sucked into the vacuum of misinformation, what in the world are we going to do about John Q Public who does not have the benefit of a D-parent?
