Tuesday, June 27, 2017

If you build it.... it will still want to go to camp.

Imagine you've been building a Lego structure for 8 years.

There are so many different instructions and rules required to build the structure.

There are random pieces that are all over your house, and you keep bare-footing that one white piece that is flat on the top and can only be used for that one edge on the far right corner.

The manuals are in a huge pile; crumpled and out of order.

Some days your structure looks like its working out perfectly and you are following all the right steps, until you find the right manual, and turn to the right page.  You turn the page in the 37th manual to step 57 to see that you are "now going to remove all the pieces you assembled from steps 23-56".

Not a lot about this project makes sense and you absolutely hate every thing it represents, however your life and sanity depend on your efforts and successes.  These lego pieces have the ability to give and take away actual breath.

Oh, also you are working on this undertaking all day, every day and it even keeps you awake at night because you worry you did step 114 wrong.  At this point you hate the work, but you're strangely proud of your efforts and what you've built to this point.

You might argue: Not wrecking the structure, or melting under the pressure could be your greatest achievement to date.


Now, imagine packing up your project.  This thing you've been building all day every day for 8 years.  The thing over which you have cried, sweat, bled, rejoiced, studied and prayed over, this beautiful monster that makes you crazy and sane all in the same breath; you pack it up with all of the instructions and extra pieces and hand it all over to a wonderfully willing someone whom you have never met.

Some one else is going to be working on this project in your stead for two weeks.  Every day. Every night.  Two whole weeks.  You can't watch what this someone does or micro manage how well they fasten the pieces together.  You can't go behind to correct the missteps to be sure the whole structure doesn't implode.  The fact that you are thinking about it all the time takes up valuable parts of your brain space.  The loosening of your grip is proving to take physical breath away.

It's not the control you will miss but the freedom in the knowing.  You're going to miss knowing all is well simply because you can look across the room and see for yourself.

I'm sending my Legos to camp in a few days.  Bug wants to go to camp; and not diabetes camp, camp for "regular kids". (her words, not mine)

I have prayed and worked and stressed and prayed over this decision for two years.  Bug has known what is required of her to reach this goal and she has surpassed it exponentially.

Last summer she switched to shots so it would be easier to be in and out of the water at camp.  In April she started wearing a Continuous Glucose Monitor (CGM) so we could watch her blood sugars and see her trends.  She changes her CGM transmitter site every week by herself and when it alarms in the middle of the night with a high she gives a shot with a correction (yes, she knows how much to give and has not messed up yet even at 3 am when she's exhausted!).  If she gets an alarm for a low, she comes to let me know and I help her handle it; even though I feel certain she could even handle that on her own as needed.

She is exceptional, but she is still (almost) 9.

This human is beyond determined to achieve a goal.  When she knows what is required of her to reach the goal, not much will stand in her way.  She is smart and strong and she's going to be FINE.

But now, for the first time in 8 years, the castle I've built is left to it's own devices.

I've left her with countless babysitters and with grandparents, she has even spent the night with a friend (one. one friend) but I always had the freedom to pick up my phone and check in.  I had the freedom to know what was happening and the ability to help with any issue over the phone.  When she is at camp, that freedom is quickly restrained.

I have talked with the nurse on the phone.  She could not be more fabulous and is more than capable to handle it all.  She was kind and patient and gave courtesy laughs when I rambled and made nervous jokes on the phone.  She was in charge and organized and smart and even sounded smiley and pretty. She was guarded and wise and didn't act like diabetes was not a big deal.  My concerns and worries were validated and met with answers that I accepted.  I even said, "I don't want to be in the way of the nurses being able to do their job.  I trust that you have a system and that you have it all under control."  Then I rolled my eyes at myself for trying to "play it cool" with her.

