A family living well with type 1 diabetes.

Posts tagged ‘life with diabetes’

The Last Resort.

Jenna seemed fine at bedtime.

The usual routine was playing out — bath, hair wash, a little family TV time before teeth are brushed, hands washed and stories are read. Then the final step before goodnight kisses are exchanged — the blood sugar check: 4.2 with a truck load of insulin still on board from supper.

A couple of carb tabs and another story later, a second check revealed a 2.8. This was NOT what I was expecting. Jenna has seldom had a stubborn low requiring multiple treatments. It has happened, but it’s rare, thankfully. So I gave her three more carb tabs, suspended her pump and stayed with her for snuggles and soft words of reassurance. But there was no hiding my concern from Jenna who is as smart as a whip with intuitive abilities to boot. She knew there was reason for concern. She tried to be silly to downplay the situation. I wasn’t in the mood to be silly back even though I knew she was just trying to cope the best way she knows how. She wanted me to join in this silliness like I often do. Anything to give her the sign that she was okay–that she would be okay.

I checked again and as I awaited the result I closed one eye while keeping the other firmly fixed on the meter (something I do when I’m afraid of what the number might be) and repeated out loud in a quiet chant, “Please be a good number. Please be a good number. Please be a good number…” BEEP. 2.4.

This is when mild concern rounds the corner on two wheels to desperate panic. That’s the wrong way, damn it! WRONG WAY!! If the carb tabs are not working, what the hell else is there?!

Glucagon. My final weapon against this most terrifying of D-demons. But before I proceeded, I posted on facebook for some much needed reassurance from my D-peeps. (I love you guys.)

Melissa, a person with diabetes and a mom, was the first person to give me a virtual pat on the back and encourage me: “You can do this, Sherry. Do whatever you have to.”

It was precisely what I needed to hear, even though the moment I read it I had to leave the room so Jenna wouldn’t see me bust into a full blown cry.

I went straight into my bedroom closet to where I keep the glucagon along with all of the diabetes supplies. I retrieved the kit from the travel case that accompanies us on all overnight trips away from home while flashbacks of the last time I had to employ this lifesaving intervention pelted my conscious mind like hail stones falling from a slate black cloud.

Blinking away the tears so that I could see what my hands had to do, I pulled out the contents of the kit on my bed and began reconstituting the white powder in the glass vile with the pre-filled intramuscular needle that comes with the kit. I remember thinking that at least I wouldn’t have to use that needle to inject Jenna since mini-glucagon dosing is done with a subcutaneous insulin syringe instead. That would be little consolation to Jenna, however.

I drew up the six units of glucagon (one unit per year of age) and with the needle hidden behind my back I entered Jenna’s bedroom once more. Jenna was upset now and kept telling her Daddy that she was tired and just wanted to go to sleep. She knew I had something in my hand and she knew what it was.

“No mommy! No mommy! Please NOOO!!”

I did what had to be done and left the room again to stomp the shit out of my bathroom floor while letting the tears come.

It wasn’t the fact that I had to give Jenna a needle. I don’t have a problem with that. It was giving her something I had never given her before that really upset me. Glucagon is a last resort. It is harsh. It gets the job done but it can really kick the shit out of the person receiving it. Vomiting post glucagon is not uncommon. How would she react to it? What will the rest of this night bring?

Jenna was craving toast. Before I gave her the glucagon she kept saying she smelled toast and how good it smelled to her. So as a way to wrap up this upsetting end to an otherwise great day, I invited her and her sister back downstairs for a late night, post bedtime toast snack.

Later as I was settling Jenna back in bed with a post glucagon blood sugar of 9.9, I told her she was okay and it was safe for her to go to sleep now. Jenna became emotional. She hugged me and told me how thankful she is to have a nurse for a mom who “…know[s] how to make it all better.” I told her how lucky I am to have her for a daughter and how amazing I think she is.

“I think you’re amazing too, Momma.”

