Luck of the Irish

I am not Irish.  I have never really thought much about St. Patrick’s Day.  As a grade school child, it was a day to make shamrocks and wear green to school.  Over the course of the years, it was just another day.  That was until the year 2000.

That was the year that we all spent wondering if the banks would shut down.  Would the Y2K issue crash everything that we had come to rely on? How would our lives change? Well, Y2K never really seemed to impact much but the year 2000 did forever change my life. It was the year that my two year old son was diagnosed with Type 1 diabetes and was given just 24 hours to live.

For 15 years, March 17 has been a day of sadness and celebration. I grieve for the life my son never got to have–a life without carb counting, injections or blood glucose tests.  Its been a day when I relive every minute of naivety, fear, panic, and gratitude.

Fifteen years later, I live in a city that celebrates St. Patrick’s day with a holiday.  I have had the opportunity to go to Ireland and fall in love with the country’s rich history.  I enjoy listening to many lively Irish tunes.  Its listening to those songs and thinking of this day that led my mind ot wonder if perhaps it was that Irish luck that protected us all of those years ago.

Perhaps it was the whisper of a leprechaun that put my son to the front of the cue in the doctor’s office on that St. Paddy’s day so many years ago.

The doctor who would go on to look after my son from ICU to an independent teen could have been an oversized leprechaun…with a different color beard of course.  He was definitely a stroke of luck.  He was one of the few doctors in that area who were forward thinking with their prescription of insulin regiments. He also believed in allowing us to learn and grow with my son’s diabetes care.

It was definitely the luck of the Irish that led me to make one of my first ever online searches for “parents of children with diabetes”.  It brought me to an online email support group that would become my lifeline.  With the stroke of a few keys, I “met” people from all over the world who would become my family.  I met people who knew exactly what I was dealing with and could help me to find my way.

I found mentors and friends who would be with me through the highs and the lows.  We would stay connected, meet on occasion and always been there for one another.

Through them, I would find the strength to go forward and help other people.  I would find a way to make a mark and hopefully improve the lives of other families living with diabetes.

March 17, 2000 changed our world.  It showed us the insidious nature of type 1 diabetes.  The luck of the Irish has been with us in  many ways however.  We have received  numerous gifts along this bumpy path.

Fifteen years later, my son is on the verge of graduating high school. Type 1 diabetes is just something that he has lived with for as long as he can remember. I would still give anything for him not to have to deal with this but its a part of him that he has come to accept.  March 17 is a day to celebrate the luck of the Irish, the blessing of those tricky little leprechauns, and the day that my son received his first injection of life saving insulin.

from blackberry (10)

 

 

Seeing Blue…still

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Once again the candles are lit.  A Canadian girl.  A 17 year old young lady who would soon graduate.  A child the same age as my son.  I don’t know the details. I don’t need to know. I can’t begin to imagine the family’s pain. I can’t even think about it. I would be swallowed up by the grief and the sadness. 

Blue Candles–they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

I don’t tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don’t light candles on my Facebook profile.  I don’t write about half of the stories that I hear.  I can’t. I read about these children–whether they are fourteen or forty, they are still someone’s children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can’t focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn’t. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

As parents of children with diabetes, we do all of that “normal” stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

Last night was my son’s first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son’s hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.

 

Taking a Low in Stride

DING!

I check my phone. Who is texting me at 6 in the morning? I really wanted to sleep in until at least 8 today.  It wasn’t my phone.  It must have been my iPad. Probably my oldest messaging me to tell me that he is up for work.  I had been teasing him about over sleeping.  I tried to go back to sleep.

“Your phone is ringing.  Answer your phone. Its your phone. Please answer it!”

Nothing good comes from a phone call at 6:30am.  I see my youngest’s phone number. I hear a deep voice.  He had  a site issue the day before. I am sure its my ex-husband calling to tell me that my son ended up in the hospital or they need help.  As my mind clears, and I hear “we need to make some changes. I was low at 6am.”  I realize that it is my son!

“What are you doing up this early?”

“Got to get my exercise! The early bird catches the worm! You can’t sleep your life away.”  says the child who can easily sleep until two in the afternoon!

