Obvious

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Obvious

The tabby cat in the picture is Oscar. Yes, he is wearing a cast. He broke his leg in our basement shortly after we moved in to our new home last June. How? We have no clue. Young Oscar just wanted to be cuddled & cared for by our 12 year old Midge. How did Midge sense that Oscar needed some down time & snuggling to heal? Who knows. BUT…it is obvious to anyone looking at the picture that there is a cat with a cast. Something is wrong with him. Shortly after this photo op the cast fell off. For the cost of re-casting & the misery we caused him by doing so we decided to let him heal without it. He limped & hobbled around for several weeks, obvious he still had something painfully wrong with his leg. It was difficult to watch. Today you can not tell he broke his leg just a year ago. Does it hurt him still? Does it ache? Maybe. But as cats do, unless it is serious they can’t, won’t or don’t have the ability to communicate that. They act like all is normal. They keep to themselves & prove they can rebound from the impossible.

I hear time & time again the frustrations of people living with diabetes. Where is the cast, the seizure, the wheelchair, the appearance that tells those around them they have a chronic condition that somedays can make them feel like they’ve been hit by a bus? Aside from having a hypoglycemic seizure what are the obvious signs that one living with diabetes has had a series of highs or lows that have left them feeling like they want to be cuddled & cared for until they feel better? Words can only express the experiences one has. How can bystanders relate?

The frustration for many is to call into work or not go to school because they had 2 low BG’s in the night, woke up really high in the morning & just want to nap a few more hours to get the sugar back on track & clear the cobwebs out of their head. This is near impossible if one wants to continue to be a productive member of society….which is the expectation…because diabetes is not obvious. To the contrary, many living with diabetes attempt to hide it from others, compounding the exhaustion of managing it & recovering from the times of variability that come with it.

There are pros & cons living with a ‘not so obvious’ disease.

We hear about the cons all too much. Let’s focus on the good. Consider anyone living with diabetes that are in the spotlight & those that achieve many feats but have not gained the recognition. Examples which I encourage you to Google & research…Team Novo Nordisk (a team of cyclists competing in various events), Chris Jarvis (Olympic Rower & founder of iChallenge), Sebastien Sasseville (1st Canadian with T1 diabetes to summit Mount Everest, completed the Ultra Marathon Sahara race & 5 IronMan races to date), Chloe Steep (Founder of Connected In Motion), Steve Richert (Founder of Living Vertical), Kerri Morone Sparling (Six Until Me), Shawn Shepheard (Sugar Free Shawn), George Canyon (Country Music Artist), pilots, doctors, nurses, pro sport & not so pro athletes, trades, heavy equipment operators…these are just a few. There are so many it would seem like you are reading the Census in the book of Numbers in the Bible….but far more exciting!!

By living with a ‘not so obvious’ disease, people with diabetes accept that because we appear as ‘normal’ we want to supersede normal, we want to communicate that despite living with a not so obvious chronic condition we can & will accomplish whatever is put before us. We want to prove we are different in a good yet obvious way. Sometimes to the point of achieving near superhuman achievements.

Is that a good thing? I have heard time and time again from many..”I am thankful for my diabetes because I am healthier living with diabetes then if I didn’t.”

Many living with diabetes see themselves as healthier as those who don’t because they become more aware & pro-active in their health. Initially one with diabetes becomes healthier & begin to set goals beyond what they knew existed by no choice of their own but ultimately by the drive, strength & tenacity that become product as a result of the benefits they experience by living that way.

There is an obvious that surfaces by living with diabetes. That is the incredible accomplishments & outcomes that result in living with the not so obvious.

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Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.

How to Prove You’re Cool with Diabetes

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How to Prove You're Cool with Diabetes

“Did you make any friends?”

After the first day of Kindergarten or starting a new school there are many questions to ask. The answers are usually pretty straight forward. Kids usually come home from school telling of events that occurred with their friends. Some days it is the story of “So and so is not my friend anymore, they did this to me…” or “Look at the picture so and so made for me.” or “So and so gave me their cookies and I traded them my chocolate milk.”

