Weary and Teary

It has been one of those days. Actually it has been a hard past couple of days. Nothing a little shower sobbing didn't cure, however. I'm just feeling exhausted from all the work that goes into diabetes! With no chance for improvement.

I love to clean things because of the before and after. I cleaned the grimy sink, stained with wear, yesterday. It brought a bit of joy and let me tell you why. I hate the yucky yellow on my white ceramic sink that accumulates over time from dishes and food. But ahh, how I love the glistening white sink once I've taken the Comet, scrubbing sponge and a little elbow grease to it. The before and after. Don't really get that with diabetes. All the work with no real end in sight. It isn't something that improves over time. Either you have it and life is crazy-hard, or you don't and you don't even have to think about what your pancreas does for you 24-7. I will never take a working pancreas for granted again!

 I'm hoping, HOPING, that with a lot of work, and hopefully in a few months, diabetes will be just like starting a new exercise routine. Killer on my body at first, but once the muscles have grown and are accustomed to moving differently, my body won't hurt so much and life will resume as normal--as normal as can be expected with a toddler with diabetes. I have a toddler with diabetes! (I still cycle through episodes of denial, so it's good to say it aloud once in a while.)

 I'm finding a lot of hope in a T1D support group I found on Facebook. Finally people who speak my language, moms (and dads) who feel what my heart feels and who are so validating in so many ways! It's like having a whole new family. They have advice from who to leave you with to what scale I should buy for carbohydrate counting. The best part is that they are so uplifting, especially on days like today when I'm feeling so inadequate.

Part of why life has been so hard lately is that you've hit your honeymoon phase. And hard. No matter what I did yesterday, I couldn't keep you above 100. Today isn't much better. Again, not good on Mommy's nerves. It is all I do all day long, all I think, breathe, eat and sleep. Numbers run through my head on a constant basis: blood-glucose levels, carbs, insulin doses, ratios---all numbers! I think it's getting to you too. Every time I test you now, you grab the meter and say "Four-five, Mom! Four-five." Even you know it's all about the numbers! Let's just hope that meter doesn't read "four-five" very often when you're tested. For now, I'll just keep polishing my rusty math skills and flexing my diabetic muscles until all of this feels second nature.

Our day, someone else's video

Just in case you ever wondered what our day is like having a 2-year-old boy with Type 1 Diabetes. This video only begins to touch on our daily routines. But I feel so much for this family as I really KNOW what they are going through.
Life of a Type 1 Diabetic from Melissa Zimmermann on Vimeo.

Guided

As we begin down this diabetic road, I can't tell you how many times I've felt guided by an unseen power.  And I've learned to trust it.

Saturday was a crazy day.  I had helped your sisters with the parade they were dancing in.  It was hot and we were gone all morning.  By the time we returned, it was afternoon.  You had been outside with dad, working on the yard like you so enjoy doing, but at first glance, I knew you were ready for something to eat.  Your face was flushed and you weren't acting like yourself (just slightly grumpy).  Sure enough, upon testing, you were under your target level.  I got you lunch and got you ready for your nap.

As I got you ready, I noticed how tired you looked and just knew you'd fall asleep immediately.  I didn't worry about your BG because you had just eaten.  Several minutes after I put you down, I noticed you were still making noise in your bed.  Weird.  You should be falling right asleep.  I took a shower and still heard noises in your room afterward.  Then I got that feeling.  I decided to just check your BG to see where you were.  By the time I went downstairs to grab the meter and back up to your room, you had fallen asleep.  I tested you.  41?  41!!!  I raced downstairs, grabbed you a juice and stuck the straw in your sleeping mouth.  I felt relieved when you started to drink.  I told Daddy and he and the girls jumped into the action.  Alli grabbed some Skittles at my request and Dad came upstairs to help me.  You were out of it.  Within minutes, however, and as soon as that sugar got into your bloodstream you were jumping out of Dad's arms and running around the room.  Amazing.  We would forgo the nap that day.

Here's what gets me.  What if I hadn't have acted on that prompting, that Mother's intuition?  What if I just said, "Oh, he's 2, sometimes it takes him some time to fall asleep.  He's ok."  And, more importantly, how do I inject some of this intuition into your Dad?  I make myself sick thinking about all the "What ifs".  So I won't.  I just know that I'm grateful for those gentle (and sometimes more urgent) reminders.  I personally believe, because of my LDS faith, that these promptings are from a Higher Power, One who really does know, from the Holy Ghost.  I can't explain how grateful I am for that. I have learned to trust it more over the last few weeks than I ever have before and I will continue to act as each prompting comes.  I believe it may be the only way to keep you safe, since there is no way for you to tell me when you are low.

These lows are so hard for me right now.  I'm trying to be patient through this stage of it all, but this honeymooning ain't no honeymoon, Sweetie!  I think there are days, like Saturday for instance, that your body will produce insulin, so when I give insulin, it is as if I'm giving you a double dose.  There is no way to know for certain when that will happen.  Friday, only the day before, you were running extraordinarily high.  I suppose that was a day where your body decided to produce nothing.  The frustrating part is that I have to try to guess what your body will do daily!  Ugh!  Consequently I am testing you much more frequently.  I apologize for that right now.  I don't want to--but until you can let me know that you are feeling low, it is what I have to do.  It won't always be this way.  I hope.

I love you Ty.  I'm so glad you're mine.  We will get through this, as long as we are both patient with the process.