We hugged more and then Jenna told me with her chin quivering and her eyes flooded with tears that when she grows up she wants to marry a man with type 1 diabetes so that they can take care of each other. This glimpse into Jenna’s thoughts made me realize just how much she gets the seriousness of her diabetes and how alone she feels at times facing the challenges diabetes presents.

I think this is one of the most heartbreaking aspects of being the mother of a child with diabetes: to watch her gradually lose her innocence and awaken to the reality of life with a disease that never sleeps and can turn on you without warning. She is thinking about her future with diabetes. And not just tomorrow, but 20 years down the road! A six year old little girl who still loves to play dress up, play with dolls, skip, ride bikes, blow bubbles and play in the mud should not have to worry about such things. And yet, a part of me is relieved that she is aware and gets it, as much as it hurts my heart.

I’ll be up several more times tonight — Jenna’s blood sugar is lunar bound and I just heard her awaken and take a big long drink from her water bottle. Last check was 16 mmol/l. This roller coaster ride is far from over.

*Nothing here should be construed as medical advice. Please consult your healthcare team of professionals if you have any concerns about your or your child’s diabetes.*

Super Powers? Don’t All Moms Have em?

The prompt: If you had a superpower — what would it be? How would you use it?

When I was a kid, my Mom could make it all better. Somehow, her hugs and kisses just did. Even if she really didn’t actually make it better — for me, just her TLC was enough to make me feel better. It is the magic Moms possess.

Kids want Mom when they don’t feel well.

Jenna doesn’t feel well when she has a high or low blood sugar. This means she doesn’t feel well on a daily basis. She musters through, sometimes without missing a beat and no one is the wiser. But other times, the glycemic ride from hell can knock her flat on her little scar tissued posterior. She wants hugs and lots of em. She wants snuggles with Mom on the couch. She wants a gentle voice telling her she is going to be okay. She needs to feel safe and comforted. And during those times there is no place on earth I would rather be than with my little girl snuggled in my arms.

Superpowers? I’m a Mom. I’m good to go.

Jenna had a low tonight at bedtime. I employed my ‘superpowers’ to help alleviate the symptoms. Also, three carb tabs.

Health Time Capsule

For the month of April I am participating in the WEGO Health Activist Writer’s Month Challenge. This means I shall attempt 30 straight days of blog posts–one for every day in the month of April. I’m not going to lie to you, I have my doubts that I can pull this off. In fact, I’m already off to a less than stellar start, given that I’m a day late with my first post.

But that doesn’t matter. I will give it my best shot and aim to make a quality contribution to this event rather than push for quantity that may be lacking in interest and passion. I enjoy the challenge of writing from prompts but if I’m not feeling it, I’m not going to post something that I’m not proud of or pleased with. So on that note, here’s the first prompt and my humble submission follows:

The prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

Hello people of the future. I am the mother of a child with type 1 diabetes. I’m sure you have heard tell of this disease of the past–a heartbreaking, life-long sentence of finger pokes, injections, blood draws, doctor’s appointments, high and low blood sugars and the ever-present fear of devastating complications. It most often struck our young children, suddenly and without warning. But no one was safe, really. You are very fortunate to live in a time when this disease is merely a part of human history.

Type 1 diabetes was physically, emotionally and mentally exhausting for the people who lived with it every day. The demands of diabetes were at times immense. Imagine having to check your blood sugar by poking your finger and summoning a drop of blood anywhere from 8 to 12 times a day or more. Imagine having to count every carbohydrate you consume and calculate the dose of insulin needed to inject to ensure your blood sugar doesn’t shoot to the moon. Imagine having to have access to a considerable arsenal of medical paraphernalia at all times to stay healthy and alive. And imagine that no matter how diligent you work, no matter how hard you try you often don’t get it right. High and low blood sugars were a given–a part of everyday life. That’s just the nature of this beast.

