Category Archives: parenting a teen with diabetes

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.

Gifts like this make me realize that all is very well indeed.

Looking from a distance

Diabetes Blog Week
Today is Saturday’s snapshots. At first I was a bit troubled by this.  What does my life with diabetes look like these days? Well its different than even one year ago.  Should I show pictures of my son’s life? I decided that I shouldn’t.  My pictures would be of my life with diabetes…living with it at a distance.

Now when I find test strips at the bottom of my purse, I don’t swear and wonder how they got there, I think of my youngest son and smile instead.
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My conversations are often done via text rather than in person…

















IMG_1494But we still get a chance to spend time together and share care when we can.

The Countdown to NO SLEEP!

This morning as I woke up, my first thought was…”This time next week I will have been up during the night to check my son’s  bg levels!”  I know that parents who do this every night will be thinking that I am insane but I am actually looking forward to it.

It has been over six months since that fateful day when my son moved back to his home town to live with his father and left me with an empty nest.  I still have a barrage of emotions that flow through me at any given time.  I have been a full-time mom for 20 years and a pancreas for 14.  I felt like I was terminated without notice.  I wasn’t. It wasn’t personal. It was a choice he felt that he had to make for his own growth. That has been something that I have had to come to terms with…and am still working on.

When my son left, I had a firm plan.  He would be in contact with me weekly.  He would share his readings with me thanks to his new insulin pump system.  We would look over readings and he would learn how to make his own decisions. I would remain as hands on as possible with hundreds of miles between us.

As with all of my plans, it was a great plan.  As with many of the plans that we make in our lives…well it was a great plan but reality was far different. The first month or so we would call each week.  He had issues with uploading his pump information but sometimes it worked.  There would be a lot of missed tests. I would do my best not to freak out and ruin our time together.

Soon he saw his new diabetes team and they had their own plan.  They arranged for my son to see a new educator on a regular basis to teach him how to handle his diabetes care.  Two teachers would confuse the issue.  My friends reminded me of how much I had taught my son over the years.  I had to step back.

I would be lying if I said it was easy to do. I have been a hands on parent for 20 years. I have been a pancreas for 14. I am a control freak. Letting go has always been really hard for me.  Letting go of something that directly impacts the health of one of my children?  Yes, the pain of doing that was physical but I have tried. 

I no longer ask about bg levels every day.  I ask about once a week how things are going.  I ask if we need to have a chat. Does he need to make any changes to his rates? Our weekly chats have drifted further and further apart to the point of the occasional text message that reads “CALL YOUR MOTHER!!!”  Followed by a phone call, a wonderful conversation and said child responding “What do you mean I don’t call you? I call you every day.”  I reply “in your dreams. We haven’t talked in ages.”  To which he charmingly replied, “Oh, well I think about you every day.”  My children are smooth and have figured out how to appease a mother’s bruised heart.

Like I said, the “we will talk weekly” rule quickly was disregarded.  We text daily. I know that he is alive.  He has a life that involves girls, skidoos/quads, friends, and school. Mom and diabetes are relatively far down the list because let’s face it, they will always be there (at least in the mind of a 16 year old). 

Occasionally I will tell him that it is time that we chat about his readings. Recently I was struck by the similarity of me saying that and that note on the calendar stating you have to see your diabetes team–tomorrow! When I tell my son that we need to chat and review readings, I instantly get inundated with excuses.  “Well, now isn’t good. I had a bad site the past few days and my readings are everywhere.”  “I forgot to bolus my breakfast and was high so things are really out of whack.”  There is always something but as a great friend reminded me, he knows the whys behind what is going on.  This means that he has learned.  He will hopefully also learn to apply this knowledge but for now at least in hind sight he can say, “Mom, I messed this up and this is what happened.”  I guess in the world of diabetes care that is a bonus.

So for today I will count the sleeps until I have sleepless nights for a few days. I will enjoy counting carbs and monitoring testing patterns for part of the Easter holidays.  After that, I will go back to adjusting to my children growing up and being independent.  I will sleep through the night and know that I have taught them well…and pray that a Higher Power will keep an eye on them both when I can’t.

 

Do not clean with soap and water

Today my phone went in for a cleaning. It wasn’t supposed to be cleaned but somehow it stayed in my pocket when the item I had been wearing before my shower went in to be washed.  Something told me to check my pockets before tossing it in soap and water but in my morning fog I forgot.  A little while later, in a bit more of a panic, I checked the now wet pockets. Nothing in the first pocket! Perhaps I was safe.  I checked the submerged pocket…it was heavy.  That could be water weighing it down…Or it could be my phone.  Crap!