Even now, typing that out I feel calmer remembering that I said that to her.  I do trust them! I do trust that they will do a good job and that they have a good system that works and that this is not the first diabetic they've ever met in the history of their medical careers.  She even told me that a woman that works there has CHILDREN OF HER OWN THAT HAVE TYPE 1 AND SHE WILL BE ABLE TO HELP WITH ANYTHING THEY NEED.  I laughed really hard when she told me that; hopefully in the least crazed way possible.

I had prayed for a counselor with type 1, or a that has a sister with type1 or a best friend, or mom, or even a dog; I'm still praying that prayer now: familiarity.  I hope and trust and rely in the control that the Lord has over Bug's life; her highs and lows and inhales and exhales.  He has gone before us to put people in charge of Bug's two short weeks that will be the absolute best for her and I really truly do believe that.


Excuse me, it's HARD!

I almost forgot to pack actual clothing for this kid because I was so fixated on "do I have enough glucose tabs" and "how do I make a fanny pack seem like a good idea to an 8 year old... because she has to carry all her STUFF with her at all times?!"  I have bought every glucose tab Target has had to sell the past three times I've been.  (going back tomorrow to buy more)  I called the CGM people to see how quickly they could send a replacement in case something happened to the existing one, and "is there any way we could jump through the insurance hoops ahead of time so the overnight option isn't in fact three days long?" There are countless lists and very little sleep hours logged.  I am neglecting normal duties like cooking and showering and have gone "full metal jacket" stress about what I'm going to forget.

My husband said to me yesterday, "I know you want to do it right as a first time camp mom." I do!  I want to do it right.  I want her to feel safe and confident in her care and also I would like her to live through it all.  Above all of that, I want her to feel as "regular" as she possibly can.  I want all her extras to fit seamlessly into her day.  I don't want her to be held back or slowed down or miss one second.  Her doctor is as guarded as I am, but said to me, "our goal is for her to feel, do, and act just like every other kid, and that is why we are doing this."

This is my current mantra.

I keep telling myself, that's why I want the medical stuff to be tucked in and tidied up.  I want every possible bump to have a fix so she doesn't miss a beat.  She's going to be fine.  She was made for things like camp and large groups of  energetic people and constant activity and she will not be ready to come home at the end of the two weeks.

My husband is not worried.  Bug is not worried.  The nurses at camp aren't worried.  I on the other hand, I will be the mom that prayed for and carried the baby that became the kid.  I will be the mom that gave up control over her health 8 years ago while holding a crying baby who would be declared diabetic only hours later.

Trusting is terrifying and also freeing.  I can't plan to avoid the worst or control to a point of assured safety, but I can hope and look forward to the peace that comes in the wake of laying down whatever rights I think I might have as a parent.  Bug is on Earth for God's glory and He will be sure to make that known, despite any efforts I make to do the steering.

Diabetes is only a tiny bit of who this kid is going to be and that is why I'm sending her to camp.  She has lived such a specific life for the past 8 years, and now the exciting, amazing, life giving details are starting to filter in.  I want these two weeks to go well; to be some of her best days yet.

I want her health issues to fade and her person to show.

I will leave my hard work alone, as best I can, for two whole weeks and I feel certain every moving part involved in the building process will be better for it.

You can be sure, that when we get her back: there will be rest again....

and possibly a champagne toast.

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.  I.love.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!!

Wednesday, September 30, 2015

Back to Basics.

One year and one month and a few days and hours later.....

I took a break from the blog to be human and procrastinate and also to work on a lil something (details later) but NOW!  Now we are back and up and running.  From now on, this blog will be more diabetes focused; I'm learning there is a bigger need in our type 1 community.

Whether I like it or not there are more and more of us every day.  I've met, texted, emailed, and talked with a lot of newly diagnosed families lately.  I hate that we are connected by the diabetes monster but we are, so: nice to meet you and I'm glad we're friends!

Your friends and family members have sent me your information, phone numbers, email addresses, etc and I haven't gotten a chance to get into contact with a lot of you so I'm starting to write here again in hopes that we can connect better.