Big Ball of Panic

Yep, that would be me.  Your mom is a nut case.  Simply put.  What is frustrating is that I'm not sure how to remedy it.  Since your diagnosis (which seems like forever ago!) I've been having what I think are anxiety attacks.  I will be doing nothing, sitting there, when BAM--a shot of adrenaline will race through my body and I suddenly lose all energy and I feel like I'm going to pass out.  Not just sort of pass out, but like drop to the floor, careful-not-to-hit-something-on-the-way-down kind of pass out. Often I have to steady myself and really focus on my breathing.  It is the weirdest sensation and almost feels like I'm dying.  I hate it!  I don't know how to stop it!  Is this normal?  It's weird because I think things are going better, but then there is this whole anxiety thing to deal with.  The last thing I need is to get on anti-anxiety medications.  Maybe yoga would be cheaper.  Yah, maybe I should try that.  Sigh.

Yesterday I tested you like fitti-billion times.  You had a low after breakfast and then we went swimming so I was just certain you were going to crash at some point again during the day.  One pattern that I'm starting to pick up on is that exercise really drops you, so that is why I tried staying on top of it.  I tested you probably four different times while we were swimming.  But guess what?  You were totally fine!  So what is wrong with me? I don't want to be the kind of mom who will poke their kid 10-20 times a day!  Like I said--big ball of panic.  I'm not liking myself very much lately.  My nerves can't seem to handle much these days.  Go figure.

Dad and I went to the new patient orientation today and left you with Aunt Alison.  She is a nurse and has a diabetic daughter so it was an excellent choice.  You did awesome, but were so busy!  Poor Aunt Alison. But I was so glad you were with her.  The class was informative and reassuring.  There were other newly-diagnosed families there.  At one point we had to go around the room and say what the lowest and highest our diabetic child has been since they were released from the hospital.  One little girl has had lows in the 20s!  Imagine the anxiety level I'd be experiencing if I were her mother?  Luckily, the little girls' mom seemed cool and calm.  Why can't I do that?  As it was the first time I had left you, I experienced some pretty heavy duty panic attacks the entire 3 hours we were there.  Poor Daddy.  He has to deal with ME on top of the diabetes!  Maybe it is the going on 2-day migraine I have, or the Excedrin I took for it--or the Diet Coke I drank just before  (caffeine does weird things to me).  Whatever it is, I hate the feeling.  Once again, yoga.

So, on we trek.  They say the first month is the hardest.  I am holding on by my fingernails until then.  We can get there, right?--only a few more weeks.  And then I'm certain I will feel much better about all of this and you will have a fully functional mother again.  Until then.....

Namaste.

Today was a doozy.

Ugh.  On the wings of my oh-so-confident "we can do it" post, I have a day like today.  I've been a mess.

It started out okay.  Yes, your numbers were a little low when you woke up, but not awful.  Grandma called to get your readings for the doctor just after breakfast.  As I was giving them to her, you started to wrestle with your older brothers like you love to do.  Somehow you fell and took a good bump to the head on the carpeted ground.  You cried, I checked things over (still on the phone) and Kendra picked you up to hold you.  A few seconds later, I noticed you go completely pale.  Ghostly pale.  Lips disappeared completely, blending into your white face.  Your eyes dilated completely and rolled back, your body limp.  I'm freaking out at this point and grabbed you.  Grandma on the phone is giving directions, telling me to put your head down, to get your circulation going. Breathing, yes, but unresponsive, at least for a moment. I've seen this two or three times before with you (this being the worst so far), each time when you've hit your head.  The hit has never been extremely hard, but I think the shock factor of it causes you to faint.  This happened to my twin nephews when they were young too (which have now developed to very infrequent seizures).  I don't think it is related to your diabetes at all.  But it did wipe you out for a while afterward.  You had to lay on the couch for a good half hour.  So is this just another blessed genetic trait you've inherited?  Am I supposed to put you in a glass box and tell everyone to stand back or else you might break?  I think I'll have to talk to your pediatrician about it.  I don't think I can handle one more scary thing with you or I'll scream!  You have not helped Mommy's heart much today.  Stop scaring me! 
 
I think you have officially begun your honeymoon stage.  Just the word should generate feelings of bliss and joy, right?  So why do I dread this stage so much?  Your numbers have been low, which should be a good thing for a diabetic.  Truth is, lows frighten me.  Especially since you are only 2.  We've adjusted your ratios again in hopes that you won't drop too low.  We also don't want you to creep up to the scary highs too.  A happy middle ground is what we are seeking. 

I've had an outpouring of support come through today.  It couldn't have come on a better day, as is evidenced in the above paragraphs.  I needed the words of encouragement from friends, neighbors, even complete strangers.  I love it.  I welcome it.  Thank you to everyone.  It's not sufficient, but thank you.  I hope to repay the kindness someday, somehow. 

Sleep sounds really good right now.  So, please little T, no more fainting, no more lows.  At least for tonight.  Mommy is tired.  I'll tackle the giants tomorrow, but for now, I welcome sleep.    

We can do it!

Spent a fun-filled day at a park for a family reunion yesterday.  I loved watching you run, slide and play with all your cousins.  The only problem was the array of desserts and chips just within your little arm's reach.  Thanks to Mom and Dad's hawk-like eyes, disaster was averted--all except for one Cheeto and one tortilla chip (you have quick hands!).  Because it was a potluck, mostly everything was homemade, which meant we had to play the carb-guessing game.  I think we guessed pretty close and everything turned out. I expected your levels to be low following all the running and activities of the day.  You fell asleep on the way home and I tested you once we got home.  415?  What?!  Immediately I thought you had sneaked a cookie, and maybe you did.  I'll never know!  What baffles me more is that only a few hours later, at bedtime, you were down to 76.  I've never seen such a sudden drop!  What does that mean?  How will I ever keep up with your changing levels? Ugh.

