Thursday, October 20, 2016

Strength in Sitting

At times, it can be so exhausting to stand for something.

It's not always a decision to stand.  Sometimes we are pushed or pulled or, sometimes, the thing you end up caring about is a big giant hole you just fall into by accident.  Other times, you see or hear something that makes you care or hurt or cry, and you feel so strongly with all of your cells, in that moment, that you want or need to be involved with whatever it was you saw or heard.

It's always pretty inspiring to me to see someone who cares deeply for a group or a cause by which they are not directly affected.  They raise money, raise awareness, raise their hands and it's not going to come back to benefit them.  They aren't going to be cured, or housed, or clothed, and they are still excited and willing to be where they are and to play their part in that moment.

However, these people can say, at any time, "I need a break."  They take a break, get refreshed, and hopefully they decide to jump back into all those raising efforts with renewed hope and heart.  I have a lot of lovely people around me that do just that.  They spend countless, unseen hours for people, animals, shelters, countries, chronic conditions, and so many other deserving causes.  I want to jump in with them!  I want to help and give and share and just do it all along side them, and a lot of times I do and it's great!  I stood for something for a bit, I feel good about it, the organization I worked with (hopefully) felt good about my being there, and then I go home and I sit and I move on.

It's the standing for something you can't let go of that is wearing.  In my case, I fell into the thing I care about, and sometimes I just want to quit caring about it!

When Bug was diagnosed with type 1 she was a baby.  It was easy to care and to fight for her because she was helpless!  I fed her baby food with a spoon, wiped her face, gave her insulin, changed her diaper, bathed her, rocked her.... you get it.  I cared so much about her being cured.  I prayed every day, at least three times that this was some weird case she would grow out of and suddenly have a working pancreas.  I talked about it all the time.  I volunteered with JDRF as much as I could, I started this blog, I raised money, and frankly wore people out, I'm sure.

The parents I met with older kids warned me that when Bug was a teenager she would go through a phase where she would try to act like she didn't have type 1.  She wouldn't check her blood sugar, she wouldn't want to talk about it, she would want to hide her condition from the other kids her age and just try to be "normal" for a while.  I was so stressed about this impending doom.  After all the hard work and sleepless nights my husband and I had put it, how dare she ruin that perfect A1C we had built up over time?!

But now it's me.  No one ever told me that I would be the one to rebel!  No one warned me that I might want to run away from caring about something.

Bug is 8 now and has been doing insulin injections, instead of wearing a pump, for about 4 months now.  It has gone so well!  She is so self sufficient and confident in giving herself shots.  She checks her own blood sugar, adds up her own carbs (with adult assistance), and after we calculate the dosage for her, she gives herself her shot.  She is very good at feeling her lows and highs and is quick to check her blood sugar as she feels needed.  We are as close to normal as we've ever been.

I watch her run like crazy on the soccer field and swim for hours in the swimming pool and I can almost forget.  Then all of a sudden I look up at her during soccer practice and see the color drop from her face and call her off the field to check her sugar, sending her back into the action with juice box in hand and I hate it.  I don't think she minds, but I do.  I'm getting these tiny tastes of life without, and it's what doctors might call "habit forming", and I am aching for more.

I have a feeling a lot of people living in close quarters with a chronic condition would say the same thing.  I just don't want it to be a thing anymore!  I want to care about something else and take a break from this one for a bit, but the whole "keep the human alive" thing is rather pressing, isn't it?

I want her to feel like a "regular kid", or at least that's what I'm telling myself.  The truth of the matter is, she doesn't feel like a regular kid.  She knows she's different and it's not all bad.  It's part of her and it's totally fine and good.  It has set her apart, and by being set apart she has been able to open new doors, experience new things, and meet new faces; giving and receiving hope that other "regular" kids aren't privy to.  Sure, she has her moments: rolling her eyes when I ask her to check her sugar, missing recess because of a low, only having one cookie at the class party while her friends get three and four.... there are definitely thorns among these roses, but she is handling them well... for now.

