Being “Normal”

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What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

An Unexpected Anniversary

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An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.

Trick or Treat

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Trick or Treat

October 31st is a significant day for me. I have 3 major memories that I associate with this day.

1. Going out for Hallowe’en as a child living with Type 1 diabetes.

2. October 31, 2000 is the day I dipped my 7 year old son Kurtis’ urine to discover he had 4+ sugar and thankfully no ketones but knew he had developed Type 1 diabetes. I dipped his urine as he refused to let me test his sugar with a glucose meter. I had poked his fingers 2 years earlier and knew this day would come.

3. I became a parent of a child with Type 1 diabetes trying to figure out how to let him enjoy going out for Hallowe’en without allowing his blood sugars to go askew.

This Blog is 1 of 3 parts sharing my experiences with October 31st.

Part 1:

When I was a child there were no pumps, rapid acting insulin or carb counting. My Mom did not have the technology at her finger tips to count carbs, push a button &/or inject & eat the treats. For the first few years, my Mom & Dad would take me out for Hallowe’en. They would use the bag of treats for when I had low blood sugars. I don’t recall having them as a random treat.

I don’t recall how old I was but I was under 10 when there came a time my parents figured I would be old enough to keep the bag of Hallowe’en candy in my closet. They told me I could keep it in the closet in my bedroom on condition that I tell them when I felt “funny” so I could dip my urine…yes…dip my urine!! to test to see if I was negative (a possible low). Then I could ‘treat’ with my treats.

I recall trying to have self control but what child under 10 can keep a bag of candy in their closet & not eat it at will? I understand why my parents did what they did, they wanted to try and incorporate some normalcy for me. They felt by doing this it would help me feel included in choice.

What happened? Each day when everyone was busy I would sneak candy. How did I get caught? My Dad was an avid runner. He always chewed gum when he ran. One day he went to go out for a run and realized he was out of gum. He came to me and asked to take some gum from my Hallowe’en bag. I still remember the panic. I felt horrified. The bag was full of wrappers but nothing else.

Little did I know that my Mom had been perplexed for weeks wondering why my urine was dipping positive for high sugar. After trying to avoid my Dad from going into my closet to get my bag of stash that no longer existed I knew the jinx was up.

I stood there with a full body panic as Dad looked into my bag. Dad was pretty cool. I do believe in that moment in time he knew that him & Mom shouldn’t have allowed this to happen. It was explained to me the implications of what happened to my sugars as a result of my choices. Mom was relieved because now she knew why!! Two very important lessons I learned and interestingly will never forget.

What happened with subsequent Hallowe’ens? It was actually pretty cool! Mom, Dad & I with my little sister & brother would go through our stash as most do. When we did, Mom, Dad & I would negotiate the price of my stash. It was a game. With that money I was allowed to go shopping for my own treats. Off to the local convenience store I would with my $1-$2 and go buy whatever sugar free treats that were offered.

I don’t feel like I missed out. Not once.

Stay tuned for Part 2.