I have included in this time capsule a copy of the blog I started and kept for years after my daughter’s diagnosis so that you might know more of what this disease was capable of and how it affected entire families. I have also included all of the items type 1 diabetics required to be at their disposal 24 hours a day, every day to live. They include:

  • blood glucose meter
  • blood glucose test strips
  • lancets
  • lancing device
  • carb tabs
  • blood ketone meter
  • blood ketone test strips
  • urine ketone test strips
  • insulin
  • insulin syringes
  • insulin pump
  • insulin cartridges
  • infusion sets
  • batteries
  • sharps container
  • continuous glucose monitor

We lived in an age that saw technology propel forward at a dizzying speed! It was incredibly hard to keep up with the latest technological gadgetry pertaining to communication and entertainment. One could go broke trying. Yet the diabetes devices and pharmaceuticals of our time were shamefully behind the times.

For the last 30 years of the 1900’s a cure was repeatedly promised to be “just steps away” or “no more than 5 years down the pike.” Finally, doctors stopped making these promises with such reckless abandon. People got wise … and maybe a little cynical too. The focus started to shift more toward treatment and prevention–not solely on a cure.

To be personally affected by type 1 diabetes is to experience a full range of emotions to their most extreme degree. It isn’t easy to cope at times. It is difficult to trust that those in the business of finding better treatments and cures are really committed to looking for that which will ultimately put them out of business.

But at the end of the day, it’s all that the people living with diabetes and those who love them have.

We must believe.

I must believe.

This is why I have written this with optimism and hope. You must know what a world without type 1 diabetes looks and feels like. In 100 years, surely the break-neck speed at which wireless communication advanced in our day finally found its way to the treatment and curing of chronic and deadly diseases such as diabetes.

…all the walks, marathons, fund raisers, the billions of dollars raised…

We as a species must have gotten our priorities in order by now … haven’t we?

I try.

I sit quietly with my cell phone to my ear, listening while Jenna takes instruction from her support worker on what numbers to program into her pump to give herself her morning snack bolus at school.

“Okay. You are going to eat 36 carbs, so make that number a 36. Three – six.”

“Okay. Three – six?”

“Yep.”

A few seconds pass while Jenna presses the up button on her pump. When the pump flies past her goal (the numbers tend to get away from you if you just hold the button down which can be frustrating) she presses the down button to make the number what it needs to be.

“Oops — You went past.”

“I know…”

“THERE! That’s it. Okay, now you press OK. Good. Now you are going to enter your BG. What was your BG, Jenna?”

“14.6.”

“Right. Good job. Okay. So you make that 4.4 a 14.6.”

“Okay. 14.6.”

“That’s right.” More time passes and I listen to the din of children in the background chatting and laughing while they eat their snacks as Jenna toggles up to enter her rather high pre-snack blood sugar reading into her pump. The seconds start to feel like minutes. I know Jenna also hears the other kids — her friends. I know she wants to join them.

“Oops. You went way past, Jenna. Okay. Focus, my friend.”

“Ooops!!”

I hear a sigh of frustration from my little girl. I feel my jaw muscles tighten and I take a sympathetic deep breath for her. I talk to her in my mind. I don’t want to add to the frustration by chiming in. Just stay calm, Jenna. Focus.

Then Jenna’s support worker gives further encouragement,”C’mon, Jenna. Look at your pump. You’re almost there. 14.6.” I imagine Jenna is looking back at her classmates who don’t have to jump through such tedious hoops before they eat their snacks.

Then, in frustration, Jenna blurts out, “Why don’t you just do it?”

Her good-natured support worker retorts, “Ha! Because it’s your job, missy!”

And there it is.

It’s Jenna’s job to give herself her insulin, a life-saving (and potentially lethal if overdosed) drug. She’s five years old and she must do this. She doesn’t know that her support worker isn’t allowed to even touch her pump, let alone give her insulin.

