My son has been away for almost two weeks. I still wake up at 3am and every hour thereafter thinking that I have to get up and test him. He has called me with problems twice. We have not had a lot of contact other than that.
When he comes home, I will look at his meter and do my best not to totally lose it when I see how many bg readings are missing. I have set a pretty low target in my own head for him to meet. If he has checked this minimal amount of times, I will do my very best not to freak out at all. If he has not met this minimal requirement, there will be a lot more talking and consequences. Well that is the plan at least.
In the meantime, I am slowly overcoming my latest bout of “Mommy Guilt”. You see, with my son gone, I can enjoy that extra glass of wine without worry that I will need to be focused and sharp at 2am. I can lay in my bed at 4am and not have to test to see if his bg level is rising or dropping. I do not have to figure out the carbs for any meal. Basal rates and site changes are things that I hope he is dealing with and I will handle further when he gets home.
I get that break. Now, my son gets a break as well. He doesn’t have me telling him to test. He doesn’t have me asking if he has changed that infusion set. I have only text him and asked about readings after we have made a change.
He does however still have to count all of those carbs. He still has to consider how to handle his insulin after hiking with friends or staying up until the early hours of the morning. He has to remember to do his site changes and to retest after a low. He has to decide when to say “this site has failed and needs to be changed.” He doesn’t get a break from any of that. He still has to handle those highs and lows while I get a break.
As a parent, we want to take those burdens from our children. We can’t of course. I give him as much respite as I can when he is with me, but one day soon he won’t be with me anymore. He will be doing all of this on his own. These small breaks prepare both of us but I know that I have the better end of the deal. I have started having nightmares that I have overslept and forgot to test him but they will fade in the coming days as I get back into the routine of getting up again.
It’s all a part of growing up with diabetes whether we like it or not…and I really do NOT like it.
I check my phone. Who is texting me at 6 in the morning? I really wanted to sleep in until at least 8 today. It wasn’t my phone. It must have been my iPad. Probably my oldest messaging me to tell me that he is up for work. I had been teasing him about over sleeping. I tried to go back to sleep.
“Your phone is ringing. Answer your phone. Its your phone. Please answer it!”
Nothing good comes from a phone call at 6:30am. I see my youngest’s phone number. I hear a deep voice. He had a site issue the day before. I am sure its my ex-husband calling to tell me that my son ended up in the hospital or they need help. As my mind clears, and I hear “we need to make some changes. I was low at 6am.” I realize that it is my son!
“What are you doing up this early?”
“Got to get my exercise! The early bird catches the worm! You can’t sleep your life away.” says the child who can easily sleep until two in the afternoon!
Hold on! He said he was low. Now he is saying that he is taking a morning walk. My brain is starting to clear and this does not sound like a good situation. I ask him if he is still low. He says no but he is walking and taking breaks just in case. He swears he is testing and he is okay…and then the connection is gone. I call him back. It goes straight to voice mail. I call again. Same thing. I try to go back to sleep but my imagination fires up in high gear. What if he went low and fell in a ditch somewhere. I text him to call me. I try to go back to sleep. It’s not happening. I call again.
Finally after about 10 minutes I get through. He had been camping with friends, got up this morning and was walking back to his father’s house. He was no longer low. The low was earlier. I asked if he had over bolused the correction from his site failure, been drinking, or made a bolus mistake in some food that he ate. He said to no to all of the above. I am not sure that he would have honestly answered question number two but I threw it in there amongst others so he could say yes, without saying a specific yes to the alcohol part. Either way, we decided to leave the low for another night because the corrections may have had an impact…amongst other things.
We chatted for a bit longer until he informed me that he was back at his dad’s and was hoping for a big cooked breakfast before his father headed off to work. We discussed bolusing strategies after his morning walk and then said good-bye.
