Monday, March 31, 2014

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

Tuesday, March 25, 2014

The Blame Game

When a person is diagnosed with lung cancer do we blame them? Do we question their lifestyle and then make them feel ashamed? Do we minimize what has happened to them because they possibly brought in on themselves by not listening to the anti-smoking ads?
If a person is young and suffering from dementia do you blame them for drinking too much? Do we shun them because they should have dealt with their alcohol problem before it brought on a much larger issue?
We may shake our heads…and they might also.  We may wish that they had chosen a different lifestyle but we often also look at others who lived that exact same lifestyle and are fine.  We wonder why them?  We feel sad, but we do not blame the victim.
Why then does society feel that it is okay to blame people living with diabetes for their disease? As a parent of a child with diabetes, we are asked if we fed our children a lot of sugar.  It is suggested as mothers that we did not breastfeed our children long enough to ensure that they developed the proper antibodies to protect themselves from developing diabetes.  The list of non-sense reasons go on to the point that parents become frustrated and angry.  They try to distance themselves from people living with Type 2 diabetes which lives with its own stereotypes in hopes of making the blame go away.
People with Type 2 diabetes obviously caused their disease and are therefore to blame for everything. We know that it is a lifestyle disease that strikes people who are overweight, eat only fast food, and are terribly lazy.  It is all their own fault.  Because of their bad behaviors they are the causing  increased hospital costs, increased taxes to pay for those costs, and probably the reason that gas prices are so high!
Can you see the logic? You are right, there is none.  Diabetes seems to have a genetic component of some sort that is triggered by something. If we could figure out the hows and the whys, then we would have a cure and everyone would be quite happy.  Sadly, there is no cure. There is no definitive why.
As a parent of a child with diabetes, I know that I did not force feed my children large amounts of sugar.  My children were not given sweets when they were younger. They did not have a large amount of processed foods. They were breastfed for differing amounts of times and were both vaccinated on schedule.  Did I do something to cause my youngest son’s diabetes? I pray not but I have enough to deal with without delving into a myriad of “what ifs” on the subject.
My son lives with diabetes. He has for the past 14+ years. We have worked and continue to work to keep him as healthy as possible That takes a lot of time, effort and money to purchase the supplies and devices that are best for his care.  The financial cost of keeping him well is nothing compared to the return that the government will get by having a healthy, productive member of society contributing to their tax coffers for many years to come.
As person with Type 2 diabetes also faces many stereotypes.  They are overweight and therefore caused their disease.  They are out of shape and live off of fast food. Really? I know many overweight people who do not have diabetes. I have met athletes in great shape who have Type 2 diabetes.  Does body shape make either one of them any less important? Does their age mean that its their fault?
Do we blame a child for developing Type 1? No, they are innocent but we can blame their parents. They should have done more! Do we blame adults who find out that they are insulin dependent as well but it doesn’t happen until they are in their 20s?30s? or later? I mean they obviously screwed up somewhere as well right?
Are you starting to see the insanity? Why do we waste energy on blame? We do not blame the person with liver failure or dementia for their past lifestyle.  We do not suggest that the parents of a child with leukemia should have breastfed their little one for longer. Why then do we feel the need to blame people living with diabetes?
The answer is not changing a name. As Shakespeare says…”What is in a name? A rose by any other name smells just as sweet.”  Well diabetes–type 1 or type 2, is just as rotten a disease no matter what you call it. No matter what the name of the disease involving the improper use of production of insulin is, it is still a disease that happened TO someone. It is not a reason to shun or demean someone.
I can think of no other disease that is so misunderstood to the point of creating real danger. A lack of understanding about the serious nature of this disease can result in people with diabetes not having access to the best medications or devices. It can mean that when diagnosed, people with diabetes do not always understand the serious nature of the disease.  It can result in frustration and anger in people living with diabetes when they try to educate the general public, educators and even medical staff about the realities of the disease–its costs and the toll it takes on everyone involved.
It is time to end the blame game.  Diabetes sucks.  That is a fact that we must focus on. It is a very serious disease that does not care what color you are, how old you are or how big your wallet or insurance coverage is.  It will enter your life and change it completely.  It will threaten to end your life. It will always hover on the sidelines waiting to wreak havoc on your day. It must be stopped but sadly we must first end the blame and so that we can all focus on the cure.

Wednesday, March 19, 2014

5 Things that I have learned about me over the past 14 years...

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.
In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…
1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.
Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.
Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.
2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.
After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.
Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.
I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.
3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.
I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.
4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.
Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.
And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.