Like I said, Kendra returned from girls camp last week.  The camp had a theme of "We can do it" and used Rosie the Riveter as a sort of mascot for the week.  I've always loved what Rosie stood for in history, the courage of the women during WWII astounds me.  During camp, the camp leaders talked about the figurative war the girls fight every day between forces or good and forces of evil.  The theme gave the girls courage to choose the right in all they do.  I had the opportunity to go up to camp every evening and participate with those inspiring girls. 

I have been feeling so weak, so incapable of tackling the big D-word with you, my little 2-year-old.  I have often found myself discouraged, but you know what?  I think this theme carried me through this second week since your diagnosis.  For the first time, I feel like we really CAN do this!  You, me, Dad and the huge support system we have surrounding us.  We really CAN fight this war against diabetes and WIN!  I know it!  That thought alone has given me a lot of courage.  In fact, today seemed so routine that I almost forgot you were diabetic.  Your brothers and sisters have been romping and playing and grazing on food all day like they usually do on Sundays.  More than once I've had to catch myself handing you something to munch on just like everyone else, but before I let discouragement seep in again, I catch myself.  And remember.  The old normal is transforming to the new.  

So, I hope this message will resonate forever in my heart and yours and anyone else who struggles each day with diabetes (or anything for that matter).  I know I will have my off-days, I expect it, but for the most part, let's help each other knowing that indeed WE CAN DO IT!  Okay my little T?

I shouldn't take cold meds

Your levels were all over the place today.  You woke up lower, 76 but then at one point in the day, you were 265!  I know I am partly to blame.  I have been sick and the cold medication I took last night lasted clear into this morning, so much so that I wasn't able to wake up at the usual time and test/feed you at the usual time.  I only woke up when Grandma called.  Then I heard you happily talking away in your crib.  It was a pleasant sound.  It told me you were alright.

But then I tested you.  I immediately gave you a Juicy Juice to bring you up within range, then started to plan breakfast and prepare the insulin.  All the time I was groggy, not feeling great.  It wasn't until I had given you the shots and you were 10 minutes into your meal that I realized my math was off for your breakfast! So I needed to give you another shot, 1/2 unit.  I drew up a full unit.  See?  Fuzzy.  Bad cold medicine.  Luckily I noticed my blunder before I gave it to you.  Ugh.  I was so mad at myself.  And that is how our day started.

Kendra got home from girls' camp and you were so excited to see "Jawa".  You stuck to her like glue, bringing your snack to sit by her on the couch.  It was so, so cute.

You gave me a scare today.  Just before lunch, I was changing your diaper when I noticed you seemed tired.  I asked you if you were tired and you said, "Yah."  It was time to test.  I carried you downstairs and positioned you on the counter as usual, and proceeded to get the meter out.  You laid down on the counter.  You never do that.  You looked a little glossed-over, like you were going to pass out.  I asked if you were okay and you just stared.  Panic button pushed at this point, I grabbed a juice box and made you drink it.  Hands shaking, I tested.  143.  Huh?  So then I was mad at myself for panicking.  Could it be the cold medication again?  Is my judgement that off?  How could I have been so wrong?  So I waited 15 minutes like they told us to do at the hospital, then tested again.  147.  Now I was really confused.  Wouldn't the juice have brought your levels up more than that?  It certainly shot them up from 76 to 127 in a matter of minutes this morning!  So what was going on here?

I called Dad and he was cool and collective as he usually is.  He made me feel better, especially with the last thing he told me.  He said, "Don't question yourself.  You are there and see him.  As his mother you will be guided.  You followed your instinct and that will be right the majority of the time."  I had to add "except when I'm on cold meds!" I think it was a good reminder.  So much of what lies ahead will come down to instinct.  What will be the best dosage?  Are you really feeling low even when you can't tell me?  It's just so hard to live each day in that state of panic, wondering if you are going to suddenly crash.  It's not good on my heart.

We decided to venture out today.  I've been keeping you pretty close to home because leaving just gives me anxiety.  We took the family to dinner--ended up at Paradise Bakery.  Can you believe that even though they are advertising a poster for the upcoming "Find a Cure for Diabetes Walk-a-thon", they don't carry the nutritional information for their food?  How does that support your local diabetic?  So,we had to guess onthe carbs.  [Enter stress once again.]  How are we supposed to know?  It's so nice when everything is all mapped out on a nice little side label on every package.  But I know that it won't be possible much of the time.  Dad and I did the best we could, gave you your shots (I hated doing that in public) and you were blissfully happy eating your food, especially the divine chocolate chip cookie for dessert!  I think we must have guessed pretty close because your level at bedtime tonight was pretty close to your dinner levels.  We even went to Trafalga afterward and let you run and play like crazy with all your brothers and sisters.  We all came home tired.  It made me feel like a good mom.  If I can find my bravery again, maybe I'll venture out next week too.  Maybe.

A Moving Target

Trying to regulate blood-glucose is "like trying to shoot a moving target" -- at least that is how I've heard it described. It hasn't been easy the last few days.  You'll have a pretty good day, where your numbers are in the 100s (like 2 days ago), well, at least for half the day.  And then you'll have a day like yesterday, where you were in the 300s!  I don't get it. We did nothing differently.  It's like we have to constantly tweak the insulin levels, both with Novolog ratios and Lantus.  Will we ever find one that will work perfectly for your little body?  From what I hear, I can expect it to be constantly ever-changing.

