Normies

Who is a ‘normie’?

Basic answer – a person whose pancreas produces insulin AND their body knows how to use it.

Based on this basic answer anyone who has Type 1 diabetes, Type 2 Diabetes or LADA is not a normie.

I’m a normie. I wish I wasn’t but only because I’d like to take what makes my kids non-normies from them as my own.

Before you get all in a huff and puff thinking I assigned the label to myself or others and therefore also assigned the non-normie (not normal) label to my kids and those with diabetes let me be very clear. I did not.

I have spent many years being careful not to call my kids ‘diabetics’ – not to label them as different or abnormal. I have always referred to my kids as ‘having diabetes’ as in ‘she/he has diabetes’ not ‘she/he is diabetic’.

Does it matter?

To many PWD (people with diabetes) it doesn’t matter, but to my daughter when she was first diagnosed at age 9 it did. My youngest (dxd at age 2 a couple of years prior to my daughters diagnosis) being only 4 when my oldest was diagnosed had not given it much thought – he was more concerned with his lego mini-figures and action figures adventures then how he would be defined by a disease.

My daughter at age 9 (and well beyond her years in reasoning and understanding the human condition) refused to say she was a diabetic. She was willing to own diabetes but not willing to let it own her. (Those were her words shortly after diagnosis – in many ways I wish I was exaggerating my daughters understanding of things because at 14 she is often smarter than me and can outthink me in a heartbeat). Thus we consciously choose not to label her as a diabetic. We had not referred to our youngest as a diabetic previously either but mostly because of the Children With Diabetes website that I found shortly after his diagnosis – the title of the organization stuck with me and thus I had a child with diabetes vs a diabetic child. It wasn’t a conscious choice before my daughter was diagnosed.

So now where is this ‘normie’ coming from?

It came from an over-night diabetes camp that my youngest attended a couple weeks ago, my daughter attended last week and that my middles is attending right now. It is a 5 night 6 day camp in the middle of nowhere surrounded by lush forests and glazier run offs at the base of one of the Unites States tallest mountains (which happens to also be a stratovolcano and when I googled the mountain to learn more I learned how incredibly dangerous an eruption of the volcano would actually be – I may not sleep tonight – some things are best left unknown).

Getting back to ‘normies’ and camp (while trying to forget about decade volcanos and lahars).

My youngest didn’t mention ‘normies’ at all when I retrieved him from camp. This may be because he didn’t think much of it or the terms wasn’t used by the elementary kids. Prior to getting custody of our kids the parents attend a closing camp fire event. Each cabin (group of same-sex kids that will be entering the same grade in school) performs a skit or song parody. The elementary kids all did a skit and each was about 20 seconds long. The high school kids mostly all performed a song parody. In a couple of the performances I heard the term ‘normie’.

I didn’t have to ask what ‘normie’ meant – the context of the label as well as the root word ‘norm’ gave it away. I didn’t think much of it. I know what an all diabetes camp means to my kids. While at camp they are the norm so those without diabetes would be outsiders and at this camp there are very few outsiders and those that are there are volunteers who likely have a connection to diabetes such as a child, spouse, or sibling with diabetes – all campers have diabetes.

On the way home from camp my daughter received a text. When reading the text she laughed out loud. I asked her what was so funny. She told me people like me wouldn’t understand. The reason I wouldn’t understand was because I am a normie. I never did learn what was so funny. It was an inside joke and I suspect likely something about parents of kids with D being overbearing schmucks. Despite my best efforts I admit to occasionally earning that label.

The moral of this story – no matter how hard I try I will never truly understand all that goes with not being a normie.

 

 

 

 

Don’t Tell Them You Miss Them

Sadly my kids will not be attending any sleep away camps for kids with diabetes this year. but here are some things I’ve done in the past to ensure happy campers – perhaps you can use them.