Monday, March 17, 2014

Fourteen Years Since My World Exploded

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. 
14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come. 
14 years later, my son is a young man making his own decisions and stretching his wings...who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next. 
14 years have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care. 
14 years ago, diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. Its just his "thing" to live with.
We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times--failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little. 
Diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them. 
14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never son has but I haven't. Instead, on days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology! 
Diabetes sucks but life after diabetes...well its still life and that is pretty amazing!

Wednesday, March 12, 2014

Looks Can Be Deceiving

For the past few weeks, I have been going through old photos for a variety of reasons. I came across this picture.  My young son looks so sweet and innocent.
You would think such a picture would evoke the “ahhhs” of a mother right? Wrong! I know the stories behind this precious image. I remember the many faces of this child during those long car rides that were less than sweet. 
liam asleep july 2003
It was the summer of 2003 and my mother, my sons, and I were driving across Canada to see friends and spend time with family. It truly was an amazing trip but we also had diabetes along for the ride and so the challenges were a little more. 
While driving for 8+ hours, I would read Harry Potter to my oldest son when my mom was behind the wheel. It killed time and seemed like a great idea. A four-year old who was high did not share those feelings.  At one point, that sweet little boy you see in the back seat, took a Harry Potter book and flung it across the car leaving a mark on my window.  We were done reading with him in a car for a bit.
Why was this child high? Well, it could have been the insulin that got cooked in the cooler in the trunk of the car.  It may have been the insulin pen that quit working but Mom did not realize it right away. It could have been the long hours in a car and not getting quite the right mix of long acting insulin to balance the drive. The reasons were plenty but the results were flying books and a need to pee at the most inopportune times.
He demanded that we pull over while speeding along in rush-hour traffic on a Vancouver freeway.  This resulted in the creative use of spare coffee cups and extreme gratitude that he was a boy.
Being high when traveling also meant that he demanded that we not proceed flowing  the pilot car despite being stuck in sweltering heat on an Ontario highway for hours.  We had been held up in the same spot for literally over an hour and he had not needed to use the washroom during that time but the second the truck came and allowed us to proceed, my sweet little angel began “the pee dance” and was adamant that we had to pull back over NOW!
When asked if I would do that trip again, my answer was always the same…in a heart beat. I didn’t mind having a 4 and 8-year old in the car with me for hours…most of the time.  We stopped and enjoyed parks to break up the days.  We met wonderful people and got a chance to see the Canadian landscape up close.  And we have memories….some very interesting memories!

Friday, March 7, 2014

Balancing Diabetes...A book review

A number of months ago, I was honored when the folks at Spry Publishing contacted me and asked if I would be interested in reviewing an advanced copy of Kerri Sparling’s new book, Balancing Diabetes. I have enjoyed Kerri’s blog but I honestly wondered about a book that suggested that you could find some balance in a life with diabetes.  What pat formula would she suggest?

Any fears or concerns that I had were quickly pushed aside as I began to devour this book. As with any book that I read and am going to review, I bookmark passages and pages with little notes of why this sentence or paragraph moved me.  In looking back at Kerri’s book, I literally have over 50 different sections marked off for mention! This has to be a great book…and it is.

As  a mother of a child with diabetes, I was also worried that I would be reading this book from the outside. Kerri is a person with diabetes and this book would be all about her right? Wrong. By page 9 Kerri’s mother shares her feelings and I could hear myself in her words “…I didn’t know what we were getting into. I just thought, Okay let’s go deal with this, whatever this is.”  Kerri’s mom goes on to say that she handled what she was given but did not want any more.  She would learn in stages because the get everything at once would be overwhelming. I felt the same way when my son was diagnosed.  I was on overload and autopilot for months. Slowly I would add knowledge and information when I could handle it…this was how we, as parents, found balance with diabetes.

This book brought out many emotions.  Reading about the burden of being shown and repeatedly told about your own mortality at such a young age made me wonder how my son feels? Is he still an immortal teen or does he have Kerri’s “heightened awareness of how vulnerable” her health was? Either way, does he also know, that I share Kerri’s mother’s feelings when Kerri told her that she didn’t care if she was high and her mother responded “For now, I’ll care enough for both of us.”  Yes, I cried reading this.

But like the title, this book has balance.  While there are many very serious conversations, humor creates a fabulous balance and brings a different kind of tears…the ones you get from laughing! Kerri’s wonderful sense of humor shines through in this book.  The topic of sex is never an easy one but Kerri takes you past the embarrassment and makes you laugh with her candor.  She shares the story of her first serious low  with her husband. It took place after they had made love and her husband lays claim  to responsibility for it happening!

