Sunshine at almost 1 year old
For my family, food really is the centre of our world. It dictates our activities, our playdates, our potlucks, our moods, our health, our survival. It is all encompassing, affecting everything about our day from the moment we wake til the moment we go to sleep, and then during the night, too. Without food, we may all die, but with food, my daughter may die, also.
You see, my 5 year old daughter has type 1 diabetes and for her, food may be, on the one hand, life sustaining and nourishing, or else it may be poison. Without insulin, Sunshine's body has no way to convert the carbohydrates in food into the energy we need to stay alive. And so we must be at the ready, 24/7, to deal with any fluctuations in her blood sugar.
Sunshine in the hospital when she was diagnosed, eating her last meal before we began carb counting every morsel that passes her lips
a month's worth of supplies to keep Sunshine alive
a glucometer measures her blood sugar levels
Everything to do with food revolves around Sunshine's blood sugar level. We test her up to 20 times a day by poking her fingers with a sharp little razor-like lancet. A small glucometer measures the blood sugar level and then we can determine how much insulin will be needed for what she is about to eat. It is a fine balancing act that constantly requires attention and revision. During any given day, Sunshine goes between the two extremes of low blood sugar (she needs sugar fast!) and high blood sugar (she needs insulin which can take a while to take effect). It is always up and down, that is the nature of blood sugars, including those without diabetes. However, the blood sugar extremes in a person with type 1 diabetes can result in death, in a matter of minutes. On a normal day, we may manage to keep Sunshine in range for some of the day.
When a person with T1D has blood sugars that are out of range, they feel miserable ~ blurry vision, stomach aches, nausea, headaches, disorientation, shaking, thirsty, hungry, low energy, needing to pee a lot. For most of us, these symptoms would make us feel lousy, irritable, or angry. For a young child who cannot understand what is happening to her, it is terrifying and frustrating. She becomes upset for long spells without consolation. Every day. Several times a day.
Sunshine is waiting for the banana (on our scale) because her blood sugar is too high to eat it right away (2012)
When Sunshine was first diagnosed, we began with injections. We were facing up to 15 or 20 injections a day, whenever she ate anything. I was so completely overwhelmed and sinking fast! I felt life was so backwards that my little 2 year old was being forced to eat the food she was given (at a specific time of day, not necessarily when she was wanting it) because the insulin was in her body and needing to convert the carbs into energy...so we needed to give her body the carbs, no matter what! Of course, she was still a toddler and very frustrated, so the precisely counted and weighed and calculated food was thrown onto the ground where I would quickly scrape it off the floor and count and weigh and calculate it again to see what she had missed, and then give her a juice box to make up the carbs!!!! All the while, I felt sick that this was exactly the opposite of how I wanted to raise my children, particularly my daughter...going against listening to her own body to feel what it was wanting but being told what was needed ~ and it had to happen right away.
a sugary juice brings up a low blood sugar while going for a walk, one year post-diagnosis
The insulin pump changed so much of our life with T1D for the better. Food is less of an issue for her, it is much more natural that she eats when she is hungry and stops when she is full. We still cannot go anywhere without her diabetes kit that contains a few juice boxes and an emergency glucagon (sort of like an epi-pen for low blood sugars).
Sunshine's insulin pump ~ in purple! We change the site (which is a needle where the pink port is on her belly) every 2-3 days...it takes two of us to do a set change
Over the last three years since Sunshine was diagnosed, I have learned so much. My husband and I, just as the doctors predicted, have become expert researchers, doctors, nurses, therapists, and nutritionists. We function on waking up every few hours all night long to do blood sugar checks...every single night. We calculate carbohydrates in meals in seconds flat. We can use her insulin pump in the dark with a flashlight held between our teeth. We can rouse her up from a deep sleep and administer a juice without her waking up...or her brothers. We can show her that life is so much more than living with a life-threatening illness ~ it is simply something she (and we) have to do. We cannot drop the ball on this...ever. There are no second chances.
