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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.

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