Hold on! He said he was low. Now he is saying that he is taking a morning walk.  My brain is starting to clear and this does not sound like a good situation.  I ask him if he is still low. He says no but he is walking and taking breaks just in case.  He swears he is testing and he is okay…and then the connection is gone.  I call him back. It goes straight to voice mail. I call again. Same thing. I try to go back to sleep but my imagination fires up in high gear. What if he went low and fell in a ditch somewhere.  I text him to call me.  I try to go back to sleep. It’s not happening.  I call again.

Finally after about 10 minutes I get through. He had been camping with friends, got up this morning and was walking back to his father’s house. He was no longer low.  The low was earlier.  I asked if he had over bolused the correction from his site failure, been drinking, or made a bolus mistake in some food that he ate.  He said to no to all of the above.  I am not sure that he would have honestly answered question number two but I threw it in there amongst others so he could say yes, without saying a specific yes to the alcohol part. Either way, we decided to leave the low for another night because the corrections may have had an impact…amongst other things.

We chatted for a bit longer until he informed me that he was back at his dad’s and was hoping for a big cooked breakfast before his father headed off to work. We discussed bolusing strategies after his morning walk and then said good-bye.

I tried to go back to sleep but at that point I was sadly too awake to think about it. Instead and I lay there and realized that this was a foreshadow of times to come.  Times when he would be by himself and possibly calling to bounce a diabetes strategy off of me (or not).  Times when I would worry and wonder if he was safe after a low.  Did he fall and there is no one to help him? Those are things I will worry about but he also showed that he was okay.  He was taking it all in stride…literally. I will have to learn to do that too…one day…some time..later.morning-walk

 

D-Math Muddle

There should be a warning in life to prepare you, some sort of course you could take, or as my son would suggest–an app that would do all of your diabetes related math. I can handle adding up carbs in a meal. I can subtract fiber.  I can even follow the formula for an extended bolus.  I can establish the carb factor for many homemade meals.  Figuring out how much basal my son needs at certain times can however be a nightmare!

Last night he had the brilliant idea of taking off his pump before a workout.  He planned to use the “disconnect” feature which gives him part of his missing basal upfront and then the rest at a specific time so that there is no basal missed when the pump is off. Smart kid! The only problem was he was high before disconnecting.  Do we correct the high? Probably not because he is exercising.  He has a cold.  His body is fighting germs.  Exercise may not be enough to cut it.  The pump of course gave a suggestion for the correction but it hadn’t factored in those two key details.  Mom had no mathematical formula to do this with so my solution? Wing it! Take a smaller correction and hope for the best!

The next question came in the form of how much basal to you deliver before exercising? He figured he would be untether for about 45 minutes but the pump would only allow 50% of the basal rate.  Was he going to need all of his basal rate when he was going to be exercising anyway? Probably not. Where is that calculator that will tell me how much he will burn while exercising to the Body Beast as well as completing his own routine? Oh yeah, its more of the “Mom Guess” formula. Joy!

I assume my guesses did okay.  He was 7 (136) at 3am and woke up at 4(72).  My pancreatic skills sufficed for that round of exercise.  Let’s hope I am as brilliant for today’s battle. Math-problems-

Sleep Guilt

Do you ever feel guilty for sleeping? The other night, I was in bed and really wanted to roll over and go back to sleep. I am a night-time tester and have been since diagnosis. I know some people do not believe in a need to test at night and that is their choice.  For me, night testing is not a choice but a job that I must do to keep my son safe, healthy and alive each night.

I know how important this is to me.  I know that there are nights that I have woken up at unexplained times to find him low and dropping.  I know that I have checked at other times and found him high or with site problems that I was able to stop before they turned into ketone issues.

I am very conscious of how “lucky” I am to be able to test my son at night. I know that there are parents who have lost their children to diabetes that would gladly take my place for a few nights.

I should be used to interrupted sleep. I have not slept through the night since the before the birth of my first son.  He was a terrible sleeper who never slept through the night until he was six years old! Waking, walking, testing, and going back to sleep to do it all over again a few hours later should be habit and simple.