I tried to go back to sleep but at that point I was sadly too awake to think about it. Instead and I lay there and realized that this was a foreshadow of times to come. Times when he would be by himself and possibly calling to bounce a diabetes strategy off of me (or not). Times when I would worry and wonder if he was safe after a low. Did he fall and there is no one to help him? Those are things I will worry about but he also showed that he was okay. He was taking it all in stride…literally. I will have to learn to do that too…one day…some time..later.
Wow! Did that really happen? Was it really that painless? Did I miss something? Why am I not ready to cry in frustration? Are we making progress?
The other day, I sat down with our notebook. Its the one that says what sort of workout my son did, how intense it was and what we did about diabetes care as well as what sort of results were had. I asked for his meter and I plugged it into my iPod. It had only been a few days since I had done this. I was still a little nervous about what I would find.
Despite the fact that bg level reviews are supposed to be a time for discussion and learning, they normally are times when I cringe and want to cry while my son glazes over and comes up with strange excuses for missed readings. This time was very different!
I noted the readings. We talked about foods before exercise. We talked about foods after exercise. He talked about how he felt exercising with various foods in his system. We looked at missed readings and high readings. He was quick to point out his own errors and state that he needed to improve to get back to that guy he had been the week before.
I told him he had done really well. I was impressed. He walked away with his own definition of what needed to be done and I did a small bit of tweaking based on my own feelings. The biggest shock was the feelings and the atmosphere when the process was over…It was great! There was peace.
I felt good. I was happy to see readings and an interest. He felt pretty happy with things in general. He had seen decent numbers and had a strategy for readings that were a little off. There was no blood spilt. There were no tears. Could we be making progress??
He goes away in a week and will be on his own for his diabetes care. This is normally a time when he applies the motto “When the cat’s away, the mouse will play!” or his his case when the mouse is away from the cat but you get the idea! I have been reading Moira McCarthy’s book
as often as I can.(Blog review to come later!) I think I have a better grasp of will most likely happen while he is gone and why. I think I may be better able to handle it when he comes back…well maybe
…well I will try
anyway! For now, I will just savor a really nice sharing of diabetes information with my son.
“Mom you should have warned me!”
What was he talking about?
“Mom you should have warned me that we have a clinic appointment tomorrow! I would have done a lot better. Today was a really bad day for da ‘beetus!”
He did know that he had a clinic appointment today. He simply chose to forget…like he forgot to test a number of key times throughout the day and like he forgot to bolus for his supper! It was a very bad day for “da beetus” alright!
I have downloaded his meter. I have written out his basal patterns and the result is that I don’t want to know what his A1c is because I know it will be bad. I also wonder what I have been thinking in looking at his basal patterns on the weekend versus the weekdays. The weekdays are a mess. My first guilty thought was “its time to do some serious basal testing and fix this!” My second thought was “why?” This is my son’s last full week of school. Next week is an exam every morning and then slacking…I mean studying every afternoon. After that it is basically summer vacation, a time when we switch over to a permanent “weekend” basal pattern.
I hate the thought of our team looking at his readings. They are a mess but each one tells a story. They say… “He didn’t weigh his cereal.” “He eats constantly and there is no break to test basal patterns.” “He is working out and we are working at learning how exercise impacts his insulin needs.” “Mom has given up asking for data and works with the little information that she gets.”
My son said that I should just let our team do their job. That would be great but they have no data either! How do you say adjust that basal or bolus ratio based on a reading that was taken 20 minutes AFTER he ate? Hopefully they will simply be on board with helping to get us a CGM in the fall or whenever the DexCom comes to market. Perhaps they they will remind him to test if he wants his licence.
I hate clinic appointments. Why do they always feel like you are going into the principal’s even though you know that you are doing your very best? Perhaps I will just go in, keep quiet and let my son handle all of this one…that would make things interesting! Wish us luck!