Today we used a different ratio for breakfast 1/2:10 and then the usual 1/2:15 for lunch and dinner.  We also increased your Lantus from 1 to 1.5 at night, keeping 4 units in morning.  Consequently you have consistently stayed in the low 100s all day.  I know that sounds great, and I should be elated, but I guess it is a little unsettling for me.  It's like trying to see just how close to the edge of the cliff we can drive without falling off.  That is supposed to be your "safe" zone.  How do I prevent you from falling off that cliff?  And how is that supposed to be safe for you?  I want you as far away from the cliff as possible!  But then that's not good either because being far away from that zone means your numbers would be high.  I'm so used to seeing the higher numbers that now I'm panicky that I'll turn my back and you'll crash because you are hovering so close to the 100 mark.  And what will that look like?  Will I notice the signs in my 2-year-old?  And my worse fear, what if it happens at night, while you (and we) are sleeping?   

(Sigh)  See, I drive myself sick with worry 24 hours a day.  I even tried to go clean the dance studio today (so your sisters can keep taking dance) while Alli was home and you napped.  Problem was, I got there and into my cleaning when she called and said you wouldn't nap.  Ack!  I made her leave you there for at least a half hour, but eventually she had to get you up.  You should have seen me, running like a crazy woman through the entire studio, cleaning as fast as I could, so I could be home, be the eyes.  Again with the questions.  What would happen if you crashed while in Alli's care?  She wouldn't know what to do or even what to look for.  I know there will have to come a time when I can leave you again. But not sure how to get there.  I'm not sure how to trust anyone with the life of my baby.  Does it mean I have to teach them shots? How to count carbs?  How to dose for insulin?  It's such a huge undertaking that for right now, it's simpler to say I'll just never leave you.  Not logical.  But simpler.

A teaching moment

We sat the rest of the kids down tonight and talked to them about diabetes.  They had a lot of questions.  Colby wanted to know how you got it.  He wondered if he could catch it.  Kendra refused to ever babysit you again, but I'm sure that is her fear speaking.  Andrew wanted to know what you would do if your blood glucose was too high.  Alli asked about what foods were best for you.

We watched a video that was extremely helpful in explaining a lot of things.  What a pancreas is, what to do if you have high glucose levels and low glucose levels.  We also watched an online demonstration about the Gulogen needle, and showed them ours.  I hope we will never have to use that, but it was nice to be able to explain it all to them should an emergency arise.  Here is the video:



I'm sure there will many more questions as time goes on, but I think your brothers and sisters are feeling a little more settled about this new change.  I hope, at least, they will feel comfortable asking questions and talking opening to me or Dad about diabetes.  I think the more open we are, the better it will make things for you as you grow up. 

Day 7--Finding Peace

                It is hard to believe that only a week ago we took that very first blood-glucose test, you were admitted to Primary Children's Hospital and our world started spinning.  So much has happened since then, so much information has been given to us, and yet, you are my same Ty-Ty-- vibrant, full of energy, full of smiles, full of life.  And let's not forget full of a hearty appetite!  Prior to last week we rarely saw an empty plate for any meal.  Now?  Well, let's just say I have to guess high and hope your desire to keep eating doesn't outweigh the insulin you were given. 

                In one week you have had 37 finger pokes and 34 shots (give or take), more than I think I've had in my lifetime.  You are so brave.  You are my hero. 

                Went to church today, despite my reservations.  I wasn't feeling strong enough to face the ward members and all their hugs and "I'm so sorrys".  I wasn't ready to explain the story over and over again.  I wasn't ready to try and figure out the nursery snack and what you will be allowed to have.  I wasn't ready to say no to you.   The only reason you and I went today is because you kept asking to go to church.  You love church.  So I put my selfishness aside, put on my happy face and walked through those doors.  I knew I was in trouble when the first person stopped me.  Tears were just going to have to be permitted today.  So I cried as I told everyone who'd ask that I was doing "fine".  I cried when someone would throw their arms around me.  I'd cry when I had to recount the story over and over again of how we knew something was wrong, how much weight you'd lost, and how you're doing today.  All the while, there you were, running afoot, squealing and laughing, unaware that anything in your life has changed whatsoever.  So what's my problem.

                Our sweet bishop pulled me aside in the hall today. He is concerned about me, about Todd, about our callings being too burdensome at this time.  Bishop Fluhman explained how his sister was diagnosed at the age of 2 and he got tearful as he recalled the burden it was to his mother--the burden that it is so raw with me right now.  Because Kendra just got into the Young Women's program and I love working with the girls her age so much, I told him to give us both Todd and I a few weeks to decide if our callings are too heavy right now.  I was so grateful for an understanding, inspired Bishop who loves us and speaks for the Lord, words of comfort to our healing hearts.  This afternoon, he knocked on our door, handed me an envelope and said, "I had some thoughts.  We love you."  Here are his thoughts:

Todd and Melody,

I was sitting in the Beehive/Laruel lesson today and, when asked about our favorite scriptures, immediately had this one come to me.  It struck me while reading it--powerfully--that it most especially applies to you right now:

                "I will go before your face.  I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." (D&C 84:88)

I am heartened by my conviction that you are emphatically not alone.  I suspect that you'll look back on this period and remember the burdens, keenly, but also the treasured evidences of divine presence.  My prayer is that seen and unseen hands will bear you up and give you strength.  I trust that angels hover over Ty already.

I love your family.

In love, faith, and settled conviction,

Bishop Fluhman

                I've had the thought, and not only once, that my father is indeed one of those heavenly angels hovering around Ty and around me and my entire family right now.  He is aware of our situation and is involved.  I know it.  As is our Heavenly Father.  How grateful I am for that knowledge. 