Jenna often doesn’t want to be bothered with bolusing herself for every carbohydrate containing snack or meal she eats. She has worn an insulin pump since she was two years old — far too young to administer her own insulin dose. Oh sure, she would, on occasion press the OK button to initiate the actual bolus after I or her Dad had done the programming. But Jenna has been spared the monotony of bolusing for most of her diabetic life. She has been doing her own snack boluses at school for several weeks now and overall, she has rocked it. And I know that the more she does it, the easier it will be and the faster she will get at it.

Even still, no matter how fast she gets at it, it’s not what most people have to do before taking in nourishment. And it’s always prefaced by the ubiquitous blood sugar check. There are just so many damn HOOPS! Is it any wonder I worry about what the future holds?

I remember in my nursing training, when we were covering diabetes, we were taught that during the teen years it is common for teens to rebel when it comes to the necessary minutia they must constantly carry out to stay healthy. It is so common, in fact, that the training we received in caring for teens with diabetes focused heavily on our verbal interactions with them and the psycho-social implications of this disease on this particular age group. And then, as if to punctuate this theory for me, during my corresponding practicum for this unit, I was assigned to a teen with diabetes who had been admitted with diabetic ketoacidosis and was undergoing further patient teaching as part of his recovery.

It was a long time ago, and I don’t remember much detail, but I do recall getting a sense that this teen was struggling. The struggle was just as much emotional as it was physical. He seemed sad. Perhaps even depressed. I felt so inadequate. I felt like I knew nothing of what this young person was going through. I felt ineffective and in over my head. I was only in my early twenties at the time and this diabetes deal that I was just learning about seemed like such a heavy burden for any person! For a teen? It must feel like the biggest bullshit, shitty hand anyone could ever be dealt. How on earth could I be of any help to this person? I was young, in training, and knew nothing of the ever-present, constant, worrisome, unpredictable, obtrusiveness that is diabetes.

I was a good student and I imagine I did my best with this patient and tried hard to NOT sound like I was reading from a script in my verbal exchanges with him. Honestly, I think I was relieved when my assignment changed. But the sadness that was so tangible stuck with me. I knew this young man was dealing with demons I knew nothing about.

And now here I am, the mother of a child with diabetes. I don’t need to tell you I have my fears. I work hard at keeping them in check. I try to look at my past professional experiences with diabetes not so much as warnings of what lies ahead but as wisdom, if put into proper perspective. I keep reminding myself that just because it is common enough to be taught in nursing theory classes and just because I happened to be assigned to a teenager recovering from diabetic ketoacidosis due to lack of self-care from typical teenage rebellion, doesn’t mean my daughter will do the same thing.

But I know how hard this disease can be. I know how exhausting and maddening it is. I know how much it can mess with your head. I also know how much being a teenager messes with your head. I’ve seen these two forces collide. I’ve seen what can happen. Teenage years + diabetes = the perfect storm for noncompliance (a term I now loath but is all too common in the medical world) and disaster.

I try to not worry so much about the future. I read about other people’s experiences and try to glean from them what is useful without causing myself too much unnecessary, premature aging worry. I try to stay positive. I try to have faith in myself and my amazing, strong, smart little girl. I try.

… but it’s hard sometimes.

Sickies in a Blanket.

Mommy and Jenna,

Both sick with a flu,

Snuggled together ‘neath a blanket

Or two.

Fevers and coughs and aches

We both share,

But Jenna has ketones;

They’re trace–but still there.

 We’re sipping fluids-

We’re resting and snoozing.

The cartoons on the TV

Are not of my choosing.

For this mommy to worry

Is really not new,

But to fret in this febrile state…

…ah…AH…ACHOOOO!!

I can handle a lot,

Countless times I have shown,

But a little back-up today

Would beat D-parenting alone.

That’s all I got. *sniffle*

Stephen Richert: A Man Living Vertical.

A few months back I “met” Steve Richert on Twitter. He commented on a link I posted–completely non-D related–and we got chatting. He introduced himself and told me about what he was planning to embark upon come the new year. I was instantly intrigued and impressed.