Thank you to everyone who offered kind words and support after my post
the other day. The day proceeded to get a little worse but in a way that had nothing to do with diabetes and managed to bring things into perspective for both of us. Each day will bring new challenges and as a parent, I have to work at letting go and saying just enough without making him feel as defeated as he did on Wednesday.
Not all days are that dark or frustrating however. Over the past week we have had a new competition of sorts going on. When my son and I eat together, he will usually wait for me to give him the carb count for his meal. He is more than capable of doing this on his own and does a decent job when he is away from me, but when we eat together he enjoys the break…or so I thought! Now I think I am just a source of amusement for him.
I came to this realization the other day. I analyzed his meal. I totalled carbs, subtracted fiber, guesstimated weights, and after a number of minutes came up with a total. He then said “I could have told you that without all of that work.” I laughed at him and said “yeah right!” and so the battle lines were drawn.
He swore that while I added, subtracted and multiplied, he just “knew” what he needed to bolus. As the competition began, I would no longer say the carb counts out loud (which I do both to help him learn and to bounce ideas off of him). I quietly would get my total and then ask him for his.
The first time we did this I grinned as I asked him his total. It was a large meal and there was no way to just look and know. He replied “129″. My jaw dropped as that was the exact calculation that I had arrived at. Darn, maybe he was onto something!
We did this a few more times–smoke rising from my ears as I did the math, and the calm coolness of Mr. “I just know”. He was usually within 5g of carbohydrates. I had taught him well or he eats the same on a regular basis but these meals were not his usual fair. I was impressed. His super carb counting skills came to a crash last night however. I asked him his guess while knowing the answer. He came up over 100 carbs too high!
I told him that he had just overdosed himself. Mom wins! He just shrugged in his usual manner and vowed to win the next round. We may have our downs but strange diabetes games like this bring smiles to both of us and make me feel a whole lot better because I see that he really is learning.
Sunday morning brought a vision that shocked me to the core…my son weighing his cereal!
I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again.
Now that may not seem to be a life altering event to many. It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?” He actually did this on his own! Did it result in perfect bg levels? I have no idea. Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.
That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before. At that point I was just irked that he hadn’t listened to me. I had told him to reduce his basal after exercise. I was positive that he hadn’t. Once again, I was up for an hour in the middle of the night after being ill the day before. Something was going to have to give!
I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!
Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him. He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone. He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.
We discussed the fact that exercise can have an impact up to 24 hours later. More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??
Over the holidays, my boys and I were sitting at our kitchen table enjoying an after supper conversation. My youngest son happened to look at a drug store receipt on the table and said “$160 for a month of test strips? That’s crazy!”
I quickly explained that sadly that did not cover a month’s worth of testing. I also reminded him that there was still the cost of insulin and pump supplies to add to that monthly diabetes care bill.
He was completely incensed. He was adamant that he would NOT be spending that kind of money on his diabetes care when he was older. This was insane by his calculation. No one should have to pay such crazy amounts to stay alive.
He decided that he would have to seriously cut down his testing when he was forced to cover his own supply costs. He informed me that when we went to diabetes events and he filled out cards, they always asked if he tested only a few times per week. He had to state that he was the child of an obsessive tester and tested closer to 10 times per day. My young son felt that these cards(geared to people with Type 2 diabetes) justified him not testing in his adult years.
I groaned and tried to explain to him that a lack of testing was not an option to consider. I had invested in a Disability Savings Plan for him and reminded him that it would give him some money towards his diabetes supplies when he was older. I also encouraged him to keep contributing and taking advantage of the free government money.
This did nothing to pacify him. He remained horrified at the cost of his care. He decided that it was the job of the government to cover his costs. If they did not pay for his supplies, he would die. It was simple.
I wish it was that simple. I wished that governments actually cared. His throught processes scare me at times. I pray that he does have good coverage when he gets older…and more importantly that he uses the tools available to him to keep himself healthy.
“You were really high last night. Did you forget to bolus something?”
“Mom, you know how I eat in my sleep?”