I began drying my phone, watching the screen flicker, wondering what I will have lost this time since I hadn’t backed it up, and finally pulling the battery and sticking it in a bag of rice.
I am not sure if my phone will survive. Part of me says, “Yes it will! I caught it early. There wasn’t much dampness in it. It will be fine!” Another part says, “Dude you are screwed! There was some sort of red dye that I wiped off when I was drying it. I am guessing that is one of those markers that tell manufacturers that it was submerged. This is not good. ”

Yes, I wanted a new phone. My phone has been acting weird and basically annoying me for months but I want the latest iPhone. I don’t want the current version when a new one will be out a few months after this one. I don’t want to pay for a phone this month that in two months will be free because it is now the older generation.

I won’t get ahead of myself. For now, I remain phone-less for at least the next 24 hours. That feels weird. I have had a cell phone for 14 years now.  It was an essential part of our life with diabetes. It allowed me to be away from home and still in reach of my children or any adult supervising my children. It allowed teachers to call and ask me a question whether I was at home or in a meeting or grocery shopping.

As we learned to text, it allowed my youngest son to send me messages about bg levels or issues he was having when he was away from me.  It allowed me to keep track of what was going on with his diabetes care no matter where either of us were.

Being phone-less means that I can’t do any of these things…at least not as easily.  Previously this situation would have thrown me into complete chaos.  While I am going through personal withdrawals because I like to text someone when I am thinking of them, it is not the catastrophe that I would have once thought it was.

There is a land line that people can reach me on if a life threatening issue arises. I have access to email and online accounts if someone needs to reach out.  I may not answer these questions while I am shopping or running errands but I will get to them at one point.
I am not panicked because my kids cannot immediately call or text.  They can still contact me. They can take care of most issues on their own…even the diabetes related ones.  That is scary! It’s not scary that they can handle things, its scary that I have reached a point that I know that they can! They are not just growing up but I am learning to let them fly!  

It still feels very weird not having my phone (and it has only been two hours!) but it is equally wonderful to know that my kids are okay on their own.  I no longer have to be there to walk them through emergency site changes or trouble shoot a high. My youngest has got this…most of the time and for those other times, well, we will talk about it when we get the chance. 
wet phone

Five Tips to Surviving Raising a Child with Diabetes

This month marks fourteen years living with diabetes. They were not easy years. They still are not easy.  Each year has its own challenges–sometimes it seems like each day has its challenges!  I have had some amazing supports throughout the years however. I found a family online, some of whom I have met in person and some I still hope to meet one day.  They have helped to keep me going–offering support, words of encouragement and the occasional kick in the bum to send me in the right direction. 
 
I thought it would be a great time for me to share with you a few of the tips and tricks that have kept me marginally sane and allowed me to get up each day. 
 
1. It’s okay to cry.  We all have our moments. We can’t carry the full burden of worry and care. It’s okay to breakdown now and then. Do it in the shower where you can scream at the top of your lungs.  Allow your child to scream too.  When you are both exhausted, hold onto each other and look at how best to move forward together.
 
2.  Find people of a similar nature.  Meet people online or in your community who get it.  Seek them out, ask them how they handle things and simply enjoy being around other people who get it.  Allow your children to spend time with these people as well so that they understand that they are no alone. 
 
3.  Take a day off. As a parent, take time for you.  Leave your children with you someone you trust and focus on you for a few hours or an entire weekend.  It will be hard at first. Diabetes will be in every other thought.  Push it further away until you can slowly feel the weight on your shoulders lift just a little.  Feel the tightness in your chest relax just a bit and breathe.  Give your child with diabetes a day off as well. Test for them, bolus or inject for them, and count their carbs.  Let them just be for a day.  They get burdened as well. Let them have that small break without nagging or worry. 
 
4. It is okay to punish your child for not doing diabetes related chores.  This one was huge for me.  As a parent, we carry some guilt when our children are diagnosed. We are to protect our children and somehow we failed and they ended up with diabetes.  No this isn’t logical but being a parent isn’t always about logic.  This is just how we feel. This feeling makes it very difficult to lump testing their blood glucose levels into the same realm as making their beds.  It isn’t but it is in the same realm as having a bath and brushing their teeth!
 
Diabetes sucks. We all agree but this is the hand that we are dealt. Testing bg levels and somehow injecting insulin into their bodies is not negotiable…to a point.  As parents we may have to come down in our expectations of how often our child will test and we have to remember that occasionally they will be feeling so “normal” that they may forget to bolus.  It is important that we find a balance between our ideals and what is safe. We then have to remember that we can say “Since you did not test at least once when you were out with your friends last night then you will not be allowed to go out with them tonight.”
 