I guess the issue at hand is that I want to feel like a "regular" mom.  I want to rescue the lost brain space and sleep and hours in doctors offices and give them back to myself.  It's selfish I know, but it's fair and good to say, in the least.  I don't want to count carbs.  I don't want to check her blood sugar.  I don't want to do the math. I don't want to order the supplies, call the pharmacy, call the doctor, keep skittles and apple juice in my car, be afraid of illnesses.  I don't want to read about the research, or the newest devices, or know all the things I know.  I don't want to hear the horror stories about kids not waking up, or having seizures.  I don't want to have to hold that weight at all times, but it is chronic isn't it... constant and deeply rooted.

I volunteer with the Juvenile Diabetes Research Foundation and I love the people that work there.  They work, what seems like, tirelessly for a cause we fell into.  I will be forever grateful for the things they do in plain sight and behind the scenes in taking steps toward a cure for type 1.  7 years ago, I was in that office all the time.  I was at every event and meeting and party and walk... you name it.

I realized lately: I need to sit for a bit.

I still love JDRF.  I will still be at the meetings and the parties and the volunteer moments because they are my people, that is my beat and even if Bug wakes up tomorrow with a miraculously working pancreas I will still care and stand in search for a cure for type1.  But I can't do all of it, and the people that matter are fine and supportive of that decision.  Just this year I did not raise a posse or even show face at the big JDRF One Walk.  On that particular afternoon, my husband played golf with Bug and his brother (who also has type1), and I took a nap on the couch.  The world kept turning and JDRF raised a bunch of money without us.

It's impossible to feel the greatness of such a weight while trying to be a constant source of strength amidst the struggle.  The struggle is wearing enough in itself.  The mental wear and tear of a parent of a child with a chronic condition is constant, so to say that our tethered energies need strengthening at times is an understatement.

I don't mean to write all of this and tell you to abandon the nonprofit organization fighting on your behalf.  Stay the course.  Keep your causes.  Fight for your kids and your battles, but let your strength rebuild.  It's ok to WANT to not care.  However, I have found that even when I try to push it away, the caring sneaks back in and I can't turn it off.

I will stand for my something, and when I feel a weakening in my knees, I will sit.  I will sit and vent and cry and hate all of it for a very short while and then I will look up and see the people that stood in my stead while I sat.  I'll say thank you, knowing they will never fully understand the roots my sentiments hold, but I trust that they feel validated in knowing they served me well.

I want to rebel and not to care.  I want my cause to be different, but I'm learning it was a purposeful fall into a path and a direction I would not have chosen.  The Lord needs me on this path and my eyes focused in this direction, realizing new strengths and new weaknesses.... opening new doors, experiencing new things, and meeting new people; giving and receiving hope that other "regular" kids aren't privy to.  For that, I'll stand to no end.

Friday, March 11, 2016

Puddle Jumping: Feeling the Impact

Unfortunately I'm meeting more and more people that are directly affected by type 1 diabetes.

I'm not sorry that I know you or that I met you but I'm bummed about how we've met and the reasons we need each other.  However!  We do know each other and we do need each other and we are such a great team, all of us diabetes community types, so, good for us!

When we get together we like to talk about things that other people just don't understand.  Like we are chronic illness elitists or something.  Whether it's "what's your life support system?" or "how many carbs do you think this hamburger bun has?" we are guessing and learning together on a daily basis.  There are loads of ways we can educate the people that are not us; with numbers and facts and examples and daily interactions.  But the truth is there are things that we can't put words to.  I think any parent or caretaker of a kid with a chronic condition would say the same thing: when we look into the eyeballs of someone living the same life we don't have to say a word.  We want to cry and scream and hug and laugh and say bad words and pray all at the same time.  We know what not to say and when to speak up.

I recently have met a few newly diagnosed families and I listen to their story and hate the next chapter for them.  One thing I have thought and talked about ever since Bug was diagnosed almost 7 years ago, and something I have had a hard time explaining to people who don't speak chronic illness, is that after diagnosis you have to mourn that loss.  The loss of the way everything used to be, because every inch of every second has now changed and you just have to hang on and go with it.

I've written before about the day Bug was diagnosed and how awful and scary that was, but it was the six months after that day that brought me to my knees.

I was truly in mourning.  Everything that happened in that time period is in a foggy place in my brain and even now I can't remember it in full color or volume.  It was lonely and terrifying and just altogether uncharted territory and I did not want to own one bit of it as my actual life.

