Tag Archives: parents of children with diabetes

It’s okay to cry…or scream..or just take time for you

diabetes is hardDiabetes is hard.  Whether you live with the disease or you are the parent of a child with diabetes, diabetes is hard! I know, I said it twice because it is true. It can be exhausting and overwhelming. There is never truly a time when you can relax and say “whatever will be will be.”

There are times when you want to relax. You want to throw in the towel.  There are times when you want to simply say “ENOUGH!!!” and hide under the covers for a the day.  I am here to tell you to do it! Seriously, take a minute or an hour or a day and just throw in the towel so that you can pick it up again with more strength than you had before.

It’s in your best interest and the interest of those you love to take time for you.  Take time to just let it all go.  Here are five easy ways to reset yourself so you can continue on your journey with diabetes.

1. Hide out in the shower.

The shower is an amazing place.  You can lock the door.  The water pouring over your body can be calming and soothing.  It washes away your tears gently and without judgement.  The sound of the running water also drowns out your anguish.

When things seem bad…When you are tired and just want a break… take 5 minutes and hang out in the shower.  Cry or vent.  No one needs to know. No one needs to see.  You can simply let out all of that pent up anxiety  and allow it to flow down the drain.

After you are finished crying and yelling, you can dry off and get on with your day!

2. Go for a walk.

Ideally, go for a walk by yourself but if you can’t take the kids and just go!  Power walk at first until you have spent all of that stress and tension out of your body.  Let all of your frustrations be released in your strides. Slowly let everything go until you can slow down and enjoy the scenery.  Breathe and just let it be.

Your heart will thank-you and so will your psyche.

3. Pass the buck.

Whether you have diabetes or you are the caregiver, let someone else deal with things for an hour or a day.  Let them do the testing and the injecting. Give the meter or CGM receiver to a trusted companion or family member for a bit.  Allow them to deal with things in their own way.  Allow yourself to forget just for a bit.

It can be hard at first.  Diabetes is so all consuming but it can happen.  Don’t be concerned if the other person is  doing things differently than you would.  Let go.  As long as no one’s life is in danger…let it go.

I have done this for my son before.  There would be a day when I would do all of the testing, bolusing and carb counting. He would simply hand me a finger or his pump.  Diabetes was not something that he was going to actively concern himself with managing for that time period. He loved the break.

4. Enjoy a date night.

If you are a parent of a child with diabetes, this is super important.  Make time for you and your partner.  If you are single, then make time for you and your close friends.  Take time once a week or at least once a month, to focus on relationships.  Leave diabetes in the hands of someone you can trust.  Do not spend all of your time looking at your phone or texting home.  Focus on enjoying yourself and recharging your batteries.

5. Meet up with other D-peeps.

This one may seem a bit strange.  If you are overwhelmed by diabetes, why or why would I suggest that you hang out with other people who are just as stressed as you? Because they get it!

Seriously, meeting another person who lives with diabetes can be so liberating.  They truly do understand carb counting and pump problems.  They  are the ones who understand the A1c report card and so many other aspects of your life.

Go to conferences, events, or socials.  Talk to that co-worker who also has diabetes or that Facebook friend you met in a group.  Share with each other.  You won’t just talk about diabetes but they will understand that diabetes factors into so many other aspects of your life.

These are just a few things that can help to relieve some of the stress of living with diabetes.  There are many other things that you can do.  If you reach the point of feeling completely overwhelmed, please consider talking to your doctor or a therapist.  Diabetes is hard.  You need supports.  Make sure you find them and use them for the sake of you and all of those who care about you.

Six things not to say to parents of children with diabetes

things you dont say to a parent of a child with diabetesPeople generally mean well but sadly many just don’t think before they open their mouths.  I therefore thought that it might be a good idea to create a little list for them of thing that you really should NOT ever NEVER say to parents of children with diabetes. Consider it a personal service announcement if you will…

My cat had diabetes

Really? Seriously? Because we know that you injecting your cat’s fur with insulin is really identical to chasing a toddler around the room with a syringe,  pinning them down and explaining that you are stabbing them for the fourth time today because you love them.  Yes, I am sure they are exactly the same.

Yes, there was an eye roll here.

My great-aunt Thelma died of diabetes

Thank you.  I needed to hear that.  I have guilt on top of guilt about not protecting my child from this disease and you tell me that your 90 year old aunt died because of diabetes?

Odds are that she had Type 2 diabetes and at 90…well her odds weren’t the greatest for lasting long anyway but yeah, I can see where I needed to know this.

This is why parents of children with diabetes have bruises on their heads. They spend a lot of time banging it against a wall in frustration. .