Steve is an avid rock climber who has started an initiative called Project 365. He plans to climb for 365 straight days in some of the most extreme environments our continent has to offer. With the help of his wife, Stefanie, he will document the journey.

Oh! And he also happens to have type 1 diabetes.

People like Steve fascinate and inspire me and I knew I had to keep in touch with him and watch his progress while he attempted to achieve his goal. As much as I want to believe in a cure for Jenna, the reality is that she may very well have to live with this disease for the rest of her life. I certainly don’t want her to sacrifice a single dream or ambition using diabetes as an excuse. Fortunately, there is no shortage of inspiring people in the diabetes online community and Steve is a shining example of just such inspiration. He is living proof that a person can do anything, be anything and live a rich and fulfilling life with type 1 diabetes. His determination and courage give me hope.

In mid January Steve and Stef began their 365 day mission. In between climbs Steve found time to answer a few questions I had for him and I am thrilled to share his words with you here:

* * * * *

Sherry: How long have you had diabetes? Would you mind sharing your diagnosis story?

Steve: 13 years as of January 16 2012. I was away from home, living in alaska at age 16. I came down with what felt like the flu and it just kept getting worse instead of better. Blurry vision, thirst, headaches, loss of coordination and I was constantly fatigued. After about a month of this I wound up having seizures and being hospitalized with encephalitis–which resulted in a concurrent diagnosis of type 1 diabetes. There were two days that I completely don’t remember and I just woke up in the ICU. I had been under an incredible amount of stress and it was all pretty disorienting–but once I got out of the hospital, it felt so good to not feel like complete shit, that I welcomed the application of insulin and the whole learning process that went with it.

Sherry: What prompted you to decide to embark upon this incredibly ambitious mission of 365 straight days of climbing in some of the most extreme terrain North America has to offer while managing your type 1 diabetes and what do you aspire to accomplish?

Steve: I want to empower people with type 1 diabetes and other chronic illnesses to think big. To not let a medical condition constrain their dreams–also I want to demonstrate the benefit of being active and eating a fresh, high quality, plant based diet and connecting with nature. Doing more with less (drugs/meds, “stuff”) is both possible and beneficial.

Sherry: You and your wife have taken some risks to make this adventure possible. You have sold almost all of your possessions and are using your savings to help finance this mission. Can you explain what emotions you experienced while you went through the process of preparing for this year long journey? Was there ever a “HOLY SH–! Are we crazy?!” moment? Any epiphanies?

Steve: Risk is an inherent part of life. Living in a conventional setting with an unfulfilled dream in our heart was deemed to be a bigger risk–so we decided to at least try. I think failure and struggle are vital components of human development that we as a society have managed to avoid to our great detriment. I am ok with failing or having to pick up the pieces if the money runs out. You definitely have to go all in and commit fully or else what’s the point? No one lives forever–so do what you can, while you are able!

Preparation has basically been DAYS spent on the computer, wishing I could just go out and climb. Trying to make other people care about this project. The most emotionally taxing part of this has been leaving our home and realizing that if this fails we literally have no home to go back to. Leaving our cat has been SO painful because in our absence he hasn’t adjusted to his new home and has run away several times for a week at a clip with no contact with anyone. It may sound weird but he is my little friend, not just a pet. I have never been a very social person and he (we call him Mr. Kitty or Mr. Bear) has always been there for me when people let me down and it rips my heart out knowing tht he is scared and feeling abandoned. I try not to dwell on that part.

Holy Shit moments? Every single day. Especially at night when your mind just goes to those dark places.

Epiphanies…yes…the little things, the small steps–those are where we succeed or fail ultimately in the big picture of things.

Sherry: You are on injections (pens?). Have you ever been on or considered using an insulin pump?

Steve: I am on pens–never been on a pump. I am not against the idea of a pump but I am used to taking shots and I don’t mind it. I am a fan of simplicity and the fact that it is a lot more affordable. I was offered a sponsorship deal from a pump company that would have cost me 400 bucks a month…needless to say, insulin pens started looking a lot better! I am sure that there are advantages to both–I am just more clued in to the advantages of my system because that’s what I know.