  • put together a care package before you go and leave it at camp before you depart so it is delivered in a timely fashion rather than mailing it. (I did this secretly so my kids were surprised when they got it) I included various things, such as: Uno cards, decks of playing cards, 3-4 dice with notes on games to play with them, punch balls, small water toys for pool play, water balls for water play, set of jacks, small sketch book and colored pencils, note cards and stamps, business size cards with my kids contact info to give to new friends, nail polish and remover, temporary tattoos to share with friends, a white pillow case and colorful permanent markers so their new friends could sign it and draw pictures on it as a keep sake, disposable cameras (if you aren’t sending an inexpensive digital camera), water balloons, sidewalk chalk, face paint, small stuffed animal. 
  • Write letters ahead of time and leave them at camp to be delivered (I would put a sticky note on the front indicating what day the notes should be delivered) In my notes I would NEVER say I miss them. Sometimes reading that we miss them can make them feel sad. Instead I would tell them: I know you are in good hands, I know you are having fun, I love that you are there, I’m so proud of who you are, You can accomplish anything, remember to try new things, do 1 thing everyday that scares you, remember to wear sunscreen, remember to eat veggies, remember to be kind to everyone, smile for cameras (I might get to see the pictures on the camp website), laugh often, be goofy, tell ghost stories, brush your teeth, spend the day skipping instead of walking, take lots of pictures, tell your counselors ‘thank you’. I would also add some silly story of something that happened at home (even though it likely wouldn’t) for example: lizard got it the house, tried to catch it, it outsmarted me,  now I thinks it will stalk me. Or unrealistic stories with things like fairies or dinosaurs. I’ve also sent notes that were from the pets (especially one to my daughter from her cat – slept today but only for 18 hours, played with a loose string on your comforter, saw another cat in window over the sink but it didn’t say much – just stared at me, dogs are stupid, let mom pet my tummy but then bit her, the bird in the tree outside the window is mocking me, etc)
  • When packing clothes put each outfit in a gallon size ziplock bag including underwear and socks. They can put their previous days clothes in the bag when they change so dirty and clean clothes don’t get mixed up.
  • Send a headlight flashlight if possible – keeps their hands free to catch themselves if they trip walking at night.
  • Send a camel-back backpack instead of a water bottle – gives them a place to put camera and keeps their hands free from holding a water bottle while hiking – also less likely they will lose it.
  • Label everything with a permanent marker.

That’s all I can think of right now. I asked Sweetstuff if there was anything that was more useful than anything else and she said defiantly the camel back. Also she and her friends loved drawing on themselves with permanent markers and would use sunscreen to clean it off – oh and two-in-one shampoo because shower time is limited.

I hope your kids can get to camp this year. I believe with all my heart that sending our kids to camp with other kids just like them is one of the best things we can do for them. My kids still say that their weeks at camp were the best weeks of their lives.

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Pumping Air

Last week was Diabetes Camp Week! It was AWESOME.

My kids blood sugars were the best they have been in months. Why is that?  I didn’t change basals (amount of insulin that is continuously given via the insulin pump) or I:C ratios (Insulin to Carb ratios ex. 1 unit insulin for 14 grams carbs) or ISFs (Insulin Sensitivity Factors – amount of insulin given to correct a high blood sugar)? Yet their BSs stayed between 78 and 176 while at camp. That mystery is for another post. This post I want to share a problem I hadn’t run into before – well I had but I didn’t know why until now.

At camp on Thursday Sugarboy’s tubbing became detached from the cartridge of insulin in his pump. He didn’t know how long it had been detached before he realized it. Someone (he can’t remember if it was his group leader or a medic) told him to just plug it back in. Don’t get to upset with the person – I have done the same thing.

After camp we went to a water park. We ate dinner before and Sugarboys BS was 227 so he dosed for his dinner and corrected. An hour or so later he wanted nachos for a snack. He had just eaten and dosed so I let him dose for his nachos without checking his BS. At home he was 358. I thought we had not dosed enough for the nachos so I corrected him. At bedtime he was HIGH GLUCOSE. Huh?

 

I thought perhaps his infusion site had gone bad so we put a new one on. His pump said he still had 46 Units of insulin available and it was late so I decided against a new cartridge of insulin and to use the old tubbing until I replaced the insulin in the morning.

Thus, I ran a prime (push insulin through tubbing to remove any air). While priming I noticed a bit of blood come out of the tubbing. Huh?