Children are compassionate and caring. They are resilient. Children are honest but also cruel.

As a Mom, I was witness to a mob mentality with a group of Grade 4 boys.

As I mentioned in my blog yesterday, after speaking with the children in Kurtis’ class, it seemed some of the kids would play with him. He now had a small group of friends. Once they knew they couldn’t get diabetes by touching him, they were okay with playing with him.

In October of his Grade 4 year I started Kurtis on an insulin pump. Thankfully his teacher was incredible. She was a classmate of mine from primary and high school. She was very proactive in Kurtis’ care and the learning curve associated with learning how to pump. At that time I worked part-time in the hospital as a nurse in the Intensive Care Unit. The teacher knew she could call me at work or home for questions or concerns. The calls initially were frequent.

Upon starting Kurtis on his pump, I opted to start him on an angled teflon infusion set. I tried a straight-in set but they kept bending causing sudden, extreme highs. I felt the angled set would give us more consistent results. The introducer needle was large enough, depending on where it was inserted, it could be quite uncomfortable. I put EMLA cream on his site one hour before inserting so he wasn’t feeling the discomfort. It worked beautifully.

One afternoon I received a call from his teacher. She sounded excited. She wanted to tell me that Kurtis’ infusion set had ripped out during recess. She was so proud of him. There was no EMLA cream in his kit. Kurtis decided he would insert the Silhouette without it. Mrs. Sperry was awesome. Instead of sending him down to the office or nursing station to change it, she would over see the change. The class was curious to watch.

At this point, the ‘cool’ boys were not as interested in playing with him. This bothered Kurtis. He wanted to play the sport games they played at recess. He didn’t want to just walk around the yard, he wanted to be active. I told him although I understood his need. I also encouraged him to start his own games in the yard, but he wanted to play with the athletic, cool boys.

During the phone call I was told that the kids were so impressed with what Kurtis had done. They talked about it all afternoon. Kurtis had put a really big needle in his stomach. He was SO brave.

Not one Certificate of Achievement could ever make Kurtis feel as proud and accomplished as that day. Days and weeks later, the Grade 4 ‘cool’ boys began to invite him to play at recess. The icing on the cake for Kurtis.

As a parent I had mixed feelings. To me it was a form of intimidation. A child having to go through a form of initiation to be friends with children so he could gain the acceptance and confidence he needed to feel good at school. I understand this happens with all children to some degree, with or without diabetes. I have seen it in a milder form with my daughter.

I had to accept that this was part of learning and life with diabetes. Since those days of Grade 3 and 4, I have hoped and prayed that Kurtis would learn that he should never have to prove himself to anyone because he lives with diabetes. It’s hard to convey that to a child, especially when they feel isolated from their peers because of it. As with many things our children experience, we can teach and guide them, but sometimes they just have to touch the stove to understand it’s hot.

Tomorrow my blog will be on the situations and concerns about Kurtis’ safety with his diabetes at school.

You Can Get Diabetes By Touching Someone

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DBB FB Blog Catch Diabetes Touching

Our family moved in 2001. As a result of the move the kids transferred to a new school. Kurtis was living with diabetes for just under one year. In his previous school the acceptance & understanding of staff & children with his diabetes was great.

Within weeks of his new adventures of being a 3rd Grader in his new school, Kurtis informs me he can’t make friends. “Why?”, I ask. “They point at me and laugh. The kids are telling other kids if they touch me they will get diabetes.”

Within days I receive a phone call from his teacher. She asks if I will come in & speak with the class. She tells me the same story Kurtis has just days before. She wants the class to learn about diabetes.  She is concerned that the misinformation being discussed among his peers will lead to long-term issues.  She is concerned for Kurtis’ well being.   Ms. Maker explains she feels I will make an impact because I live with diabetes as well. They will see me as a Mom who is a nurse, I have friends & I have a daughter that doesn’t have diabetes. I agree & start planning how I will speak to the children about this.

The main myth to displace was reassuring them that Kurtis didn’t get his diabetes from touching me.   My plan was to think like a 7 & 8-year-old.