Sherry: As a substitute pancreas myself, I have a keen interest on the specifics of how you plan to manage all that diabetes will, no doubt, throw at you while you are dangling from a cliff in the wilderness. What challenges does having type 1 diabetes present while you are climbing and how do you plan to address them?

Steve: Type 1’s biggest challenge is the variability of insulin sensitivity that goes with varying levels of activity. Also, not being able to carbo-load before a big day of climbing can make it a bit tougher to recover AFTER that big day. Otherwise, you just have to be consistent and check a lot. I find that the quality of the foods I eat makes a HUGE difference in the consistency of my sugar. Low GI foods like Clif Bar Builders Bars and raw almonds keep me from spiking or tanking and give me energy when I really need to pour it on. Basically though I have found that everything is based on cause and effect. If you want to be all ready to roll in the morning, you have to take care of your meal the night before. Consistency is key.

I have redefined my relationship with food as part of being a type 1 diabetic–which is something I see others struggle with or refuse to do. That is their choice, but I can tell you without a doubt that I could not do what I do if I was unwilling to view food as fuel rather than entertainment or comfort. That is part of what I want to communicate to others throughout this project. YOU have the power–no, it’s not easy, but it’s POSSIBLE and you will be better off for taking control of yourself!

Sherry: Although I have never rock climbed before, I would think that it takes a well-planned, methodical, controlled approach–much like managing diabetes does. And yet the unexpected can, and indeed does happen with diabetes. Can the same be said of rock climbing? Do you feel the mental and emotional coping skills you have learned from climbing reflect or enhance your approach to managing your diabetes and vice versa?

Steve: Yes. Climbing is not about some RedBull commercial with a generic heavy metal riff playing in the background. Climbing is about self control, discipline and simplicity. That is the same approach that I have chosen in managing my diabetes and the two are inextricably linked, in my mind. Also, both have risks as a very real part of the equation–which is great motivation not to be lax.

Sherry: What suppplies do you pack with you while you are climbing and how do you tote them?

Steve: I usually take a pack of glucose tabs but I have never opened them. I think I have eaten 2 of them in 13 years. I avoid shooting fast acting insulin when I am climbing–I let my activity lower my blood sugar, which keeps the hypos reasonable and treatable with normal snacks. I carry a couple Clif Builder Bars and my meter–depending on the length of the climb, I may leave the meter down at the base of the climb. If it is one long route that will be an all day affair, then I will bring a small backpack that has enough food to last for several days, as well as my meter. When I was guiding, I would always have plenty of Clif bars to give to my clients because I always pack significantly more than I would eat in a given day.

Sherry: The physical demands of this project will, no doubt, be a challenge to manage and your diet will, undoubtedly, require as much careful consideration as your insulin dosing. Can you explain a little about what you will be eating throughout the year?

Steve: As much whole foods as possible. This means food whose identity can be discerned through simply looking at it, not reading a list of ingredients. Fresh, Raw (when possible). Predominately vegetable matter.

Breakfast: usually raw almonds and some form of oatmeal. Possibly part of a Builder Bar too or a little cheese. Eggs with mushrooms are an option too since eggs in their shell will keep for a good amount of time if you are careful with them. Onions, spinach, work great as add-ins.

Lunch: raw nuts, seeds, a salad (yes greens keep without refrigeration if you are creative!) carrots, crackers, Builder Bar, tuna fish with mustard or sardines, trail mix.

Dinner: salad, veggie stir fry (cabbage, broccoli, sprouts, peanuts, hot sauce, black beans) lentils, whole wheat pasta, raw almonds, sweet potatoes, garlic…and so on.

Fruits are always good too–apples and pears keep magnificently, strawberries…etc.