                 

Day 6--1st Time Grocery Shopping

                I went shopping because we were out of some of the essentials.  That was a new experience.  It was as if I was walking around Walmart with brand new eyes.  Everything looked different now that I'm thinking about food for a diabetic, and a toddler diabetic!  I wouldn't even look at fruit snacks or Pop-Tarts.  I know they told me at the hospital that you can eat whatever you are used to, but I don't buy that.  Your levels are way high, out of your target range.  And you are eating more than I have EVER seen you eat--as much (or more than) your older brothers!  I'm not just going to fill you with sugary, carb-loaded foods anytime you like, only to compensate with larger doses or insulin.  

                I'm so used to just throwing together meals, at the last minute, from what we have on hand.  I can't do that anymore.  Meals are going to take more planning, more preparations, more time.  And  I thought shopping for a family of seven was tough and took great planning before you were diagnosed!  I'm not ready to take on meal planning just yet.  Right now I'm just trying to get by--learning the insulin ratios, shots, meals and snacks routine, carb counting, etc.  I ended up getting far too many drinks--all for you: juice boxes for lunch that were surprisingly low, Juicy Juice 15 carb boxed drinks in case you are low, and my favorite find, Soy Chocolate milk!  You love chocolate milk, but every kind is loaded w/ carbs.  A cup of this Soy Chocolate is only 5 carbs!  Woo-hoo!  And it tastes great and you love it.  It was my victory for the day.  I'll take any victory, even in the form of chocolate milk, at this point in our journey.  I will tackle the beast of meal planning hopefully another day.

                Something cute happened last night and it was evidence once again of how you are integrating this new lifestyle so naturally--so much better than I.  Dad and I got up to test you in the night.  Before we walked in, you called out for Dad, but when we opened the door we found you sleeping rather soundly.  Just as Dad leaned over your crib and cocked the lancet to pick a finger, you lifted your hand to give us a finger.  We couldn't believe it!  It's as if, even in your subconscious, you know that click means it's time to test.  So he tested you as you quietly slept.  The meter beeped to indicate the blood received was sufficient, to which you said in your sleep, "beep."  It was so cute.  Part of me was saddened once again that you have to take on such an overwhelmingly monstrous trial at such a tender, young age, but it is your faith and courage that drives mine.  You were high; 399.  So we gave you 1/2 unit of Novolog.  You woke up today at 111.  We called Dr. Donaldson and he increased your Lantus to 4 units in the mornings and 1/2 unit at dinner.  He agreed w/ Grandma's carb ratio switch, so we'll stay on 1/2:15 for now.

                Today you've been helping us out in the yard, pulling weeds and mowing the lawn.  You love to help Dad push the lawn mower, wear the same fisherman-style hat and working gloves like him.  It has got to be one of the cutest things to witness.  I worried about you out in the heat of the afternoon summer sun and what that would mean for your glucose levels, but so far, so good today.

                You just got up from a nap and prior to your snack we tested you, per Dr. Donaldson's request.  You were 228, so a bit high.  I had thought you'd be lower today--dr. said you would be.  Why can't we get you in range?  So, I gave you a Gogurt, a cheese stick and 3/4 cup of light Gatorade--but should I have held off on your afternoon snack since you were high?  Something to ask the doctor tomorrow.

Day 5--Learning and growing

                I mopped the kitchen floor today.  I did a few loads of laundry.  I even had a neighbor friend come over to play with Colby.  All of this gave me hope.  Hope that life will indeed resume and just maybe you and I won't suffer through each day trying to figure out this thing called diabetes. 

                Ty, you inspire me.  Truly.  You're facing these changes like a champ.  It truly blows my mind.  I think you are the reason that today has been a much better day for me.  For the last few days, just before we test your blood-glucose levels, we ask which finger you want to poke.  You'll choose a finger and not only that, but you want to push the button that pricks the needle into your finger!  You push the button and no tears, no whining, not even a flinch.   Then you will put your own blood on the strip until you happily hear the beep and you'll say "Beep!" and chuckle.  Wow.

                Shots you don't love.  Usually when you see me coming toward you with a syringe, you take off running as fast as your feet will carry you, giggling because to you this is a game.  Heck, I think I'd run too if I had someone coming at me with a needle!  This morning you said, "Andrew shot! Andrew shot!"  I think you were ready for someone else to have their turn.  We choose the location for the shot, trying to rotate with each one, and get you in position.  It is easier when there are two to hold you down since you wiggle so much, but I have to hold you by myself most of the day.  You will whine, but you've gotten to the point where you don't really cry.  It's over before you know it and then you are up and running again.  You're a rock star.  I don't know how you do it, but your courage is teaching me courage.  Your faith is boosting my faith.  Like I said, a true inspiration to me.  

                Though we have yet to sit the family down and really explain what is going on in your little body, the kids are picking it up with little things we've told them here and there.  Today, while Andrew and Colby were playing a computer game, an advertisement popped up on the sidebar and Andrew ran in and said, "Mom, there's someone who has what Ty-Ty has!  It says it on the computer!"  A little while later, they both were playing and I overheard Colby say in his cute voice, "Andwew, yo bwud shugow is too high!"  It made me laugh.

                Got all your prescriptions filled today and again a wave of panic came over me.  This lifelong disease is not only going to cost us a lot more money than we have right now, but these supplies are a constant thing, some will need to be refilled monthly!  Don't even get me started on insurance!  Okay, just one example: Even though the prescription for the syringes is an order for 350, my stupid insurance will only allow for 100 at a time.  Since we use 5-8 syringes per day, 100 won't even cover us a month.  And these are supplies that you NEED to have!  The lady at the pharmacy said it's the insurance's way of getting more of your money.  Really?  As if we aren't paying enough for all this?!  As if we aren't already suffering from the news that our 2-year old has a lifelong disease that will need constant care!  I'm rather frustrated and I'm going to leave the calling of the insurance to your dad.  Grandpa Ehlert said he'd call too, since he dealt with the same problem with Spencer. Besides, he likes those sorts of things (his own words).  And he does.  The family has been so great to rally around us.   We are so blessed. 