I cried a lot.  I cried because I was scared.  I cried because I felt entitled to a different kind of existence.  I cried because I was sad.  I cried because I couldn't make Bug's baby food myself anymore because it was easier to count the carbohydrates in a pre-measured jar of green peas.  I cried because everything from that point on had a big giant diabetes stain on it.

I mourned the loss of carefree and the loss of laid back.  Bug has worn an insulin pump since we came home from the hospital with diabetes, and I remember after her bath, before I put her pump back on, I used to hold her and rock her extra long sometimes.  I would rub her back from her diaper to her neck, over and over.  It was the greatest feeling, her tiny back not invaded by a medical device.  In those moments it was like it used to be.  Then I would cry again, watching tears hit her back and roll past the tiny bruise she had from her pump hitting her back in her carseat over and over.  I'm so grateful she was only 10 months old at the time, otherwise I would have seemed like a total loony toon with my crying and excessive back rubbing.  I mourned the loss of her bare back and the way a onesie used to look without her big bulky pump underneath.

Some of it seems dumb but I'm so glad I let myself feel it all.  I was unknowingly patient in my grief. My natural tendency is to want everything to be fixed and fine and comfortable as soon as possible, but in those six months, there was no hurry up and get better.  It was heavy and real and would be affecting the rest of my life and the lives of my family members, every hour of every day.  I was weak and afraid and feeling every bit afflicted.  In my mourning and my grief and affliction, in my weakness God's power became stronger and my purpose made more clear.

I like to think about this whole situation like a rain puddle.  We have had a lot of rain lately and my son goes into a deep depression if he can't be outside for at least 30 minutes every day.  So, naturally we have been playing in the rain lately.  A lot of puddle jumping and splashing, followed by so much laughter and joy, resulting in a positive nap time experience for the both of us.  In all of the rain and his puddle joy I've noticed a few things.  When a rain drop hits the puddle, the puddle gives way a bit to allow the drop to make an impact.  After the impact, come the ripples and then that rain drop is forever part of that puddle.  As the ripples fade away the puddle calms and is now a little bit bigger and more purposeful; better for the jumping of little feet.  We need to be the puddles.  We need to give way for the afflictions and feel their impacts, because then the ripples come and we can see how the Lord is made strong in our weaknesses and how he is making us new.  We need to mourn and let ourselves feel loss so that we can move on and grow up and do the big things we were created to do.

If you are feeling the weight of a season of mourning, you are right to feel it.  Know that after the ripples calm, there will be a bigger puddle and a higher purpose and there will be joy and jumping again.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

Wednesday, February 3, 2016

Feeding and Fueling

Ok, so food!!

Disclaimer: This post is long and only going to be minimally interesting if you are trying to feed a human child, only made actually interesting if you have a human child with type 1 diabetes that you are trying to feed.  Also I use the word squeezie a lot in this post, and am well aware (thanks to spell check) that this is not an actual word.

Lately I've been asked a lot of questions about food in relation to type 1 diabetes.

Can she eat this cupcake?
What does she eat for dinner?
Can she have soda?
Shouldn't she just have a no carb/high protein diet?
Does gluten free help?

These are all great questions!!  Feeding a kid with type 1 diabetes looks different for everyone.  For me it was unique because Bug was a baby, still eating baby food from a jar; this was pre-squeezy baby foods.  I remember counting carbs in a jar of green bean baby food, I think it was probably 9 carbs or something.  I also remember withholding milk from her at certain times, simply because it hurt my brain to think about counting the carbs in a sippy cup of milk that may or may not have actually made it all the way down the hatch.

And to answer those questions:
Yes she can eat the cupcake, I just need to see it and decide how much insulin to give for it.  

She eats all the same things your kid eats for dinner.  

She can't have soda, not because of diabetes but because she is my kid and I just haven't given it to her.  

She can not eat a no carb diet because her pancreas doesn't do it's job anymore so her body can not compensate for the lack of carbohydrates the way yours does when you switch to a no carb diet.  Your body sculpts muscles, her body would just quit all together.

Gluten free is still so new to me and I am learning more about it every day, so I don't know the answer to that question entirely. Stay tuned.