A few miscellaneous items I have recently explored are kale chips, almond butter and nori–and OH MY GOODNESS I am officially addicted. Sadly I am not going to be able to afford that stuff on a consisten basis, but it is super healthy and GOOD when I earn a treat!

Sherry: The publicity you are receiving by doing this gives you a great opportunity to send a message to other people with diabetes or other chronic diseases. What is the message you want to send?

Steve: YOU have the power to be healthy. Diabetes is a challenge but it does not have to stop you from being healthy. It is our responsibility to avoid adopting a victim mentality.

In the words of Captain Sub-text, “ A little suffering is good for you. If you embrace it instead of bitching, you will be better off for it!”

* * * * *

Thank you, Steve, for sharing your story with me. You ROCK! (pardon the pun. ;))

For more information about Project 365 please visit the website here. You can also check out (and “like”) Steve’s Facebook page where there are many more mind blowing pictures to view!

Crafty D-Crafting.

So I’ve been busy helping my girls create homemade Valentines to hand out in class next week. I blame Pinterest for this sudden blast of creative ambition. If you haven’t yet familiarized yourself with Pinterest, be forewarned, it is habit forming. As if any of us need yet another online time-suck! But the cool thing about it is you can get some really neat ideas for crafts and art projects (and a plethora of other topics).

One such project that just dazzled and amazed me was this one:

You take a picture of your child holding out his or her hand as if clutching a lolly-pop, then use some sort of photo editing software to add text and embellishments, print it off, cut slits above and below the fist and feed a lolly through! Is that not the coolest thing?!

So after I had my Valentine fun with this idea, I got to thinking — how could I make use of this idea in a D-awareness sort of way? It didn’t take long for me to come up with this:

 

I think these would be cool to make bunches of and hand out at school events during Diabetes Awareness Month in November or any time there is an opportunity to raise a little awareness. What a great way to educate people about how people with diabetes can have treats too and are not relegated to a sugar-free existence. In fact, this myth is a dangerous one that really needs to be dispelled. We know too well how important and, indeed, life-saving sugar can be to a person with type 1 diabetes.

This project is more simple than it appears. Go ahead and give it a try, whether it’s to create Valentines or awareness!

 

Enabling Independence.

Jenna is almost half way through her first year of school. She loves school! Kindergarten has been fun, exciting and full of growth and learning, not just for Jenna but for me as well. I’ve come quite a way from the worried and nervous mom I was at the start of the school year.

We have a routine now and it seems to be working quite nicely. We have found ways of doing things to ensure that Jenna has virtually the same opportunities as any child does while attending kindergarten and still remains safe. I can, in part, credit her student support worker (SSW), her teacher and the school for this success.

Oh sure, we’ve had a couple of hiccups along the way. We are, after all, blazing a bit of a trail here. There aren’t many children with diabetes as young as Jenna and on an insulin pump in the school system here. And every family has their different ways of managing their child’s diabetes. But with good communication and the setting aside of some egos, we (myself and the staff) have managed to maintain respect for one another’s perspectives while achieving our common goal of ensuring Jenna is safe and happy while at school.

At the start of the school year we set a goal for Jenna to start doing some of her own bolusing by Christmas while she is at school with the supervision of her SSW and with my telephone guidance. Presently, I go to the school twice a day, for morning snack and lunch to administer her insulin doses as no staff members at the school are permitted to do so. However, Christmas time is never a good time to initiate a new plan. So we all agreed to hold off until the new year when the dust of the holidays has settled and we are back into the groove at school.

So here we are, well over three weeks into the new year and back into our routine. Jenna is no stranger to bolusing herself with either my or her dad’s supervision. We have handed her her pump and walked her through the process on many occasions. But her motivation is lacking because, well, she’s a kid and she doesn’t want to have to take the time to engage in such tedious matters as inputting carb info and blood sugar results into a mini computer to receive an insulin dose recommendation then input that number and press GO prior to eating a yummy snack — not when Mommy can do it in a third of the time while Jenna can dig in and enjoy social time with her friends.