Something I like to tell most parents of kids newly diagnosed with type 1 is that other people really just don't get it.  Even your closest of close of your friends, and a lot of times even your family members, will never be able to fully be on your level.  Not because of any fault of theirs, but because they don't eat, sleep, breathe, and bleed with you and your kids every day.  That is 100% normal and fine and you need to know that so you don't go getting your feelings hurt when your best friend forgets that your kid can't eat a graham cracker at 1:30 in the afternoon because it will throw off your day.  So, just decide now that you are going to be an adult and give grace and all that good stuff.

For me, I would say our school nurse, my parents and my in-laws and my fellow type one parents are the closest to myself and my husband in the department of "getting it".  My husband has a younger brother who was diagnosed at 17 so he's mostly on our same wavelength, but he hasn't experienced diabetes as a child or as a parent (hopefully he never will!) so even he can't TOTALLY relate.

I always forget what a lonely place chronic conditions can be until I talk to an outsider and they ask questions and are shocked by the answers:

-Do you have to check her blood sugar EVERY day?
-So she just eats gluten free or something right?
-When will she grow out of it?
-How many times a month do you give her insulin?
-And so on and so on and fill in the blank with whatever seemingly ridiculous things people have said to you...

It's almost like I think that since I am immersed and drowning in diabetes education, that everyone else will be as well.  We can't fault anyone for asking questions.  If anything, I think the fact that people ask questions at all should tell us that they care and are somewhat interested in what's going on in our lives.  Also, lets be clear: I tell them!  I tell them more than they probably want to know, but the question deserves a thorough answer and its almost therapeutic to spill your guts about what all goes on in your house between the hours of 6:30 and 7:30 am.  

I used to be the asker.  I used to be clueless about diabetes!  I've written about it before; when I first met my brother-in-law I gave him a hard time for wearing a pager at the pool... pager turned out to be his insulin pump and I felt like a big dummy.  He of course was gracious about it and laughed and didn't call me an idiot; at least not to my face. All that to say, no one else will ever understand your day to day, until they have lived it.

I get so many questions from newly diagnosed families about our daily schedule, how we operate, how we travel, what a school day looks like, and what we eat; so for today it's all about the schedule.

I am a schedule person.  I like to have times and places for all things and I prefer to be early for most occasions.  My schedule love evolved from my struggles in school.  Once I learned that I function best when I can predict and plan on when things are going to happen, I was able to actually study and do well in school.  Unfortunately, I didn't figure that out until I was a senior in college, but if nothing else, it prepared me to be a somewhat fully functioning adult when I graduated.

When diabetes came to live at our house, my love for order really helped us out.  All eating "moments" happened at the same time every day; as did play and sleep.  There is no grazing or random snacking going on.  Because we were on such a strict schedule going into type 1, I was able to predict Bug's highs and lows.  Knowing what to feed her and at what times quickly became second nature.  She was 9 months old at diagnosis and to this day (she is now 7) we still follow the same schedule for the most part.  Aside from naps and what she is eating, not much has changed.

So for those of you struggling with how to plan the day; here is how our day looks:

Our blood sugar goals are for her to be between 80--175.  Below 80 is low, and above 175 usually gets a correction.  Both can be evaluated on their own depending on circumstances. (if she is 80 and about to eat a big meal: no rescue (juice), and if she's 175 and about to go play outside and had cheese and a handful of nuts for snack then I don't correct.... this is where the "guessing game" comes into play; more on that on a later date)

*these are school days, weekends are not terribly different except that breakfast happens later

6:45am-- Check blood sugar. Breakfast. Around 25-30 carbs, try to get protein in there to keep her full all the way to morning snack

**** she usually needs to check some time around 9/9:30 because she is starting to get hungry and is afraid she is low.  Most times she is fine and just feeling hungry... this has been a big struggle for us since she started school but has gotten better every year****