Seeing the blood I decided to remove the cartridge to investigate. Huh?

There was no insulin in the cartridge – just 46 units of air. Thus after the insulin that was in the tubbing was used for dinner, nachos and attempted corrections my boy wasn’t getting any insulin. Turns out while the tubbing was disconnected insulin drained from the cartridge (makes perfect sense). Thus plugging back in without priming and checking the cartridge is dangerous. I did share the occurrence with the medical director of the camp and she assured me that she does instruct the medics to send the camper to the infirmary so proper procedures are followed. It was an honest mistake that even I have made. Which explained why in Feb of this year I found a cartridge filled with air when I thought Sugarboy’s site failed. At that time I didn’t make the connection that the disconnected tubbing caused the air filled cartridge – thus I called Animas and explained the air filled cartridge and they believed the cartridge was faulty and sent me a new box of cartridges.

New cartridge of insulin was installed with new tubbing and site and Sugarboy was within normal ranges in three hours. He was negative for ketones. All was right in the world of diabetes (at least in our home).

All my friends – JUST LIKE ME

All my friends – JUST LIKE ME

This week my kids (and me) spend our days at a day camp for kids with diabetes and their siblings. This is our 4th and hopefully not our last year attending CBB (my kids and I all hope we will return form CA each year to hang with all the kids and staff of CBB).
Each day camp starts out with a gathering on the hill. The kids, group leaders and medics listen to announcements, learn which team (blue and white) is in the lead for the camp cup, and of course dance and sing. Below is the camp song – I don’t know who originally wrote it as it was before our time at CBB but creative they are. It is sung to the Tune of “My Darling Clementine”
Camp Bluebonnet Camp Bluebonnet
In the hot summer sun
We are playing we are working
We are having lots of fun.
Basal, Bolus, glucose tablets
Finger Pricks and ketone strips
Everyone knows of highs and lows
And our goal is good control.
Carbohydrates carbohydrates
Carbohydrates are the key
To preventing low blood sugars
Carbohydrates are what you need.
15 grams of carbohydrates
Read your labels carefully
If you don’t treat your lows
You’ll spend camp in the infirmary!
We spend a week here, make good friends here,
Have great fun with CITs
At Camp Bluebonnet, we laugh and learn
All my friends – just like me.
Each year I walk, jog and sometimes run between the different age groups snapping hundreds (yes hundreds) of pictures each day. The camp board does have an official photographer but taking pictures of 200+ campers in 10 groups at different ends of camp (acres of camp) requires a lot of running around. Thus – I volunteer to take pictures too and share them with the camp board. It makes me feel useful and allows me to see my own kids having fun as well as all their friends.
Here are some pictures of Sweetstuff, Middles and Sugarboy from the last few days –

 

Camp Bluebonnet is more than just a fun camp. It is a week of our lives each year where we are surrounded by other kids, camp staff and parents that understand. It is a week of feeling normal. No one asks if the kids pumps are Mp3 players, no one stares when the kids check their blood sugars. No one glares at me or other camp staff if we ask a child if they feel “High”.
Diabetes camps are an essential part of our mental well being. The kids count down the months, weeks and days till the next camp. They don’t whine about the extremely hot weather, all the walking, checking blood sugars, or waiting turns. My kids and I are so grateful to the volunteers (all camp staff are volunteers – no one is paid for their time, energy or dedication). We so dearly hope we will be able to return to Texas each year to participate in this camp. My kids have each been with many of their peers for 4 years in a row now. They have built relationships and bonds that distance and time will not be able to erase.
If you are a parent of a child with diabetes and you have not yet attended a camp near you. I recommend contacting your local JDRF or ADA office to locate camps in your area. Some camps are offered at no cost, some are minimal cost and others may require you to mortgage your home (hopefully not) but all camps are priceless. Good luck in your searches – may you find the love, laughter, joy, and normalness like we have.