Besides the amazing humor and the walk through Kerri’s life, she brings in the experiences of many other people who live with diabetes to provide some fabulous tips for living a full life with diabetes.  They  takes us through diagnosis, the trials of teens, life as a young adult, dating, marriage and even pregnancy.  Kerri talks about the sense of helplessness that diabetes can create at times–for the person with diabetes, their partner, and even for the parents.  Sean Oser provides insight on dealing with blood sugar readings, “There are no good or bad blood sugars; every result is just a number, and it tells us what to do next.” This is a motto that I have tried to instill in my own son for years.

Balancing Diabetes looks at pump starts, travel and advocacy.  Each topic is looked at both from Kerri’s perspective as well as that of  many other people in the diabetes community.
The most poignant section in the book for me, was when I saw a person state that they do NOT believe that you can find a balance when living with diabetes.  What? But the title of the book says that you will.  How could this happen? How could someone state that balance cannot be achieved? Well, that is the beauty of this book! It does not show one size fits all, pat answers. This book shows you real life. It shows real pain and real accomplishments. It emphasizes that diabetes really is a “your diabetes may vary” kind of disease.  How wonderful!

This book is a fabulous balance of perspectives and stories.  It does not tell you one way to “do it right and achieve balance”, it shows you a variety of approaches to a variety of topics and what works for different people.  The best thing is that it also tells you that you never fail. If you have been really bad about taking responsibility for your diabetes care, cut yourself some slack and make a change now.  It’s not too late. If you have been diagnosed with diabetes related complications, don’t beat yourself up. It’s not your fault.  Brush yourself off and move forward. You have got this handled. You are amazing!

Balancing Diabetes is a wonderfully written book filled with a balance of real life events that show that we are not alone–whether we live with diabetes, are parents of a child with diabetes, or just love a person with diabetes. Now hurry up and order your copy because I noticed that Amazon Canada was almost out already!

Tuesday, March 4, 2014

What if Diabetes Hadn't Come Knocking?

What if diabetes hadn’t entered our lives 14 years ago? What if my son never had to lance his finger or inject himself? What if we had never heard of insulin pumps or continuous glucose monitors? What if I was able to sleep through the night once he turned two and never looked back? What would our world be like?
I have no idea and after letting these questions sit in my mind for all of a minute, I decided that it really wasn’t worth my time to even ponder. Chances are that my world, and his, would be vastly different but nothing will allow us to go back.  Nothing will change what is
Perhaps I would have returned to the workforce once he entered grade one as I had originally planned. Perhaps I would have found a job related to my degree…or not. Perhaps I would have still been involved in school politics…or not. Perhaps I would have still stood up to injustices that I saw locally, provincially, or nationally…or not. It doesn’t matter what I might have done. It only matters what I have done. 
My son was diagnosed with Type 1 diabetes when he was 2 years old. He knows no life before injections, carb counting and the lancing of fingers.  His life is filled with diabetes supplies and nutritional information packages.  He has to learn to adapt to peer pressures, girlfriends, career goals, and diabetes care not necessarily in that order.
After diabetes moved in I made a decision not to return to the workforce. I stayed home with my children to be readily available to my son at school and throughout the nights. I was lucky to have been able to make that choice.
I created a website, rambled in a blog, and turned to social media to seek support and later hopefully provide some.  I stepped up when I saw something that I didn’t like, and as always had been my way, I worked to change it.  The difference was that diabetes made these issues that I stood for more meaningful, more personal, and impacted more people.
I don’t spend a lot of time looking back and saying what if… I spend some time wondering if I could have done some things better but I try not to live there. I rarely, if ever think about what life would have been like without diabetes. It is a part of our lives. It is my son’s disease but it has impacted our entire family.  It has brought us blessings and has lived in our nightmares.  It creates struggles and issues that would not otherwise exist but it is part of our life.  It requires constant vigilance but so does life.  It shows us our strengths and reminds us of the importance of family and friendships. It shows us a new definition of family.
I don’t spend time wondering “what if diabetes missed our family?”  I don’t spend time thinking about a cure. I pray for a time when my son can access new technologies like the bionic pancreas that will make his life easier.  I quietly hope that he will live to see a cure but it is a hope that sits at the far edge of my mind.  More importantly, I pray that my children are happy. I hope that they both have long lives. I want them to maintain their health and hope that  they always know how much they are loved, valued and cared about.

Saturday, March 1, 2014

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 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