The Bad and the Ugly

No longer having children live at home means that I don’t have to worry about school schedules. I don’t have to concern myself with getting teens out of bed that would rather sleep.  I don’t have to make lunches.  There is a great freedom there.

Having children who don’t live with you does not free you from worry.  My oldest son makes a 9 hour journey by car every 10 days to go to work. I stress as he drives home for his days off. I stress as he drives back to return for his next run of work. Some times my worries are even warranted.

The other night he had vehicle trouble. I sat by my phone all night until I knew that he was safe.  I felt bad for him.  He had to get up early for work.  I was able to try to catch an extra hour in the morning….or so I thought.

I have two sons and at 7am I heard from my younger son.  He was vomiting.  What should he do? When my boys are sick, Mom is still the first one that they call.  I asked him what his bg levels were? We needed to know if we were dealing with a tummy bug or a really high blood glucose level.

He told me that he couldn’t check. He was throwing up too much.  To prove the point, he sent me a picture.  You have to love boys!

Eventually his stomach relented and allowed him to test.  No bug, he was high, like super high, like “HI!” from a cheerful meter kind of high!  I hate that kind of high.  We went through the protocol….

Inject yourself with insulin.

Change your site.

Change your insulin cartridge.

Check for ketones.

The protocol took over an hour to complete.  He was throwing up and upset by the mess that was being made.  He was alone in the house and having to do everything himself.  My heart was aching.  This is the bad part of having your children move away.  You can’t take over and let them just be sick.  I continued to walk him through what had to be done.

Sleep was now impossible. I got up as I waited to hear what stage he was at.  Insulin was in. Thank goodness! Now at least his body had something to work with.

New site and cartridge were done.  One more step towards normalcy!

Now to stop the vomiting and get some recovery.  He had no gravol or any other anti-nausea medications.  He did find some fluids and worked to keep them down.

He found his ketone meter.  The results were in the “holy crap” category but just under the “you can’t do this alone. Get to the hospital now!” category. “Insulin and water” he repeated. “Don’t forget the test a lot until you have in range readings and no ketones.  Also, do NOT sleep.”  He told me that sleep was not an option.

We continued to stay in contact.  He continued to take charge of his care and get things sorted. I continued to hate diabetes for making him have to be so responsible at 17. We both survived. That’s the main thing….

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So much changes when you are 18 and have diabetes.

My son is 17. That in itself is a shock.  How did my baby become 17? His older brother has been in the work force for a few years and now owns his own house.  Again, how has any of this managed to have happened so quickly?

When your child is born, they tell you to savor each moment because time will pass faster than you could imagine. Some days, when your children are small, the days can’t pass quickly enough. You try to hold onto time as much as you can but despite your best efforts you wake up and have to plan for the graduation of your youngest child.

I have my son’s graduation ring purchased.  We will get his pictures done in the coming months.  There will be a suit and shoes to buy that he will either purchase with me or with his father.  There is planning for what school he will attend in the fall and registering for programs.

That is where the normal part of being 17 ends.  Being a person with diabetes who is 17, there are other things to consider as well. He is counting down the number of appointments left with his childhood endo. He will be turned over to a different doctor when he turns 18 in the fall.

He doesn’t think about it but he only has 8 years left under our provincial insulin pump program.  I worry about what sort of benefit program he will have in his chosen field. I will be looking into it soon…just in case.

Because my son will be 18 in the fall of 2015, his Disability Tax Credit certificate will also expire.  In order for him to continue to own his RDSP, I have to ensure that a new DTC application is filed and approved within the next year.

The last year of high school. So many wonderful memories but when you are a child with diabetes, there are also so many new changes to consider.  New schools, new doctors, new insurance issues, new responsibilities. Where did the time go? happy18thbirthday

One School Year Down….

Last September, June seemed so far away.  As my heart was breaking to watch my son go off on his own, he reminded me that it would only be for two school years.  That seemed so long but we have survived the first one.

Somehow I managed to get through an entire school year living in a different city, in a different part of the province from both of my children.  My youngest son managed to handle blood testing, site changes and doctors appointments without me there to organize it all.

With summer finally arriving, my son is more confident in his own care.  I don’t often ask what his readings are.  Even when I do, the answer I always get is “Fantastic!”  I have no idea what his last a1c was.  He handles most of his supplies, refills, and life with diabetes on his own now.

There will be no break for him over the summer. He plans to work in the area where he is living so his trips to see me will be short at best. Our lives have changed.

I now sleep a little easier at night. I still fear for him but I can’t do anything about it when we are so far away so I just have to have faith that all will be okay.

I allow myself to sleep in in the morning. I don’t count the carbs in my food as often as I once did. I still notice pumps. I still keep on top of the research going on in the diabetes world.

I still wonder what my new role is now that job as full-time mom and pancreas has taken on very different hours. Instead of being on the job 24/7, I now remain on call at all hours.  Oddly, that is less demanding and the stress is what you make it.

I have found a new focus…well refocusing on an old issue.  I offer my experiences to those who are interested.  I still find myself at a loss some days wondering who I am now.  It’s a very strange feeling that is hard to explain to others.

I will find my way. My son is finding his.  Our roles are a little different but my children are learning to fly on their own…and they seem to be doing well.  What more can you want?

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Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more.

It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.

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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. 

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Five tips to Surviving Raising a Child with Diabetes

This month marks fourteen years of 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 have been there and done that.  Allow your children to spend time with these people as well so that they can understand that they are not 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 when they get 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.

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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 🙂

Its 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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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.

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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.

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.

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