Lessons Learned

What you have diabetes too – we will be besties…

Day 17 Health Activist Writers Month Challenge

Today’s (oops yesterday’s – running a bit behind due to life) prompt was Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

I have learned a number of lessons the hard way including but not limited to: don’t vent in public because you never know who may be listening (that one stung like a bit**), always check your kids pockets for crayons prior to washing and drying, don’t accept friend requests on the Facebook form people you have not met in person (unless they are friends from the DOC), don’t smell a bag of frozen peas that you were using to rest your head on during a migraine while pregnant after it had fallen behind the headboard of your bed two weeks earlier (the result is instant vomiting).

However I wanted to see what Sweetstuff might have to say about this prompt. She was swamped with homework last night (she believes that her teachers conspire to deprive her of relaxation because they sometimes all assign massive amounts on the same night and none on other nights). Due to the conspiracy theory she was unable to type up the lesson herself but shared it with me so I could share it.

My Sweetstuff was diagnosed 2 years after Sugarboy and so she already knew other kids her age with diabetes due to a camp we attend that encourages siblings to attend as well. Thus, when she was diagnosed and I posted on Facebook about her diagnoses (I believe my post was something like “WTF” – although I did apologise for the abbreviated Fbomb) I received an outpouring of support from many D families. The mother and daughter of one of the those families visited Sweetstuff in the hospital since they knew us from camp. The daughter also has diabetes. They were so sweet to visit, brought gifts and offered support. The mother is absolutely wonderful and very involved with advocacy, education and the JDRF. The daughter is also great and Sweetstuff immediately thought “at least I have someone who understands and will likely be a DBFF”.

A few months later it was camp time. Sweetstuff, while not excited to have diabetes, felt good to be part of “the group” rather than a sibling of someone in “the group”. The first day of camp went well, she and the other child buddied up and had a great day. However day 2 did not go the same. The other child snubbed Sweetstuff and chose to hang with other girls who also ignored her. Sweetstuff still had a blast at camp and soon connected with a boy that is currently her absolute DBFF but at the same time didn’t understand why the other child acted the way she did. The child ignored Sweetstuff the rest of camp.

The child doesn’t live super close or go to the same school so the girls didn’t have opportunities to build their relationship over the next year. At camp a year after the first camp it happened again. The child was buddy buddy with Sweetstuff the first day but then ignored her the rest of the week. Thank goodness for Sweetstuffs DBFF (the boy – I will have to ask him what he’d like his non De plume to be since he will likely be mentioned frequently in the future). It was another fantastic week of camp despite hurt feelings.

A month later would be Sweetstuff’s first week attending Texas Lions Camp for kids with diabetes. While I was a nervous wreck (6 days of no contact from Sweetstuff although I could write emails to her) Sweetstuff was thrilled to be attending a sleep away camp where she would meet other girls with diabetes. The mother of the other child also registered her daughter for the first time and asked if we should try to get the girls placed in the same bunk house. Knowing what I knew about how the child ignored Sweetstuff I tactfully suggested we let things alone and allow the girls to meet new friends. The mother (with great intentions I am certain) called the camp to request the girls be together. The other child while in the same grade as Sweetstuff is nearly an entire year younger – thus the camp placed Sweetstuff in a bunk house with younger girls rather than move the other child up to the older girls. The same scenario played out – the first day the child was buddy buddy with Sweetstuff but after that she ignored her and on a few accounts was ugly to her. Sweetstuff did meet a number of excellent young ladies who she adores despite the attempts by the other child to “out” Sweetstuff.

Last summer at the day camp Sweetstuff decided not to fall prey to the games the other child plays and choose to be cordial but not buddy buddy wither her. She had a fabulous week. A month later Sweetstuff attended TLC again and I had asked the camp to put Sweetness with a friend she met the year prior and said nothing of the other child. Sweetness was not in the same bunkhouse with the other child and her DBFF (the boy)  also attended so it was, according to Sweetstuff, the best week of her life.

Sweetstuff’s lesson learned – just because someone has diabetes too doesn’t mean mean they will be the ideal friend or a friend at all. To quote the Dblog extraordinaire Kerri S “Diabetes doesn’t define me, but it helps explain me”, diabetes alone is not enough to build a friendship, all the usual elements that create lasting friendships must also be present – diabetes does sometimes open the door though.

Sweetstuff with her DBFF

Sweetstuff with CDE extraordinaire – unrelated but fun to add cus she rocks