While these past three years have been so extraordinarily challenging on so many levels, one thing that was easy to adjust to were the doctor's recommendations for feeding our family with diabetes. Already, we ate three good meals a day with two snacks in between. Already, we ate very little sugar. (And I want to add here that a person with type 1 diabetes can, in fact, eat anything anyone else eats, they just have to make sure they get insulin to cover the carbs in whatever that food may be. Cakes, popsicles, pasta, pizza are all fine as long as insulin is taken beforehand. It is different for a person with type 2 diabetes which is the more commonly known type of diabetes, often simply referred to as Diabetes. For them, a strict diet may be all that is needed to manage their symptoms...this is impossible with type 1.)
For the most part, I still avoid feeding my kids sugar, but this mostly has nothing to do with T1D and everything to do with good nutrition. I make one dessert a week for my family, usually on the weekend. Sunshine actually doesn't like sweets too much and prefers her pancakes or french toast with a huge dollup of plain yogurt and some frozen fruit stewed up on the cookstove. I make most of our food from scratch including breads, cookies and treats, soups, sauces, and all our canning.
I calculate the carbs in everything I make...and for canning, I write it on the label for easy reference
in the freezer, I keep snacks and pieces of birthday cake handy in case of a last minute outing
My two boys are also affected by T1D...it truly is a family's diagnosis. Because they were both so little at Sunshine's diagnosis (6 months old and 5 years old), it was easier for us to have everyone wait to eat if a high blood sugar reading needed to come down. My oldest son is now 8 years old and he is much more understanding and patient, but Sunshine and Huckley still expect equality with their snacks and meals and treats. So we all wait, we all eat the same things, we all eat gluten-free (as a precaution against Celiac disease which often shows up for those who have T1D). Everyone in our home understands how carbs and insulin affect a person's blood sugars and it isn't unusual for my 3 year old, helping make a birthday cake, to declare with delight, "Whoah ~ that's going to have HUGE carbs, Mama! Yummy!"
Our life is entirely about eating well ~ nutritionally, physically, and emotionally. Having (and loving!) a child with a chronic medical condition such as type 1 diabetes has forced me to put food at the top of our priorities. I follow a simple weekly menu that gives us a little bit of reassurance as to how Sunshine's blood sugars might respond, and we try to give her the example that anything is doable when you have T1D. It is easy to stay home from the parties or gatherings where I know soda pops will be served or second slices of cake will be requested. But, then...is that really living? So we go, carrying our bag of essentials like hockey players arriving to the locker room before a big game. We bring along a measured meal (just in case) and a homemade piece of cake already calculated and counted (though lately, she wants the real deal like everyone else). But mostly, we go with a lot of faith and a lot of letting go, knowing her numbers will skyrocket late into the night...but, I'll do what I can to feed her as best I can and let her think, even for a little while, that she's having the freedom that the other kids unknowingly have. For just this one night.
* * * * * * * * *
I don't have any recipes to share in relation to type 1 diabetes because we eat the same foods anyone else does...we just count the carbohydrates in them so we can give Sunshine the right amount of insulin. We have very few people who understand how to do this for her, so I thought I'd share with anyone willing to learn how simple it really is to count the carbs in what you are eating.
First, most animal products don't have any carbs worth counting...eggs, meat, milk, and even most cheeses are pretty negligible for carbs. I do count for yogurt, but mostly if it is flavoured, which has sugar added.
Second, in North America, it is compulsory to include the nutritional information on food packages. All you have to do is read the portion given for the measurement, found at the top. You need to know how many portions (or the total amount) of food in the entire package. Then you need to look for the carbohydrates listed (in bold type) and subtract the fibre sublisted under carbohydrates. That gives you how much in each portion size. A little cross multiplication will give you the amount of carbs in the portion size you take. And that is it...
In these rice tortillas, 1 tortilla has 24g of carbs - 2g of fibre = 22g of carbs in one tortilla. Sunshine typically will eat 3/4 of a tortilla when we eat quesadillas so that means she will eat almost 17g of carbs (excluding what is inside the tortilla).
It gets a little more complicated when you bake a cake or make lasagna, but essentially it is all about good skills at cross-multiplication ~ which you pick up very quickly, I assure you!
Joining in a monthly series...Please have a visit to the kitchens of these other mamas :
January ~ getting started
February ~ winter warmth
March ~ body ecology