What kid would want to do that?

But, of course, she has to do that. This is the next small step in Jenna’s slow journey toward independence. So we’ve developed a little incentive program for her at school with the help of her teacher. Jenna is expected to give herself her snack bolus three times a week, on Mondays, Wednesdays and Fridays, with supervision from her SSW and my counsel via mobile phone. She will receive a check mark on a special chart that her teacher has devised and at the end of the week, provided she has met her three-check goal, she gets special play time privileges and she gets to chose a friend to join her for this reward.

Sounds great, right? Well, we shall see. This plan is to be implemented today. In fact, I am going to park outside the school in about a half an hour to do our first phone bolus and still be close enough in case any unforeseen issues should arise. I slid the little, bare-bones cell phone we purchased last week into Jenna’s lunch kit this morning, ready for that first call. I will keep you posted.

The other little dilemma was, how do I provide a mobile phone for Jenna to use at the school to communicate with me for bolusing without it seeming to my 8 year old daughter –who is already asking, and has been for some time now, when she will get her own cell phone– like I am giving my 5 year old her own cell phone? I have had to be careful of language; I don’t refer to the cell phone as “Jenna’s cell phone”. That would give the wrong message to both girls. I explain that it is Mommy and Daddy’s cell phone. Of course, it was a bit of a hard sell for Jaz. But she does understand. Incidentally, Jaz has been bolusing Jenna lately on some occasions as well, and she is a pro at it. Yes, things are progressing nicely. My little girls are growing up.

It’s bittersweet, really.

Update: SHE DID IT! She just gave herself her first bolus without J or I present! I heard her little voice over the phone and I distinctly heard pride as she input the info and pressed GO, giving herself her insulin dose without me there. And I find myself oddly emotional about this rather huge step toward her independence. It reminds me of the first time either of my girls tried solid food after being strictly breastfed. Ah, but it’s all good. She’s taking the reigns. Slowly but surely, she is taking charge. :)

D-Feast Friday From Jenna To You.

I haven’t posted a D-Feast Friday post in a long, long time.  I haven’t posted anything in quite a spell. I have been giving my undivided attention to my family these past few weeks. A recent move closer to town (read: closer to EMS) occupied much of our time and energy at the start of December. Then there was the whole Christmas to-do … life was just too intense for me to find time to focus on collecting and composing thoughts worthy of your valuable reading time.

So I took a little hiatus.

But it was only a matter of time before I found my way back to my laptop to share little snippets of life – our life – with diabetes tagging along.

Jenna requested this snack last night before she went to bed. Actually, to be completely honest, she was hoping for a bedtime snack, likely on account of heading for a scary low from a straight up bolus for supper that, in hind-sight, should have been a combo. But when we realized this, she was already tucked into bed with heavy lids. Carb tabs to the rescue instead.

This is what her palate fancied:

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What we have here is two toasted slices of whole grain bread with a skiff of butter, natural peanut butter and thinly sliced, organic, gala apple. When she requested it, I told her it was too late for a snack (unaware of the low that was lurking in the wings) and that it sounded like an excellent choice for breakfast the next morning. Reluctantly, Jenna agreed to wait until morning to have this considerably healthy and, I must admit, tasty treat. I ate it for lunch myself today! It really is lovely.

I don’t know where Jenna got the inspiration for it. Perhaps it was the few times I have offered her and her sister a half apple with peanut butter for a snack that gave her the idea. But I’m more than a little impressed with her choices with regards to both the satisfying taste and the nutritional merits of the dish.

I figure you can tweak the recipe any way you like; you might want to omit the butter or substitute the peanut butter for another nut or seed butter, or use another kind of apple, or even go with a pear if you prefer! If you are celiac, you can go with a gluten free bread for toasting. However you want to alter the recipe to suit your needs and palate, feel free. Enjoy!

Oh. And Happy New Year. I’ve missed you. :)

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