Word for word I can’t tell you what I said or how I said it.  It was a little less than 12 years ago.  I do remember sitting in a chair with the kids sitting on the floor around me.  They had a lot of questions.  I kept it simple.  Kurtis was pleased & so proud his Mom went in to talk with the kids about his diabetes.  It helped with them being more social with him.  He was not gawked at as much.  But making friends continued to be an issue until Grade 5.

Look for my Blog tomorrow on what happened that caused the children to respect Kurtis and his diabetes.

 

 

Never Prepared

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Never Prepared

In all the years the kids were in primary and yes, even high school, I only missed one year of their first day of school. In my mind it was a given I would be there. I had to be there so I could take, what would become, the “First Day of School Picture”. It was very important to me and I felt for them, to be there to tell them to ‘have a good day, be safe, I love you’, giving them hugs and kisses before they got on the bus. The picture I took each year measured many things. Growth, happiness, anticipation, excitement, love, memories, health. I wanted to make sure the kids knew that school was a big deal. It was a positive place to be. Learning at school was as important as at home. This is a pic of Cayla, 9, and Kurtis, 7, in September 2000. Today I showed Kurtis the pic. He tells me he doesn’t like the picture, he thinks he looks like a geek. :p

In this photo, Kurtis is less than 2 months away from the day he was diagnosed with Type 1 diabetes.

Not knowing the ‘stats’, from the time my kids were born, I kept an eye on how much they drank, peed and gained weight. It didn’t occur to me to look up the ‘stats’ on being a Type 1 parent and the chances of ‘passing’ it on to my children until after Kurtis’ diagnosis. According to the American Diabetes Association, the stats read like this:

Both parents (neither have Type 1) have inherent risk factors that contribute to a child developing Type 1.

A child with a Dad living with Type 1 has 1 in 17 odds of developing Type 1.

A child with a Mom that had him/her before the age of 25 has a 1 in 25 chance of developing Type 1.

If Mom has her kids after the age of 25, the odds go up to 1 in 100.

A parent diagnosed with Type 1 before the age of 11 provides a risk of double that their child will develop it.

Regardless of the stats, in my gut I knew. I spoke with other parents who live with Type 1 diabetes that have the same worries as me. But is the effect of the diagnosis the same as a parent that has no idea until diagnosis that their child may develop it?

I try to put myself in my parents shoes as neither one of them have Type 1. Now mind you it was 1975, but hear me out. I am imagining myself as a parent living without Type 1 who has a child that is diagnosed with Type 1. The ‘radar’ saying “I will keep an eye out, just in case.” doesn’t exist. When that day comes. When my very sick child is before me and the Doctor tells me that he/she has Type 1, finally, because heaven knows in this modern-day of technology and knowledge it seems the awareness of signs and symptoms among many health care professionals still does not exist. I am told he/she will take injections of insulin to sustain them for the rest of their life. My mind would spin. I envision myself being whisked off to the hospital or clinic with my very sick child where I would be expected to take a crash course on how to keep my child from having lows so severe they could die and highs so high they become very sick with ketones with the risk of developing long-term complications, possibly dying from these complications. I would be expected to learn how to titrate a medication that is life saving but can cause death if not treated with respect. I have to learn how to poke my precious child with a sharp needle not once a day but several times. What are kids most fearful of? Pain. What do glucose tests and needles cause? Pain. What does a parent try to protect their child from at all costs? Pain.

I can’t tell you it was easier for me. If it was, it would be difficult to relate to the feelings of a parent not living with Type 1 prior to their child being diagnosed. I was ‘blessed’ to have more experience and knowledge. That’s all. At the end of the day, I am a parent first.