10:00am-- Check blood sugar. Snack.  Around 15-20 carbs.  Give insulin only if she is running high and needs a "correction".  Give juice or "rescue carb" if she is low.
12:00pm-- Check blood sugar.  Lunch. Around 45-50 carbs. Give insulin to cover what she had for lunch and add a "correction" if her sugar was high going into lunch.
3:30pm-- Check blood sugar.  Snack.  Same protocol as morning snack. (I go a tad heavier on afternoon snack if we are going to soccer practice or dance that day and she had a low or normal blood sugar)
6:00pm-- Check blood sugar.  Dinner.  Same protocol as lunch.  SOMETIMES there is dessert... Actually, let's be honest, this is my child.... MOST TIMES there is dessert: we try to hover around 15-20 carbs for dessert.
10:00pm-- Check blood sugar.  Correct if high. Rescue if low.
2:00am-- Check blood sugar.  Correct if high.  Rescue if low.

***some times we check her later if we have stayed up later, so if she has a good sugar at 11:30 or so, I skip the 2am.  Inevitably I wake up the mornings after skipping the 2am check in a panic that she won't wake up... so it's usually a bitter sweet decision***

Bug wears a pump and we change the pump site every three or four days which is another drama in itself.. separate post entirely.  We do not have a continuous glucose monitor (CGM) yet because I hate change and can't bear the thought of adding something new and having two different sites on her tiny body.  I know they are wonderful and game changing so I'm working through it.

That's pretty much it.  Your schedule probably looks a bit different which of course is great.  I think my biggest motto (aside from "your look is 99.9% confidence") is that you need to find what works for you and your family and run with it.

Don't expect anyone else to completely understand what's going on behind closed doors and definitely don't apologize for being preoccupied with your child's health care.  There is a whole part of our brain that we used to use for things like our friends' birthdays and random acts of kindness... that part of our brain is now full of carb counting and constant worry.  We can always send the gifts late and there is plenty of time when our kids are grown for us to be randomly kind to people; dont' sweat it.

Thursday, August 21, 2014

Keeping Our Cool.... Sort Of.

It has been 5 months since my last post.  I will try to not go into too much detail about what's been going on since then... not because it's not hilariously entertaining, but because it would take forever and a half to type it out and I have three humans to raise!

Just know that since that last blog post, I went for a walk with a friend at 33 weeks and after that, the baby dropped so low I swear he was about to reach out and tie my shoes for me. (which would have been equal parts terrifying and helpful at that point)  I had contractions every time someone asked me when my house was going to be finished, and would we be in before the baby came.  Not to mention, getting out of a chair, brushing my teeth, opening the fridge... I quit keeping track of them somewhere around 35 weeks.

Then, after 3 years of our somewhat urban nomadic lifestyle, we moved into our finished house over the course of a week, finally sleeping there on a Friday night.  I was 37 weeks pregnant and was in early labor the entire week we were moving.  That Sunday morning at 7:21am, the Boy was born.

He was perfect and huge and quickly became the newest subject of the sisterly game we like to call "But it's MYYYY TUUURRRRN!!!"  Holding him, bringing me a burp cloth, getting his passy, unwrapping his swaddle; you name it they fought over it.  All out of love though, I'm sure.

Summer has been a wonderful blur.  It started with a family road trip when the girls were flower girls in a family wedding; Boy was 3 weeks old.  After that, everything went into high gear.  Settling in, unpacking boxes, hanging pictures, going to the pool and the movie theater, a road trip to Texas, working out, and then preparing for another school year.  All thanks in large part to the help of our saint of a baby sitter that came to play and feed and spoil the girls.  No doubt I would still be 40 lbs overweight, sleep deprived, and just plain mean without that girl.  (you read that correctly, I did it big this time.... "Forty Pounds" Big..... future post "Out of the Fog and into my workout clothes")

Last week Bug started First grade with two loose teeth and four already gone.  Peanut is approaching the age of 4; hilarious and in a constant state of "let's pretend".  And Boy has moved into his, newly finished, nursery.  He is sleeping through the night and no longer needing a swaddle.  He argues with me the least, so naturally at this point I like him more than the other two.  I will eat those words in about 5 months when he starts to make me crazy with a "is he going to die if he climbs on that?" thought pattern.