5. It really isn’t our disease.  If we are not the ones living with diabetes, it is not our disease. Even if you do live with diabetes and your child has diabetes, it is still their disease.  That is an incredibly hard concept to deal with! We want to take this burden from them. We want them to do it our way because we have been learning for years and we know best…but none of that will happen.  We will hope that most of what we have told them will sink in.  We pray that we will be that little voice in the back of their head when they are about to do something stupid.  We standby ready to pick them up and help them when they stumble along the way, but we somehow have to let them find their way.
 
For me, the last point is the hardest.  I do not want my children to have to learn the hard way.  I don’t want them to stumble.  I want to protect them at all costs…but I can’t. I have to let them fly.  I have to be confident in all that I taught them. I prepared them to be on their own.  They are smart. They are good children.  They are a reflection of us. 
suriving D

Back Away from the Pump. Its NOT your toy

At the end of August, my son got a new pump. We had been lovers of the Cozmo pump for over 10 years.  It physically hurt to have to put it away but with no warranty and a child living hundreds of miles away, it seemed best to make sure that he had a pump with a company still behind it if he had any issues.
 
We both shed a few tears as we put his beloved “Lean Green Pumping Machine” in a box and brought out his new pump.  When we sat down with his pump trainer, the trainer dealt with my son. Mom stayed in the background.  The trainer talked to him when going through how it worked. My son is too big for me to hover over his shoulder so again, I just sat back and let him learn. It felt a little strange.
 
After she left, he let me touch the remote bolus and test drive it a bit.  Soon though, it was hands off. I could touch it at night if he was out of range but that was it. I had not other reason to use it. If there was a change to be made, he did it. If there was a site change to be done, he did it.
 
As time went on, I used the pump less and less and I began to put it out of my mind. This was not my new toy to check out. It was his.  When we had a problem, I grabbed the manual to help him figure out where to go but again, I checked a book while he was six steps ahead of me navigating through the pump screen itself.
 
It has been five and a half months since my son started on his new pump and now I can barely figure out how to bolus him with it. On the other hand, he has no problem making corrections, adjustments or anything else required.
 
A few weeks ago, a friend and I were talking about new pumps for our kids. Her child is also holding strong to her Cozmo but they know that a new pump needs to happen sooner rather than later. I casually told the mother not to be concerned about the pump that her child goes on next because she won’t be playing with it. It will be her child’s pump and Mom doesn’t need to know how to operate it.
 
She thanked me.  We have been so used to handling everything, checking out each device, and learning on an ongoing basis that as parents, we can forget that this isn’t our disease. When our children were 2, 3 or 5, this was our disease no matter what anyone else said. Now that our children are 16, 17 or 20 we have very little input.  We have been relegated to the sidelines whether we wanted to be or not.  We can make suggestions. We can nag a little but our children are now young adults who will do what they feel is best. The only thing we can now hope for is that some of what we have taught them along the way has found a home in their own thought processes. It’s a huge step but we can all do this with one foot in front of the other…and back away from the pump. 
animas-vibe

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.
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No this wasn’t his 60 CHO meal honestly 🙂

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.
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The Importance of Learning

Time and time again, the importance of the Diabetes Online Community has been mentioned by myself and others.  It is an incredible place to share ideas, share accomplishments and troubles, and to simply learn no matter how long you have been at this game.

I wish my son was more involved but he remains one of the few teens in the industrial world who has minimal interest in technology and social networking. He has a FaceBook account that he reads on occasion. He almost never adds comments or posts a status. He will never send a tweet or a friends request.  He occasionally “meets” new people on his XBox but even that is minimal.  I have had friends in the DOC whose children have “friended” him but I do not hear of many conversations between them. That may change over time.  I can’t say. In the meantime, I continue to interact with friends and learn for the both of us.

The importance of continued learning struck me the other day. A good friend had asked a question about the best way to deal with a high protein meal.  She is well versed in diabetes care but was being troubled by how protein was creating havoc in the bg levels of one of her children.  With great interest, I read through the many comments and suggestions that she received.
I realized that we had had a similar issue with my son. If he had lobster for supper or a steak and salad, I was often at a loss as to the best way to proceed.  One person with diabetes stated that she didn’t bolus for protein but she would temporarily increase her basal rate.  That made a lot of sense to me and seemed relatively easy to try.