Kurtis’ ‘road’ to his diagnosis began 2 years earlier. He was 5, the same age when I was diagnosed. On one particular day he seemed to be drinking and peeing more than usual. I don’t know how, as he was my strong willed child, but I convinced him to poke his finger without much fuss. His blood sugar 2 hours after he ate his meal was 8.2 mmol/L (148 mg/dL). My jaw dropped. My stomach flipped. I called the Family Physicians office immediately. The receptionist told me to check his sugar after having him fast 12 hours. Now, I do have to say, this was not funny at the time but as a parent and now that I speak of it, it is. 16 hours later, I finally promised Kurtis I would take him to McDonald’s. I never took my kids to McDonald’s!! I was SO desperate & scared, I promised if he let me poke his finger I would buy him a McHappy Meal. He agreed. It is now 10am!! He must’ve been starving! Kurtis’ sugar was 4.8 mmol/L (86 mg/dl). I called the Physician’s office to report back. I wasn’t convinced that this made it all right. I had that gut feeling a parent gets when they “know” something isn’t right.

Fast forward to September and October 2000. From the time Kurtis was a baby he had a history of ear and sinus infections. He lived with one ear infection after another. From one sinus infection to another. He would finish one round of antibiotics and would be onto the next.

As usual, Kurtis had a healthy summer. On the first day of school, as pictured, he seemed great, looked healthy. Once exposed to the school environment of germs, sneezes and coughs, his health slowly declined to a point I knew he was going to be sick. Dark shadows under the eyes and very pale. I would keep him on a tight schedule of bedtime and keep him fed well with healthy, home cooked meals. It didn’t seem to matter.

But, this time was different. Kurtis had that ‘look’ I was familiar with. I was perplexed, he wasn’t getting sick. At that time, for his age group, track pants were the fad. He was always a big boy. Always in or over the 90th percentile in height and weight for his age. When he had a growth spurt he would get chunky and stretch up. Being 7 years of age, I didn’t weigh him often or become concerned if he thinned out a bit.

October 31, 2000. I had sent Kurtis to school with a plate full of treats for his classes Hallowe’en party. As well as making a point of being there in the morning to put them on the bus, I tried my best to be there to see them come home from school as well. As Cayla and Kurtis walked in the front door, I was excited for them. I looked forward to carving their pumpkins and get dressed up for our night out Trick or Treating. As I prepared and fed the kids their after school snack, in the conversation of asking how their day was, Kurtis’ informs me that he didn’t eat much at his Hallowe’en party because he felt sick to his tummy and peed and drank at the water fountain all day. I wanted to throw up. I knew. I didn’t even have to check him to know. But of course, I did.

After explaining to him my suspicions and what I needed to do to confirm, come hell or high water, Kurtis was not going let me check by finger poke. I did a dipstick of his urine. I wanted to cry. The test strip showed 4+ sugar. It was 4:30pm. I called the Family Physicians office again. In the background I could hear Kurtis crying “I hate diabetes” “I don’t want diabetes”. This time I knew it wasn’t going to be instructions to check his fasting. In my mind at that time, all I could think was, I GAVE my baby diabetes.

I believe my emotions with Kurtis’ diagnosis may be a bit different, but not much then parents who don’t have diabetes. In the end, I have come to terms with the fact, it doesn’t matter. It is what it is. BUT, with that being said, and why I write this post is that there are two things I learned that I want to pass onto you. Whether you are a parent that has ‘passed’ on Type 1 to your child or parents that carry those dreaded inherent genes that we know little about ….

1. I cried to my Mom many times about the fact I ‘gave’ Kurtis diabetes. I felt SO guilty!! Being the amazing Mom she is, do you know what she asked me? “So, if you were to chose whether you had Kurtis or he had diabetes, which would it be?” OH MY!! There is no choice! I would have him a thousand times over!!

2. A year later of Kurtis & I grieving (separately mind you, he never saw me grieve) he would sit on the couch trying to inject himself (he insisted) for a minimum of an hour morning and night. I would listen to him cry and wail about how much it hurt and he can’t do it and he hates diabetes …so painful to watch. I finally realized I was enabling him to be pitied for something he had no control over. I don’t believe in enabling people to be pitied. I then realized I needed to empower him. I told him he had no choice. I told him it sucked living with diabetes BUT he could do whatever he wanted to do! I asked him if he saw me wailing and crying over taking my needles? Did he see me feeling sorry for myself? I told him I would no longer tolerate pity. He could share his feelings but could not use his diabetes for pity.

Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future. Nelson Mandela