My husband and I managed to pack in (almost) every marital stressor into a 15 month period: Living with In-laws, pregnancy, moving, financial discussions, starting a new job, having a new baby, and traveling with children.  All along the way our sense of humor and our prayer life keeping us sane.

There are so many great stories between all those lines.... from the stress and pain of moving when you are 37 weeks pregnant, to the 10 minute time span of my life when I both met the OB on call, and then interrupted his introduction to tell him I was pushing and he better be ready.  The ups and downs of married life through it all.  And now back to school.  Back to routine.  Back to life.

I have such a hard time with change, it was only a blessing to have too many changes at one time to process each on it's own.  I blinked a few times, swiped the credit card a few too many, and cried quite a bit and finally I'm waking up to see my life and my purpose and my floor that needs sweeping.

After all of that: My husband and I are still married.  We still genuinely like each other.  Our children have not (managed to) run away or kill each other (yet). Everyone is fed and goes to bed "on time", and they seem to still genuinely like us as well.

We have made it to the end of an era and we are all better for it.  There have been hard times and hiccups, and many opportunities to ask for forgiveness.  As we practice thankfulness,  the path is cleared for us to see the blissful moments through our earthly first world problems, and we were able to count them as blessings in stead of stressors.

As the next phase of our life presses on past it's beginning, I have looked to 2 Peter as my August 2014 pep talk:

The whole book is great, but just for starters:

(3-8) "His divine power has given us everything we need for life and godliness through our knowledge of him who called us by his own glory and goodness.  Through these he has given us his very great and precious promises, so that through them you may participate in the divine nature and escape the corruption in the world caused by evil desires.  For this very reason, make every effort to add to your faith goodness; and to goodness, knowledge; and to knowledge, self-control; and to self-control, perseverance; and to perseverance, godliness; and to godliness, brotherly kindness; and to brotherly kindness, love.  For if you possess these qualities in increasing measure, they will keep you from being ineffective and unproductive in your knowledge of our Lord Jesus Christ."

Thursday, March 6, 2014

Bringing Home Chocolate Milk and a Diagnosis...Again.

We have been in the trenches as of late.

My brain is already fogged with pregnancy, home building, and being uncharacteristically unorganized in ALMOST every area of my life.

On top of all of that, there are the dealings and stresses that come with having two small children who require food, clothes, baths, attention, and frequent rides to various activities and appointments.  Not to mention, breaking up fights, picking out movies, changing dress up clothes, playing "Hungry Hippo" referee, and trying to make sense of the random tear-filled, complete and utter meltdown; happening in public, in private, or (my personal favorite) in front family members whom we currently "room with".

To say that I expect a high blood pressure reading at each pre-natal check up is an extreme understatement.  (my BP is fine, by the way.... as of yesterday)

If you know me, at all, you know I am a bit of a germ-a-phobe.  Which at this point in time, I would like to say is a misnomer.... I like to think of myself as having more of an appreciation for germs than a fear.  I get them.  I know how mean, strong, lasting, and scary they can be.  I appreciate how awful they can be.  My germ awareness came about after a few years teaching small children, followed by my baby being diagnosed with a condition that compromises her immune system.

After her diagnosis at 9 months and our 6 night hospital stay, we left with a lot of information, books, gear, toys and clothing from the gift shop, and with one bit of information that stood out to me like it was surrounded by a flaming hoop, in neon letters, with fireworks and glitter and a soundtrack:

"You should be fine unless she gets strep throat or the stomach virus... those two could send you to the ER pretty quickly."

Enter: my hand washing, Clorox wiping, and Lysol spraying regimen.

Five years later, we have survived multiple bouts with the stomach virus, among many other illnesses so, please don't allow yourself to think my efforts have kept us illness free thus far.  Although, I think it has kept us from getting sick often; even with a weak immune system and a little sister that HAS TO touch everything... every.thing.