We love food at our house.  My husband is a fabulous cook and I know how to read, so between the two of us he can make incredible things from what's in the fridge and I can follow instructions for equally fabulous recipes.  All on her own, Bug has grown into a fabulous eater.  (this has nothing to do with us, our other two people do not eat so fabulously!)  She will try anything, so long as it's not "spicy" and she genuinely enjoys vegetables and healthy foods.  She loves to cook, and as her parents we have decided she will be a famous chef and make super yummy healthy food and take great care of her adult diabetic self.

She inherited my sweet tooth and deep need for chocolate after almost every meal so she and I are working through that one together.  All that to say,  my husband and I lucked out in a way, with our healthy eater and early diagnosis.  Had it been her sister we would be dealing with an aversion to almost all foods aside from cheese, vanilla ice cream, and a very specific brand of flour tortilla.  Not to mention, had Bug been diagnosed at a later age, we would have developed other habits by then.  We would have been dealing with a love of soda and skittles at every movie or snacks at random times or grazing throughout the day.

So today, hopefully I can provide some helpfulness in terms of eating and feeding and encouraging your type 1 diabetic at meal and snack times.

First of all the most important thing, and I have mentioned it countless other times, is the schedule!  Keeping your kids on a somewhat predictable and structured schedule in relation to meals and snacks will help you and them and their blood sugars; ultimately resulting in fewer dips and spikes in blood sugars.  Our summer structure obviously looks different than our school structure and both of those may look different from yours... find one that works for you and do your best to stick with it.

Some of you hate the word structure but if nothing else, do it for your future 99 year old type 1 diabetic who still has normal vision and all her toes... she will be so grateful you rose above your need for all things sporadic.

Next lets discuss general healthy habits.  I do not even have soda in my house, except for the one 12 pack of Diet Dr. Pepper that I keep for my neighbor (there's a story there).  Now, hear me when I say, I do not care if you give your kids soda or sprite or diet coke or whatever, truly zero judgement, I am only saying: "We don't drink soda and I'm fine with that."  All that to say, at meal times we offer water, milk or lemonade, the end.  I know that will change as they get older but as for now they think the "fizzy drinks" taste weird and I'll be the last to argue with them.  Not to mention, if your child has a high blood sugar he needs more water anyway, to wash out the ketones; so really water is good and wonderful on all fronts.

Moving on to specific meals.  I have a lot of friends asking what to feed their kids with type 1, and they feel stuck in the foods they feel safe feeding.  I'm just going to do some lists.  Oh how I love lists.

Now, we all know if you've made it to this point in the post, you are truly interested in how to feed your kid with diabetes so a list will be the most helpful for all of us.

Here are a few options for each meal and things we cycle through.  We are carb counters so I'm a huge fan of anything with a label or a website.  And I have special hugs and kisses saved for the people that post healthy recipes online and leave the nutrition information at the bottom.  All the diabetes moms said "Amen".

I'm not posting recipes, just names of food items and a few helpful hints.  And remember PORTION CONTROL is your friend and will help you if you are counting carbs so take the extra step and measure the cereal in the measuring cup, it will not make you late for school.

***EDIT! And also my new favorite thing for any meal or snack or sweet fix: Justin's Chocolate Hazelnut Butter.  I can not say enough how much I love this stuff!!! On toast, waffles or just a spoon: so.yummy.****


*I tend to pick things that are quick, easy, and have fiber and protein in them to get Bug to her morning snack time without getting hungry... this does not always end up successful but I'm still aiming for it*

-2 Whole wheat toaster waffles (We like anything in the Van's Frozen breakfast item family!) with peanut butter or a tablespoon of agave syrup that I put in a little bowl for her to dip.
-2 Microwaveable pancakes with same topping options (again: Van's.  In your natural foods freezer section)
-1 cup of cereal and milk.  Our favorite options as of now are all things Cheerios and she has recently discovered a love for Basic 4....?  I am also scratching my head but I'm thinking the yogurt clusters drew her in.  Plus, it has a lower carb count and a higher fiber and protein count which means it last longer
-Fruit is never a bad idea in the morning EXCEPT for bananas!!  For some reason bananas are hard to cover and they always come back to bite us with a random high later on, so we reserve bananas for snacks.
-Immaculate canned biscuits (weekend food!  there is no time for anything going into an oven on a school day)
-Immaculate canned cinnamon rolls (more weekend foods)
-And then all the high protein favorites: Eggs, bacon, and sausage