Don’t worry. I am sure that your child will grow out of it.

The odds of my child outgrowing their diabetes are lot  less likely than as you overcoming your ignorance of what type 1 diabetes really is.

Nope, growing out of diabetes is not an option.  My child’s pancreas is just no longer doing its job.  We have tried everything we could to revive it but its dead. Gone. No functioning beta cells to produce insulin.  No hope.

On the upside, I would really encourage you to do a bit of Googling or even ask some questions of me and then listen.  Truly listen to what I will tell you and you might be surprised at what you can learn. Your ignorance can be cured!

Perhaps if you hadn’t given your child so much sugar, then he/she wouldn’t have gotten diabetes.

Perhaps if you had not thought that they said “trains” when they were handing out “brains” and decided that you didn’t want to go for a ride, you would have a bit more of a clue.

Having a child with diabetes brings enough guilt.  I fret over what I could have done. I berate my faulty gene pool for allowing this to happen to my baby. Despite these things, I did not cause my child to develop diabetes. What my child ate had nothing to do with his diagnosis.  Really.

Would she prefer a diabetic chocolate?

Eeeekkkk!! Run! Fast! Actually if you eat many of those chocolates you will have to run fast–to the washroom.  Many diabetic candies are filled with sugar alcohols that can cause diarrhea.

Thankfully, my child is able to balance insulin injections with food intake so regular candy is just fine.  We do appreciate you trying though.

Perhaps you may want to relook at how many of those candies you have as well.  I kid you not.  They are nasty!

Is their diabetes under control?

Control? What is that???  A parent of a child with type 1 diabetes is trying to keep a blood sugar fluctuation of .54grams per liter on a constant basis despite over 25 influencing factors trying to mess with things.   Imagine that…trying to maintain a balance of less than one gram of sugar with the influence of stress, food, exercise and 20+ other things!  Can you see why  as parents we simply celebrate when they get even two readings in range?

It’s a big deal.  Diabetes is a really complicated disease.  Most parents of children with diabetes are doing their very best to balance allowing their child to be a normal kid and trying desperately to manage blood sugar levels so that their children feel healthy.  It is a huge challenge.

Parents of children with diabetes appreciate when you care.  Really we do, but please, please, please, think before you speak!

There are certain things that you really truly should not say to parents of children with diabetes.  Offer them a smile, a sympathetic ear, a kind word even.  Honestly, they are much more appreciated.

Diabetes is hard! Some days you’re the windshield…some days you’re the bug

This post was originally written in 2009.  My son now manages his own diabetes care .  He wakes for his lows.  He treats his highs but one thing remains the same–diabetes is hard no matter who is responsible for care for the daily tasks. 

Diabetes is hard

“Some days you’re the windshield, some days you’re the bug.” Today I am definitely feeling like the bug!

It was after midnight and of course I was dying to get to sleep. I had set my alarm for early the next morning.  It would be my son’s last day of school.

I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away and was off to test my son’s blood sugar level. I hope it would be the last check for a few hours. One check and I could sleep!

We had been out for pizza earlier that day to celebrate good grades so I was certain that my youngest son would still be high. He had been  16 mmol (288) earlier in the evening  so you know I was certain that I was  going to be able to rest.

Wrong! Diabetes doesn’t work that way.

I took the meter. I lanced his finger  and created a pool of  blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. The glucometer just barely accepted the blood. I waited for the reading…E5. It was an error reading!! There hadn’t been enough blood to get a blood sugar reading. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs to get new equipment.

I found a new meter. I was certain that this one had to be better than the last. A new test strip was in my hand. The same lancing device was being used. Back up the stairs I went.  This time I grumbled and picked up items as I went.

Once again, I lanced my son’s finger. Again, I got a large amount of blood. The strip sucked the blood  this time! I walked towards the stairs not even considering having to correct a high blood glucose reading. That was a good thing because he didn’t need insulin.  He was 3.2 (57). He was low!

I uttered a few more choice words as I shuffled off to get some juice. I filled a glass, found a straw and trudged up the stairs for a third time in less than five minutes.

My son wasn’t keen on drinking. I continued to cajole him until he finally began to  sip. Thankfully he drank it all except the last few drops. Those were sucked up into the straw and somehow flew all over his pillow.  I was not happy.  There was now strawberry juice all over a cream pillow case.  I cleaned it off as best as I could and  waited.

Fifteen minutes can become a lifetime when you are dying for sleep. These are the moments when you just think to yourself…diabetes is hard.  Why us?

Eventually it was time to retest.  He was  5.5 (99) and I was finally off to bed for two hours before it would be time to test again.