This Winter has been nasty for everyone, I know.  The snow, the ice, the germs, the doctor visits... gross gross and more gross!  (My husband always says I'm reptilian, and I've never felt more so than Winter 2014.)  As expected the dreaded stomach virus started it's tour around Bug's school about a month ago.  I was on *high alert*... level Red, or whatever the worst color is for a terror attack alert.  We had our armor in full effect.  We did probiotics, Lysol the backpacks, wash hands, wash clothes and coats VERY often.... ALL the crazy person things you are thinking of, I did them and found comfort and pride there in my wintertime crazy person place.


*Diabetes Education Moment:  When people with type one get a virus it makes their blood sugar go up.  They still need insulin to combat the high blood sugar, but with strep and GI issues they are usually unable to eat so it gets tricky when deciding to give insulin.... worrying that giving insulin to correct a high blood sugar will give her a low that you won't be able to fix because she can't keep down the juice or the sugar to bring her back to normal.  When the blood sugar is high, her body makes something called ketones:

(from webmd)
Ketones are substances that are made when the body breaks down fat for energy. Normally, your body gets the energy it needs from carbohydrate in your diet. But stored fat is broken down and ketones are made if your diet does not contain enough carbohydrate to supply the body with sugar (glucose) for energy or if your body can't use blood sugar (glucose) properly.

Ketones leave your body through urine, and to make urine you require hydration.  If you are dehydrated from a virus and your body doesn't make any urine, the ketones just camp out and make ACID in your body.  (does that sound as scary to anyone else as it does me?!)  If you can't get rid of the ketones and you can't rehydrate, your blood becomes very acidic and starts to break down the fatty acids, and your body begins to break down.... everything in your body hurts, your heart rate elevated, your breathing is labored, you start to vomit and you have now gone into a complication called Diabetic Ketoacidosis: DKA.  

DKA untreated results in death.  

This concludes our Diabetes Education Moment.* 

There will be a time in your life when all at once, a great fear is realized and materialized too quickly for you to blink and understand.  And when you do finally blink; it's a slow blink.  When your eyes are closed, it's gone; the fear, the sadness.  And then your eyes open to a your life in front of you.  And you see it differently; the awful and sad, scary, great realized fear.  For me, this is a reminder of the promise of Heaven and the end of all the heaviness and the grey that you want to ignore and forget with every fiber of your selfish being.  Breathing DEEPLY with something along the lines of "I didn't want this cup Lord..."  or maybe if you're me: "this is awful and I hate it and it's really just not fair".

On Sunday, Bug woke up with a stomach virus.  One I had been awaiting due to the amount of cases going around her Kindergarten class.  All the other moms were saying "It's not a big deal, she got sick one or two times and then it was over."  So I was ready.  And true to trend: she got sick two times and then was fine!  Her blood sugars were not crazy high, her mood was great, she seemed fine and by lunch time she wanted to go for a walk.  I left her in front of a movie and went downstairs to work on the laundry and attend to the other human I raise, whom I had sequestered to another TV watching situation, in hopes of keeping the virus in one location/human.

When I got back to the patient 30 minutes later, things had turned drastically.  Her face was grey, she looked listless and was asleep.  I checked her blood sugar and it had jumped up almost 100 points in an hour.  I gave her some insulin via her pump and watched and prayed and waited.

Over the next 12 hours she got sick every 15-30 minutes as her blood sugar climbed quickly; not responding to the insulin corrections we were giving every 2 hours.

I called the Endocrinologist on call to make sure we were doing everything right.  I was so confused!  How could this quick "not a big deal" virus have turned into THIS?!  He said we were doing everything right but if her blood sugar continued to not respond to insulin, we would need to go to the ER.

Doesn't that sound so drastic?!  Of course I brushed it off (slightly) and decided she needed a shower and we'd be fixed!  The Emergency Room seems so serious and final!  The ER is where you go when you aren't breathing, or you break a limb, or your bleeding so badly they have to cut your clothes off to get to the wound to hold your body together.... too much TV watching on my part???