                Dr. Donaldson has taken a personal interest in you, probably because he knows Grandma so well.  (I saw him tease her at the hospital and I'm convinced he's got a crush on her, but don't tell her that!)  He gave us his personal cell phone number to call him each morning.  This morning he had us up your Lantus to 3 units in the morning and 1/2 unit at dinner.  All day your readings were still in the high 300s.  So at dinner Grandma Hillam decided to change your ratio to 1/2 unit to ever 15 carbs (instead of 20) for every meal.  By bedtime tonight you were down to 131.  Only time you've been in range!  I'm afraid you will drop too low in the night, though.  Grandma said to give you a few more carbs for your snack tonight, so instead of 15, we gave you 25.  I hope you'll stay in a good range in the night.  We'll check you again at 2:30 a.m. and adjust you if we have to.  I'm learning.  Slowly, I'm learning.

Day 4--Our New Normal

                Today you woke up low.  87--lower than you have ever been since we've started this process.   I noticed your hands shaking a bit while we were getting ready to test and knew.  Grandma Ehlert said that isn't low and that it's nothing to worry about.  Grandma Hillam said it is indeed low for you.  I immediately got you some juice and had you drink some.  Then I started figuring your breakfast and made some calls (both Grandmas and Daddy to inform him and double check my numbers).  Everyone else assured me you'd be okay, but inside I was stressing out.  How am I going to do this day in and day out?  What if you were lower?  And surely you will be at some point.  Can I even leave you to take a shower because what if your levels suddenly drop,  you're all alone and I'm unaware?  I feel like I need to watch you constantly, always analyzing, guessing where your levels are.  I don't want to be like the OCD mom I heard about at the hospital who would test her child 10 times a day.  I couldn't do that to you.  Like right now, you have been napping for about 2 1/2 hours.  Does that mean you are just extra tired or does it mean that you are so low that you won't wake up on your own?  It's all these unknowns that has my emotions out-of-whack.  I'm a planner.  I like to know what to expect.  I like to see the end from the beginning.  Right now, there is no end in sight, no light at the end of the long, dark tunnel.  Living in the abyss of the unknown area is not settling well with me. 

                Today has been hard.  Really hard.  Yesterday I felt stronger.  Today I broke again.  Daddy went back to work, and life was to resume as normal today: dance carpools, birthday parties, lessons, etc.  I'm stumbling through this day, holding my head as high as I can, but truth be known, I keep having these little breakdowns.  Talking to my mom, or a friend, or the flowers that were delivered from Dad's work today... . all of them push me over my strength level.  Tears are too close to the surface for me and every so often I have to duck into the bathroom for a 60-second silent sob, then wipe my tears, blow my nose, recompose and then go out to the kitchen where the rest of the kids are waiting for me to make the next meal.  I have to once again hold my head, get my hands into the housework and try to be the normal Mom they all know. 

                How do I get to normal again?  The normal I knew before has died and I need to mourn the loss of it, bury it and move on, right? Learn a new normal.  That's the thing. . . this new "normal" isn't settling into our busy lifestyle or my heart very well.  Not sure how to remedy that.  Grandpa Ehlert says that I need to simplify and prioritize; that the other kids will have to learn that you come first right now.  I get that.  But, I can't get myself to fully agree with it.  Kendra just started on pointe shoes in ballet and loves it, Alli loves dance too and both of them are dancing almost every day, then they have violin, Andrew has karate, soccer and soon piano, and Colby just wants to golf all the time. How is it fair to have them put their hobbies and activities on hold?  I want to be able to give all you kids attention and love equally.  It is skewed right now because of the needs you have.  In fact, I think Colby feels that.  Since we've been back, I've noticed him acting out.  He'll hit you when I turn my head, or hit/jump on the dog, hit the other siblings for no reason.  He's not a hitter!  I'm worried about him.  I think he needs some good one-on-one time with Daddy or me.  See!  It's things like this that get me going crazy!  I see so many needs of my kids and I'm just one person.  I'm spread so thin and I can't seem to figure out how to organize my time so that I can be with each of you kids at least some time during the day.  Everyone assures me it will calm down and not be this crazy forever; everyone is convinced that I have the "stuff that it takes" to get through this.  So why do I so vehemently disagree with them?  Maybe because right now I feel so, so weak.

                I guess that's where faith comes in, something I lack. My cousin reminded me today that through the Lord, all things are possible (Jer. 28:11-13).  If I trust Him, lean on His arm, He will hold me up and pull me through this fire.  But first I have to believe He will. (Prov. 3:5)

Day 3--Independence Day?

Today sure doesn’t feel like Independence Day.  Independence Day represents freedom, yet I’m feeling much of the opposite.  Diabetes has limited us, trapped us, in a way.  No longer can we be spontaneous and grab whatever food is in the fridge and run to the park for lunch.  No longer can we maybe skip a meal because we are running ourselves crazy at the zoo or somewhere else.  No longer can I leave the house without a cooler full of food, insulin and syringes.  Again, overwhelming.  Todd took the rest of the kids last night to Great Grandma Startup’s to sleep there, run the Freedom Run today, watch the parade and go to the BBQ.  I stayed home with you.  It was the first year I missed this tradition. I don’t blame you.  I really don’t.  It’s all a part of how I’m processing and working through this grieving process.  In fact, I still believe it was the right decision. 