“Yes, I know that if I feed you, that you will chew without waking. What about it?”
“Well, I think that is why I was high last night! I am pretty sure that while I have been sleeping that Sweedums has been feeding me. You know, she is getting me a sandwich and making me eat it. She has probably been force feeding my some of my Christmas chocolate too!”
Oh my! Where does he come up with this stuff? “Perhaps if she feels the need to feed you at night, you could remind her to bolus as well?”
It may be a new year but somethings never change!
|The boy and his dog, Sweedums…she does have a guilty look!
Why did I get such perverse pleasure from my son freaking out about his blood glucose dropping and my relatively cavalier attitude? Because this week brought us back full circle to Mom freaking out at him and him basically wishing that I would simply go away or at least give up the rant.
Once again, I looked at his meter. Once again all of those readings that he supposedly had but could not remember five minutes later were because HE DID NOT TEST!!!! Once again I lost it. Once again I yelled. Once again I told him that I HATE being lied to. Once again I said that he cannot be trusted. Once again I wanted to sit and cry. Once again I worried about the future.
I still want to cry. I still am frustrated. I still hate diabetes more and more. My son is a teen. I get that. He has a serious case of “teen brain”. I get that too. He is not my first teenage son but thankfully he is my last.
I hate that no matter what diabetes is there wreaking some sort of havoc in our lives. There have been a lot of changes in our lives recently. I have a lot of other “stuff” on my mind. I am trying to create a new business. I am dealing with new budgetary issues. There is Christmas coming up, my car that needed brakes and tires and so much more of life’s daily challenges. I really did not have a lot of time to sit and hover over my son to make sure that he was testing when I asked. It would appear that I needed to make time but… I DON’T WANT TO!!
I am tired of being the diabetes police. I am tired of testing, bolusing and counting carbs. I am tired of waking up in the middle of the night and convincing myself that I do not want to roll over and go back to sleep. What I really want to do is to get out of bed, wander down the hallway, find my son’s glucometer and test him.
No I don’t!! I want to have a “normal” life. I want to worry about him being happy. I don’t want to have to be the one to remind him that when he looks at his budget in career class, he needs to make sure that he can afford the extra $400+ per month required to keep him alive. I don’t want to be the person to say “I don’t think that career will pay you enough.” “Do you think you will have good medical benefits with that job?”
These aren’t conversations that I have with my other son. My biggest concern with him is that he spend all of his money on restaurants and exotic groceries.
We have been doing this diabetes thing for almost 13 years. Some parts are easier…and some parts remain frustrating. Despite that, I am done. I am tired. I want off of this ride. We have been on it for too long and knowing that my son will never get off tips me closer to the edge.
Once again I rant and scream. Once again it will change nothing. Once again I will breathe. Once again my son will test in front of me. Once again I will pray that he truly “gets it”…one day.
Its weird. When we get our A1c, I hate telling other people what it is. We work hard but I know a lot of other people who work hard too. We use a pump but they use a pump too. The only CGM we have is our own regular testing. Despite all of this, I have friends who struggle to see an A1c under 8. We have rarely, in twelve years, seen one over 7.
I have no delusions of this lasting forever. I know my son will hit his own walls when Mom is not around. I know that I have provided a cushion for those years however. I have been told this cushion may help him during those rough years reducing the chances of complications. I pray so.
Despite that fact, I rarely publicly state his A1c. I feel guilty because we succeed where others struggle. I don’t see us doing anything different. Maybe we are just lucky.
My son actually sees diabetes has relatively easy! That scares me. He says,
“its simple. You count the carbs. You give the insulin. You test. You adjust. What is the big deal?”
Wow. I know its not that simple but perhaps it is good that he doesn’t see it as that big of a burden or a problem. I know he sees it as an annoyance. I know he sees it as something he would rather ignore but it does not appear to be a “challenge” to him. It is simply his life. I guess that is one thing to be grateful for.