Despite all of that, I often feel guilty when I wake up and don’t want to get up.  When I have those moments of decision–when was the last time he was tested? What was his reading? What are the odds of there being a problem right now? Do I need to test yet, should I do more research and visit their website one more time or can I doze off for another hour?

Sometimes those questions simply make sense.  It may have been three hours since I went to bed but I know that my night owl teen has only been asleep for an hour and he normally does remember to test before he goes to bed.  He also knows to tell me if there is a problem before he goes to sleep. It may therefore be safe to sleep a little while longer. Sometimes, those questions are purely selfish. My bed is warm.  My body is in a pleasant state of relaxation and I really don’t want to disturb it. It’s at that point that I feel guilty.

Getting up is my job. It is not one that I would have chosen but its the role that I have been given and it is very important.  My son will sleep through almost anything except the worst of highs.  Some days I wish it was different but as I have said before, everyone has something to deal with.  This is our “something” and honestly, the alternative is not worth a thought. So I live with the guilt of sometimes not wanting to get up.  I push past it and do my job–the job of a parent of a children with diabetes.  fight the d monster

Blog Week LOVE!

Spread the Love – Sunday 5/19 Link List

Wow Day 7 of Diabetes Blog week already! I apologize for missing out on yesterday’s Art Day.  Its a long weekend here in Canada and honestly…I am enjoying a country weekend with limited internet access and creative supplies. I did not want to miss sharing some of my favorite new blog finds however.

I have always enjoyed the honestly and talents of Diabetes Blog Week founder and organizer Karen Graffeo.  After reading Scott Benner’s new book “Life is Short, Laundry is Eternal”, I have also taken the opportunity to look at his blog “Arden’s Day“.   

This week I made sure to check in on many of these and other great diabetes bloggers. I was touched by Scott of “Rolling in the D”s day 4 post on “coming out of hiding“.  I was so happy when reading about the favorite D-memory on Nacho Blog.  I hope my son will have such an amazing employer!

Finally, I got the chance to sit and read posts by Mike of “My Diabetic Heart”.  While I have followed his tweet for some time, I don’t often have a chance to click on his posts but after reading this wonderful post from Day 2, I definitely will make the effort to do so in the future!

Thank you everyone who shared this week and I am looking forward more amazing reads!

Better the Devil I know

 

Day 5 and today’s prompt..Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

This may seem weird, but I would not trade for any other chronic disease.  Each one has its challenges and struggles.  I think of people I know with asthma–they have to carry inhalers at all times and never know when an attack could strike.  They do not always occur during the day.  If an attack happened at night, would someone be there to help?

There is epilepsy.  My aunt and uncle both live with this disease.  My uncle has been seizure free for enough years now to be able to drive and live a “normal” life but the fear of never knowing when one could hit? The embarrassment they sometimes feel afterwards? No thank you.

There is celiac.  That would be easy right? Wrong.  I have considered trying a gluten free diet and then I looked at all of the “stuff” that you have to stay away from.  Its bad enough reading carb counts, watching fat and dealing with fiber and protein but looking for hidden ingredients in food? Add to that the high cost of those foods without gluten  No, I think diabetes will do. Granted with celiacs, you don’t have to carry around “stuff” but you have to be on your toes with every ingredient in every piece of food you think about eating.

Diabetes sucks. I hate dealing with it. I would love a cure but as they say “better the devil you know”! Has this devil given me a new respect for other chronic diseases? Absolutely! Before life with diabetes, I know I took things for granted.  Now when I sit down to a meal with someone and we don’t have to count the carbs or deal with bg levels, I almost feel like something is wrong! Its not normal to do that–not to test or calculate!

I better understand parents who struggle for school supports for their children.  I “get” adults who need time off work for health related issues. I hurt for those who have to struggle to get medications and medical devices paid for by insurance or public health care systems. I value my health in a new light. I appreciate each day in a way that I did not before diabetes.  We are all (usually) happy to be alive but knowing how fickle diabetes can be, brings that happiness and gratitude to a new level.