When I say “grieving process” it is because this is a very real loss.  A loss of the childhood that we once thought you’d have.  A loss of spontaneity, of time, of a future that you may have wanted.  Our nurse told us that you can never be a truck driver, a commercial pilot or serve in the military.  The pain I feel is a real loss, though one difficult to explain. 

We got home from the hospital last night and I just don’t feel ready to be away from home with you yet, when I’m still trying to get my feet under me.  What do I do when you see a popsicle at the BBQ that you want and we’ve already dosed you for your lunch?  What do I do if you want to graze on the assortment of cookies and other desserts laid out on the tables?  Or if your cousin has licorice at the parade and can share with everyone but you?  How do I explain that to a 2 year old without looking like a big, mean Mommy!?  Yes, it is better that I stayed home with you today.  You’ve been my little buddy and Maiya has sure missed you so you 2 have spent quality time.  You haven’t complained at all. 

Grandma Ehlert slept here last night, helped me with your middle-of-the-night blood check, your carb counting for breakfast and double-checked my math and insulin draws.  She also brought a truckload of food that Grandpa picked up at Costco, things your Uncle Spencer (also diabetic) always liked to snack on, small 15 carb snacks.  Those kinds of things are going to be good to have around.   I got rather emotional when I saw how much food she brought in.  With cupboards that always seem bare, it was nice to see them full for once.  She also cleaned out a cupboard and set up a “diabetic station” for all your monitors, syringes, alcohol wipes, strips and journals.  Ironically this station takes place of our once candy cupboard.  Grandma started pulling everything out, throwing things away and Kendra asked, “Well, where will our candy go?”  Grandma just chuckled.  It will be a good change.  A necessary change; one I don’t mind.

 Your levels are still in the 200 range today and your target range is 100-200.  Your ratio right now is for every 20 carbs you eat, I’m to give you .5 units of insulin and for every 100 over 200 after tested, you get another .5 units of insulin.  We gave you 2.5 units of Lantus last night.  We’ll call the doctor in about an hour and find out if he wants us to change the ratios again.  At the hospital, your ratio was every 30 carb: ½ unit.  You get 2 free 15 carb snacks.  Any snack above 15 and I will need to give you more insulin.

I feel so blessed to be surrounded by a great support system.  Both Grandmas will be very valuable.  Grandma Ehlert did this entire process with Spencer and knows so much of what I’m going through and has been so helpful.  Grandma Hillam is the juvenile diabetes educator at Primary Children’s Hospital.  So, although she can’t know what I’m dealing with on a daily basis, she has been teaching parents and kids about diabetes for most of her life.  I also have at least 3 families in my ward with a diabetic.  In fact, I called MaryEllen Solomon over for our lunchtime insulin draw today to have her double check my numbers and hold you down.  Her son on an LDS mission has diabetes and was diagnosed at age 11.  Not all parents can go home to the situation that I’ve been blessed with.  I’m not sure how I’d get along without them.

I’ve heard people tell me that it is a good thing you are so young because you will never know any different, that this will be the only life you know.  I’m not sure that gives me much comfort, to be honest.  Other worries I have are: never allowing you to feel like you are “broken” or that this is an illness.  I don’t ever want you to feel like you are limited in your capabilities.  I hope you will always be a confident boy and I feel the responsibility to instill that in you at a young age.  I have a hunch that your spirit came prepared for the challenges that lie ahead because, dang, you are one strong spirit!  You touch every life you come in contact with.  You always have.  I don’t know a person who has met you that has not been drawn to you.   Seriously.  I also don’t ever want your siblings to feel like I’m favoring you or treating you differently.  I don’t want YOU to feel like I’m favoring you.  This new mountain to climb will be climbed as a family, together.  All our eating schedules and what we eat will be changing.  A diabetic diet is a healthy diet and can only help the rest of the family.

                Dr. Donaldson told me a story that has left an impression.  It choked me up as he told me.  A mother relayed a story about a time when she was introducing her 4-yr old son (diagnosed at 2) to someone and that he was a diabetic.  The son quickly said, “I’m still a normal boy, Mom!  I just have diabetes.”  So that is what I pray for you.  That you will always feel like a normal boy and you will never, ever feel limited.   

Day 2--Angry

Most of today and part of yesterday have been about education.  We’ve had nurses and doctors, dieticians and social workers, residents and aides, all throwing so much information at us that my head is spinning.  To say that I’m overwhelmed is a huge understatement.  Many times during our “lessons” I feel my eyes welling up and my throat tightening, emotion taking over again.  It’s all too big.  It’s all too heavy.  And I am not strong enough.  I can’t do it!  Carbs, glucose levels, insulin measurements, Lantus, Humolog, Novalog, ketones, Glucagon—these are all things I know nothing about! I haven’t even heard of half of them!   And now I’m expected to take my baby home and be the expert because if I don’t you could die!  Isn’t that what they are essentially teaching me what to do?  How to keep my baby alive? So I HAVE to do it—there really isn’t an alternative.  I won’t ever get a break from it, not even a breather.  In fact, I’m not even sure when Mom and Dad will ever be able to go out again.   You will need constant care, constant supervision until the day that you are out of my care.  Yes, anger settled in today.  I keep trying to find a way out of all of this and reach only dead ends.  I don’t want this life!  I don’t want it for you and I don’t want it for me!  My burden was heavy enough already!  How will I fit diabetes into it?  And for my 2 year old?!