Diabetes is hard.  Diabetes care is a challenge.  Some days things seem okay…and other days you feel like you are a bug squished against a windshield.

 

 

I don’t have diabetes but diabetes can still bring me down.

Diabetes is exhausting.  The emotional toll of test, calculate, bolus is incredible. I am lucky.  I don’t have diabetes, but diabetes can still bring me down.  Because I don’t have diabetes, when it does tend to be too much I can step away,  put it on the back burner and regroup before I dive  in again. I wish everyone with diabetes had it that easy.

For years I was my son’s external pancreas.  It was exhausting.  I never slept more than four hours at a time.  If I woke up during the night, I tested his blood glucose levels.  We had no CGMs.  We just had me. It was my job to make sure that he was in range.  I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.

My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16.  At 16, he decided that he could handle it all.  He carried the entire burden for the next three years unless he was visiting me.  When he was with me, I took over as much as he wanted.

Taking over wasn’t the same as doing it 24/7.  That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day.  Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.

I  still wish that I could take the pain away. I wish that my son would know a different life.  There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting.  Their very lives depended on it.

As I  brush away those feelings, a new sadness often creeps in and diabetes can bring me down again.  The new sadness often comes from   my advocacy efforts.

Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas.  I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes.  This means that I also am exposed to the worst in the diabetes world.  People come to me when they are struggling and don’t know where else to turn.

Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me.  The problem for me arises when we can’t see a perfect resolution.  I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t?  Diabetes can bring me down.

At some points that sadness because I can’t fix it has been overwhelming.  Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena.  During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.

I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back.  Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.

I don’t have diabetes.  Diabetes can still bring me down but it never keeps me down.  Each day I wake ready to work a little harder.  Each day I will share what has worked for us and hope to inspire and assist others living with diabetes.  I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level.  Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.

A Salute to the D-Warriors

d childBack to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.

My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.

After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

 

3 Tips for Parents of Newly Diagnosed Children with Diabetes

I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday.  That being said, it was an easy question to answer and comes in the form of three pieces of advice.

First and foremost, live your life four hours at a time.  Do not worry about six hours from now. Do not worry about tomorrow.  Live life in four hour time slots–nothing more.

Chances are high that your child is using a rapid acting insulin. They basically last four hours.  Look at readings inside the four hour window.  Look at food and activity in that four hour period.  If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve.  What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?

Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.

My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them.  Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour.  You deserve the break.  You cannot be the very best external pancreas that you can be without a break and an outlet.  Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.  Its okay to do this.

Finally, cry in the shower.  Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.  Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt.  Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.

You can do this.  There will be bumps.  There will be victories.  The landscape of your life, and that of your child, has changed forever.  This doesn’t mean that he/she will never achieve their dreams or live a long and full life.  It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times.  Life will be different but it can still be amazing…just four hours at a time.

crying in shower

Another Night, Another Battle with the DMonster

3:15am.  I looked at the clock and began to do the math. How long was it since my son went to bed? What would his bg level have been? Do I really need to test yet or was it too soon? My bed was comfy.  It took me forever to fall asleep.  Did I need to get up or should I sleep another hour?

I figured that he had probably tested around 1am but something still made me drag my tired butt out of bed. I made sure to not be fully awake. No major movements to disturb the still sleeping parts of my body.  All would be fine. My mind would be appeased and I could go back to bed…or so I would have liked but the meter said differently.

He was 4.3 (77).  Not ideal for sleeping in my world.  I quickly woke the rest of my body and my brain began to fire on a few more cylinders.  It was time to find some glucose! I went to the fridge and for some reason it was filled with diet Pepsi, diet lemonade, and zero calorie flavored water.  Nothing with any decent amount of carbs in it! Okay no panic I had glucose somewhere. Eventually I found a bottle of liquid glucose.  I got my son up enough to drink and sat on the couch to wait.

I checked out the world of Twitter. I caught up on the latest happenings in the world of Facebook and read a few pages of my book.  Soon it was time to check him again.  Success…well sort of. He was now 4.6 (83).  It was still far from ideals but he was on his way up.  I scoured his room and found a bottle of glucose tablets. He would not be happy in the morning. He says that they leave a crappy taste in his mouth when he gets up but a glucose hangover it would be.  I fed him three tablets while he slept and returned to my own bed.

I wish I could say that I instantly fell asleep but I didn’t.  By 5:30 I was still staring at  the clock.  Thankfully its Saturday so I could sleep in a little bit but by 6 I checked one more time just to make sure all was still okay. He was a lovely 7(126) so I was happy to doze for a few more hours.

Diabetes may have kicked my sleep pattern to the curb for one night but we are ready to fight another day…and make a few changes to summer basal patterns!

fight the d monster