-Sandwiches of all sorts, get creative because you are mostly only counting the carbs in the bread.  Be careful with any kind of cookie cutter sandwich situation; I have a hard time subtracting the carbs for the bits I've cut off with the cutter.  I used to make her eat the extras that were cut off so it would be easier for my brain to count.
---Sandwiches options(a list within a list!):
     -Peanut butter and jelly.... I buy the Polaner's high fiber, sugar free jelly.  To date, the best sugar        free jelly I have found.
     -Rasin bread with cream cheese, you can add ham or turkey to these to keep 'em guessing
     -All things meat and cheese, so many options here
     -Bread options: Honestly I think any bread that your kid likes is fine.  We sometimes use the Orowheat Sandwich Thins because a whole sandwich with those has the same amount of carbs as one slice of regular bread, but when we wear out on those we switch back to just regular sliced bread.

-Yogurt: I LOVE all things squeezie.  Right now the ProBugs squeeze yogurt is our favorite.  It's tons of yogurt, she likes the flavors and it's only 10 carbs!!  I also like the tubes and the smoothies, although, no thank you to anything with a well known cartoon character on it.  This usually means there is loads of sugar in it resulting in too many bad carbohydrates.
-cherry tomatoes (Bug loves these, I realize this is possibly an acquired taste)
-olives: they come in little individual lunch box cups...? (again, Bug loves these and they have virtually no carbs so I'm not complaining)
-carrot sticks
-apple slices
-apple sauce: again the SQUEEZIES! love them
-Babybel cheese: how fun to unwrap that every time?!
-Chips!: most kids love chips! We love the Veggie Stix and also to the Simply Cheetos.  They are super yummy and fulfill the need for salty crunch and they are only 1/2 a carb per chip!.... so math wiz moment: that is 5 carbs for 10 chips.
-Lunchables!!  YES I do send these once in a blue moon and you can take your judgement elsewhere; the carbs are listed on the back--easey.peasey.
-Lunch dessert!!  I usually put two Hershey Kisses in her lunch which is roughly 7 carbohydrates.
*funny side note: she recently told me she lets the kids at lunch count her carbs and add them up to see who get's closest to the total.  The winner gets one of her Kisses.

**another side note: I put an itemized list in her lunch box with the food item and it's amount of carbs should she eat all of it and a total at the bottom.  That way if she doesn't eat ALL her carrots the school nurses can account for that.


*Dinner is getting tricky as she gets older because she is wanting to eat more of what my husband and I are eating which is both great and also tough for counting carbs when the portion sizes are not quite laid out as well as they would be in say: a squeezie.

-Mac n Cheese: We love Amy's frozen Mac.  1/2 of that box is 20 carbs.
-Hot dogs... I like the "whatever the most natural Turkey dog" option there is.  *People on soap boxes about hot dogs, need not apply here*
-Meatloaf! This is Bug's favorite dish and my husband's least favorite so we make it when he's working late or out of town.  It's relatively low carb and goes great with green veggies.
-All things beef: roast, burger, stew over egg noodles
-Pork tenderloin
-Soups: from cans or there are a bunch of great soup recipes that are easy, yummy, and healthy
-Pizza: make your own, frozen or take out... love love love pizza and depending on the crust depth, carbohydrates are "google-able"
-Tacos: all kinds; fish, beef, breakfast, or chicken
***One of our favorite things!!!: and can be eaten with tacos or quesadillas are the Mission Carb Balance Whole Wheat Tortillas.  They are yummy and have a FAR better carb count than regular tortillas.  Go and get this ASAP.
-Spaghetti and meatballs: There are a bunch of frozen meatballs, and some in the deli meat section of your grocery.  There are also a lot of really yummy and easy recipes out there for meatballs depending on your level of commitment to touching raw meat.

I could go on and on and on about dinner options so I won't go completely there but I will say, try to get a good protein in every meal to keep a stable blood sugar and mood, and even if they aren't going to eat them, give that kid some veggies!  My middle child will not eat any veggies accept for green peas (frozen not canned) and the tops of "broccoli trees", so we have those two things many times throughout the week.