The next time that I spoke with my son I told him about this revelation.  He asked if it would work for a bacon and egg breakfast because he loves a good pan of bacon and eggs in the morning.  I said yes! The amount of added basal and the time to extend would be something that he would work out for himself but he really wasn’t adding a lot of insulin to his system at any given time.
He thought this was a great idea. I was impressed that he took the knowledge and was open to learning how to incorporate it into his own diabetes care.  He is being given a lot of information at the moment but I am proud to hear that he is also listening.  He has told me of some things that he thinks the educators are a bit out to lunch on.  I reminded him that this is his disease.  He needs to take in what they say, weigh it against what he knows about his own body and then go forward.  They may have great advice but it may not work for him. If he knows this in advance then its okay to say that it doesn’t work for him. If he hasn’t tried it, give it a shot, he just may learn something new!

Its a new road for both of us but I think we will make it one step at a time.
coblestones

Watching the Stumbles from a Distance

My son has been living with his father now for two full months. I still walk into his room and hope to find him there. I still find used test strips in strange locations. I still wake at night thinking that I should get up and test him but it is getting easier. I am slowly learning to adapt.

I keep in touch with both of my boys on a daily basis. I still worry about both of them.  I worry about the troubles that can find young men. I worry about many things that a parent will concern themselves with but I don’t obsess over any of it. I focus on how strong and independent they are. I pray that they always remember that I always want the very best for them.

My youngest son has been great about uploading his pump and touching base with me once a week to discuss his readings.  I have worked very hard never to freak out at the lack of testing. I don’t scream at him when I see high readings.  I normally just ask for more data. We discuss how different meters are functioning and talk about how to handle bad sites.

Stepping back and letting him make the decisions is very difficult.  It’s not because I am a control freak (although that has had its challenges), it’s because I am a Mom.  I want to protect my children from all ills. I failed him once by allowing him to get this disease. It has therefore been my job to protect him from the ravages of it.  That’s how a parent thinks.

Yesterday my son and I talked about his readings.  Once again I did not scream. I did not cry–but boy did I want to! I looked at the very few readings (maybe two per day) and saw none of them in range.  All readings were incredibly high (a low reading was 14 mmol or 252 mgdl).  My mind’s eye saw nothing but kidneys breaking down and eyes being damaged.  I quickly reined in my imagination and remembered the concept of metabolic memory.  I had prepared for this day.  I had kept him in excellent control his entire life.  The theory was that it would protect him through this time as he stumbled and found his own stride.

Instead of showing my obvious distress, I reminded my son that he felt bad when he was high. I asked him a few questions about his readings–”how long before you tested did you eat? So you were probably high for at least four hours previous.”  I then set to work. I was nervous about making sweeping changes with so little data but I had to do something! I upped his rates almost across the board.  I suggested that he might want to try to test a bit more so we could get a better idea of where we stand and help him to feel more like himself. I left it there.

This would have to be his decision. He had to decide to look after himself and make testing a priority again.  We had met for dinner a month ago when I was near the town that he now lives in.  I watched as he began to eat without testing. When I questioned him, he quickly took out the pump remote, tested and stated that he had forgotten because he was just so hungry.  Perhaps that was the case but the data I have been seeing suggests that he just often doesn’t bother to take the time to test most of the time.  He remembers to bolus however so I will be grateful for the things he does do.

I praised him for giving me the truth about high numbers. He was not using the pump remote for most readings so he could easily have lied about the 20 and 30s (360-540+) that I was seeing on his upload.  I said that it was great that he was showing me these.  We would work together to bring the readings more in range.

I have no illusions that things will change after this latest talk.  We had a similar one a few weeks ago.  That reality is what sets me on the edge of tears.  He will see his diabetes team next week. I pray that they will help him see sense but again, I doubt it. He is 16.  He knows best. He will have to learn on his own.  One day he will hopefully realize that I was trying to keep him healthy.

I have spent the past 13.5 years teaching him how to take care of himself. He has the tools.  Watching him not use them is heart-wrenching.  Many adults with diabetes and parents with older children tell me that this will pass. One day he will remember all that he was taught and will get himself back on track.  I do believe that–I have to.  The hard part is waiting for that to happen and in the meantime standing on the side lines watching, guiding, and praying that the scrapes are no more than that.

My son is a good kid–both of my children are.  They have never brought any trouble to my door. They have never been involved in any serious and dangerous behaviors that I know of.  They have always been quite respectful of me and as I said, all around great children.  Diabetes just adds that extra layer. It’s like that best friend that you really don’t want your kids to hang around with but they think he is the best thing going.  You know the dangers that he can cause for your child and they think that they have him under control.  Daily you pray that they are right…but it is terribly difficult.

I will continue to monitor my son’s long-time friend called diabetes. I will work to prevent as many scrapes as I can. I will be on the sidelines encouraging him to find his own stride and remembering that no matter what I have done in the past, this is his disease to learn to manage.

Liam Oct 1998