So many friends, family, neighbors have sent well-wishes, prayers and concern our way.  They want to know what they can do.  Answer: Absolutely nothing.  “I’m so sorry, we are praying for you, what can I do?”  When really, deep down, they are saying, “Whew, sure glad that’s not me and my kid!”  Unfortunately, there really is not a thing anyone else can do.  Oh how I wish they could!  Take it away!  Make you not have diabetes!  Wake me up!  I know I’m not alone, that this happens to hundreds of kids all over the world, but to one so young?  It just doesn’t seem right.  At least if you were older I could explain a few things.   

We had to start giving you shots today.  That wasn’t fun.  Mom and Dad practiced on each other with saline.  The needles are so thin that there really isn’t much pain with the injections.  You really don’t like them, nor the finger pricks.  We are trying to involve you as much as possible, though.  We ask you to pick a finger for us to test and, even though you are crying, you’ll give us a finger.  It breaks my heart.  You are our sweet little boy and I want to take this all away.  Somewhere in the deep recesses of my heart I believe this disease will shape you into the man that the Lord needs you to be.  You will bless others through this disease.  It gives me a spark of hope.

I think the hospital is ready for us to go home.  They don’t say it, but they hint to it.  They’ll be done with education today, but I don’t want to go home.  I’m terrified!  What if I draw up the wrong amount of insulin?  What if I calculate the wrong carbs?  What if you go low and start seizing and I’m alone?  What if, what if, what if?  I’m making myself crazy with all the “what ifs”.  I don’t think I will feel any more secure than I do now about going home if I wait until the morning, so we are shooting to leave today, though the thought of it fills me with anxiety.  You are ready to get home.  You keep asking for your brothers and in your sleep you’ll call out for Maiya.  Your energy level is back and you’ve been running up and down the hospital halls, climbing walls, making us crazy.  It’s nice to have the Ty we know and love back.  You’re also eating so much better!  I hadn’t realized how little you were eating until you started feeling better.  Man, you’re a good eater!  I feel somewhat guilty that the signs may have been there all along, yet I ignored them.  I wonder if I will ever feel comfortable with any of this. 

Day 1 of Your Diabetic Journey

Dear Ty,

                Coming back from our trip Saturday, Dad and I noticed how different you looked.  I noticed it right away in your face.  You had lost weight.  A lot.  It scared me.  I had heard from Ashley and Jana that you wouldn’t eat, and drank and drank and drank water, only to never be quenched.  Everything was going straight through you.  They had to change your diapers every hour.  There was a time where you even filled a diaper in just 15 minutes.  I knew while we were on our trip that there was something wrong.  My heart told me, though I wanted to deny it.  I fasted for you yesterday and I knew again that there was something wrong.  I hoped it was insipidus, not diabetes, like Grandma Hillam (RN and ironically a juvenile diabetes educator) had suggested yesterday.  She came to our house last night with her meters.  When she said your blood glucose levels were over 500, I broke.  I knew what that meant and my greatest fears were confirmed.  You were also spilling ketones (3.1 level on her monitor).  We needed to take you to Primary Children’s Hospital right away.  Your life was at risk.  Daddy gave you and me both a priesthood blessing, the kids cried.  Kendra had a particularly difficult time.  We had just gotten home and now we needed to pack up for a few days and they didn’t understand what was going on or even what diabetes was.

                You were admitted, blood tested and you were so high that the hospital meters wouldn’t register it.  After sending it down to the labs, we learned your blood glucose level was 615.  You also had lost about 5 lbs. in a few weeks and were dehydrated, so they started you on an IV.  It killed me to watch them cause you so much pain and to see you so confused.  If I could take it all and bear the burden myself, I would do it without a second thought. 

                So in a day, Mommy and Daddy traded our comfy Sheraton beds in CA to the cold, stiff hospital beds.  We went from spending sunshiny hours walking the beach to being cooped up between four walls and medical equipment.  I never expected to come home to this sudden change.  But, in a way, I think I had been prepared.  I had a thought (inspiration from a merciful God) before we left that Dad and Mom needed this vacation together; that we needed the time away.  I had the impression that it would be our “calm before the storm” and that when we got back, we were going to have something serious to face.  I tried to suppress the thought.  How grateful I am for that gift from Him who shows so much mercy and allowing my body and spirit to rest and us to bond together in emotion and communication prior to this shock because we so need to be united on all fronts right now. 

I have cried so many tears, thought so many thoughts and to say I worry is an understatement.  I keep thinking about all the horror stories of having diabetes, all the lows that were so scary for Uncle Spencer, how my Grandmother couldn’t feel her feet and cut and burned herself all the time and ended up dying in her early 60s.  I’ve thought about the changes this will mean for you, that you will probably never serve a foreign mission, how I will have to tell preschool teachers, elementary teachers, playdate parents, etc. not to feed you certain foods, how your fingers will be sore and calloused, how this will affect your relationships, your emotional well-being, your confidence. The list really doesn’t end.

So at the end of today, I sit numb, puffy-eyed and still seeking answers, understanding.  Why?  Why you?  A 2-year old who doesn’t understand why Mommy and Daddy are putting him in a strange place with strange people who are poking you and making you bleed?  How could we have prevented this?  Did we not care for you enough?  Feed you the right foods?  Is it because you suffered with a severe case of RSV and dehydration over a year ago?  Or does it really come down to genetics?  That you were predisposed to diabetes no matter what.  Truth is we will never really know and I’ll just make myself crazy looking at every angle with questions.  I just know I feel completely helpless, unable to be the protector that I am supposed to be for you.  I can’t believe we are here.  I can’t believe this is real.  All I really need someone to do is to wake me up from this horrific nightmare so I can see light and learn to smile again.