*I have a special place in my heart for the snack because its the mini meal that gets me to the real thing that last longer and has more components, and that really makes me happy*

**also, for snacks we try to hover around 15-20 carbs, just enough to keep her blood sugar from dropping and not too much to have to cover with insulin, thanks to the constant basal rate she is getting from her pump (although, I think we are close to the point of needing to cover the snacks so if you are in that boat we will be joining your shortly I'm sure)**

-Popcorn: We buy the Skinny Pop Popcorn, it's 12 carbs per serving which is 3/4 cup
-Tate's Bake Shop Whole Wheat Dark Chocolate Cookies: you will eat all of these before your child discovers them, but they have great nutritional value and are so so yummy and crispy.  Just trust me on this one
-All things already portioned; the kind where you buy the box and theres a serving size already sealed up and in the bag and carbs listed on the bag....
     -bags of goldfish
     -mini nilla wafers
     -mini peanut butter crackers (grocery store brand: Kroger)
     -mini oatmeal cookies (grocery store brand: Kroger)
-Six packs of peanut butter crackers (these have more carbs than I prefer but usually I give her 4 and then a string cheese or something)
-Kids Z Bars, made by Cliff Kids:  There is a regular and a protein bar version.  Bug says both are good, so I prefer the protein version.  Great for snack before sports practices or games.  Higher carb content than I prefer for a regular snack so I typically will give insulin for half the amount of total carbs in the bar.
-Squeezie apple sauce
-Cliff Kids Fruit Rope
-Annies organic fruit snacks
-Chocolate covered almonds

Snacks to have when they are hungry AND have a high blood sugar:
-Any deli meats
-Protein pack: Oscar Mayer makes these protein packs with cheese cubes, meat cubes and nuts.  Bug loves these!  She takes these to school for snack with a fruit rope or fruit snack
-Any raw veggie with any (small amount of) salad dressing
-Hard boiled egg

Now on to the sweets!!  I love love love sweets and chocolate and everything that they involve so I was determined to not deprive Bug of any of it!!

-Cupcakes: usually I save cupcakes for VERY special occasions like birthday parties or christmas or mommy had a rough day type situations... on average a cupcake with icing is about 35 carbs

-Brownies: Brownies don't come up very often but when they do I totally guess, let's be honest.  I would treat them like a cookie, depending on size.  Basically depending on who made them, and what was used in the process, brownies can run either 5 carbs per or 35 carbs per.  You probably now understand why I try to avoid brownies

-Ice cream: I try to get the pre-portioned ice cream in the party cups.  Keeps us from over serving and gives a good guideline for how much she should have.  We usually put sugar free chocolate sauce on top of a vanilla party cup.

-Donuts. so much.  Donuts are so so tricky though.  The glazed donuts (on paper) have about 20 carbs, BUT most of those carbs are from super refined sugars which means those carbs are almost empty.  They go in and out of the body before the insulin you gave to cover them has a chance to work.  So, by the time the insulin is at it's peak in effectiveness, the sugar from the donut is out of the system, resulting in a crash in blood sugar.  Take home point: if you're going to eat a glazed donut, cover half of it and then check blood sugar an hour later.  If you eat a cake donut or more complex donut situation filled with creme or something, I suggest consulting a website like Krispy Kreme to find a similar donut, and look up the nutritional information they have there.  Donuts are total trial and error for me... if you haven't guessed already we do not eat donuts but maybe three times a year.

-Any frozen yogurt or popsicle spot.  These are my after school snack spots of choice.  They usually have fresh ingredients and good options for portion control.

The Big No-nos... but we still definitely still try to eat them because, childhood!:
-Cotton Candy
-Snow Cones
-Any movie candies (although I do try to portion these out because they are all so yummy... and things like M&Ms and Skittles are awesome for low blood sugars)
-Anything in the Pixie Stix, Pez, or other novelty solid sugar headache inducing family.

-Lemonade: We use Crystal Light; usually we use the squeeze bottle that lets you put a few drops into a glass of water, but the powder that makes a whole pitcher is great too, we just usually don't have room in the fridge
-Capri Sun: I love the Roarin Waters because they have half the carbs as the regular


Are you still there! Ha!

What do your kids love to eat that is (mostly) healthy and keeps them going through the day?  I always love input and helpfulness from other mamas so feel free to share your hints and tricks, I know there is still so much to learn!!