Do I attribute this empathy with the DOC? Honestly, probably not.  It comes from life experience–watching my son nearly die.  The diabetes online community has brought people into my life who have situations that have made me work harder as an advocate.  It has brought stories that keep me aware of how deadly this disease is.  Most importantly, it has brought me friends and people who also have learned greater empathy and strength because of this beast. Florida Vacation July 2007 110

Life is Short Laundry is Eternal: Book Review

laundry book

Note all of my bookmarks…a sign of a good read!

This book is NOTHING like what I expected. What did I expect? I don’t know but I should have been warned of a few things before starting.

First I should have been warned NOT to read this book in public.  There are too many times that Scott’s writing evokes either tears or laughter or both.  This can be embarrassing and hard to explain when reading in public places. Second, I should have been warned that this dichotomy of emotions would start within the first 20 pages and continue for the entire book!

Because this book came in a package with a diabetes how-to book, I very much expected a book about diabetes.  I was wrong.  Diabetes is huge because his daughter has diabetes but diabetes is secondary to the book’s wisdom and insight.  I quickly went from…what sort of diabetes peeps should read this? To…my cousin and her husband should read this because they live this same life and I bet they can relate! To…my sons should read this. To…everyone should read this.

No this isn’t a life altering book with new and shocking revelations. Its a simple book about love presented in an honest and touching way.  Scott writes about his mother’s support, his love for his siblings, the relationship with his wife, and of course the developing relationship with his children from a unique perspective–that of a stay at home dad. In this day and age, stay at home moms can be the brunt of ridicule   What do they really do anyway besides watch afternoon television?  The stereotype for a stay at home dad is a thousand times worse. Scott breaks through all of those barriers and shows how important the roles of parents are–whether they are the ones working in the home or the ones considered the wage earners.  He shows the incredible value of both partners and how vital it is that they work to compliment each other.

As I have written before, I can judge how good a book is by how many pieces of paper are torn and left as bookmarks to refer back to or how many pages are now marked with highlighter.  This book sees a lot of both.

Scott’s reaction to an examination of his wife during their first prenatal visit upon finding out they were expecting their first child is both honest and hilarious…”I remember looking at Kelly and thinking, Fuck, getting her pregnant is ruining all of the fun that boobs bring to my life!” and he manages to keep this tone up for the entire book. We empathize when he drops his son or loses him in a store. We take to heart the amazing advice he provides on page 81 to “keep moving forward, ask for help when you need it, never give up, and scream at the top of your lungs once in a while, things should turn out fine almost every time. Maybe not as you pictured…but pretty damn good.”

My biggest mistake when reading this book was when I took it to my doctor’s office to read before my appointment. I was at the point when Scott and Kelly’s daughter Arden was diagnosed with diabetes. I always have a hard time with diagnosis stories.  The fact that this little girl was diagnosed at 2 years old, the same age as my own son was, should have told me to keep the book in my purse and NOT read it in public but I didn’t heed the warning signs. Instead, I fought back the tears and pretended that I was there because of a cold.  So much of what he wrote could have been written by me.

“She was only two. Do little kids get sick like this when they’re two?” was so similar to the feelings that I had when my son was diagnosed. It couldn’t be that serious–could it? He was so small. Scott talks about feelings of “dread, anger, shame, and more pressure to be perfect than I had ever experienced” and I knew exactly where he was coming from.

Reading, “I wish that I could tell you that it only took a few days, weeks, or months to shake the feeling that type 1 diabetes brought to me, but in all honesty, it was much longer.  I didn’t begin to feel normal again for two years, and the interim was overflowing with new, frightening and potentially defeating daily situations.” Fit perfectly with the advice I had recently given people at a webinar.

Is this the book to read if you want to learn how to cope with life with diabetes? Perhaps it isn’t.  Diabetes is not the focus of this book, living life is! Scott’s open and frank discussion about life, love and making the most of every memory is advice of value to all of us.  This book should be read by everyone who loves to laugh and values their family. His unique perspective and wonderful humor made this book a pure pleasure to read and a book that must be shared with everyone in your life–young or older.

Baby steps forward perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. scale

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??