3:30 AM rolled around and Bug woke to get sick and I checked her blood sugar, getting a 595 reading. (normal blood sugar is 180)  I woke my husband to look at her.  She looked so skinny and her skin all over her body as a weird grey color.  Her nail beds were blue and purple and there were circles under her eyes that were a dark grey/navy color.  Her blue eyes were more blue than I've ever seen them; (another side effect of a high or low blood sugar in her specific case.)  She was completely out of it and making no sense... babbling about random things and asking for warm milk.  Her breathing was labored and quick.

We packed a bag and carried her to the car, too weak to walk.

By 6:30 AM we were settled in our room in the ICU and I finally felt relief in a strange way.

I can't fix it.  But all these lovely smiling people in matching clothes seem to be extremely confident and have it all under control.  I sat at the edge of her bed, remembering how tiny she was when we were there the first time 5 years before.

She laid still, almost lifeless, with her eyes closed while they poked and prodded and asked her what day it was and what her name was.  She was completely emotionless but managed to open her eyes long enough to ask for chocolate milk multiple times and "is it almost time to go home?"

A full day of worry, number and level quoting, advice and questions, doctors and nurses, visits from friends and so very much hand washing.  I laid down to sleep that night on the foam-cushion-bed provided, feeling the same emotion I felt 5 years ago, in that same spot.... total and complete defeat and exhaustion.  I did everything right!  How did we get to this point?!  All at the same time, grateful to be safe and no longer in charge of keeping her alive.  I watched the nurses come in every hour to take labs and check blood sugars while she slept, amidst the beeps and honks and constant noises of the ICU.

If you have ever reached the point of total defeat, it's hard.  It's hard to admit you are not enough.  It really really stinks to know and feel inadequacy on an (almost) daily basis.  But as soon as you do; as soon as you throw your hands up and say "TAKE IT, LORD, BECAUSE I CAN'T",  as soon as you stop trying to do it all, or be enough, or make it work for you... as soon as you just flat out lose and submit to the mystery of the Will of God; that's when you win.  You WIN.  You close your eyes.  You let go.  You breathe again.  Your heart remembers to beat.  You find rest in your loss and in knowing Someone else, Someone greater controls your days and nights, and will take on your great fears for you.

I finally gave in at 4:30am and went to sleep.

With the morning she woke with pink cheeks, asking for food and her daddy.

The rest of the day was full of more tests and pokes and blood draws, naps and jello, scrambled eggs, and yes, chocolate milk.

By the afternoon we were packing up to leave the ICU, and the hospital all together.  Still weak but happy to leave, she asked to get her nails painted on the way home.  Her daddy, of course, obliged.  We arrived back at her grandparents' house with red sparkly nails, flowers, balloons, and big hugs.

We got home and I jumped back into laundry and cleaning up all the things we brought home from the hospital; for fear that if I stopped to think, it would all come tumbling down and I would melt.  I tried to take it all back again.  The control, the order, the need for a normal.

My husband could sense I was on the edge, gave me a huge hug and I finally cried.  I couldn't breathe or talk or stand and could only get out the words "that was awful".

That is the only way I can describe it.  Watching your child's body be taken over by a condition you thought you knew and could control.  It was almost like being diagnosed all over again.  To re-feel the fear and uncertainty.  To remember it all again.  Remembering how serious it is.  Remembering how much I hate it.  Remembering that she will be living with it forever.  Remembering I can't fix it or take it on my own.

It WAS awful.  But it's over now.  I hate that it happened and that she has a "chronic illness" but I'm thankful in the midst of it ALL.

Still weary of germs and a do-over, and conscious of my defeat and my limits; I am grateful for the reminder of Heaven, thankful for the opportunity to see a light in a dark place, and in awe of how the Lord shines through those bright blue eyes.

He cares.  He loves. He takes it all because I can't.

Not that for one second I deserve it; but challenge accepted.