Let Them Eat Cake!

I was at the public library with C the other day.  As she was browsing for her selections, I found myself thumbing through books on diseases, written with children in mind.  Of course, my eyes shot to the few on diabetes and I grabbed one.  The cover was cute and it was written for very young children, maybe K-2 grades.  The illustrations were sweet.  I flipped through the pages.  It had all the same shocking turns that our own experience held:  illness, hospitalization, diagnosis, insulin injections, finger pokes, nutrition, emotions.  However, one of the last pictures made me pause.

It showed a birthday party scene.  Happy children gathered around a table.  Party hats and streamers.  Each child was enjoying a thick slice of birthday cake, except one little girl.  On her plate was an apple.  An apple?!!  Her face was so sad.  The couple of sentences underneath this picture eluded to the fact that because this child has diabetes, she no longer was allowed treats.  What?!!!

Now, I'm a big fan of apples, really.  But I 'm a bigger fan of allowing my type 1 kid to be a kid, to not make her stick out of a crowd like...like...well, like an apple at a birthday party! 

I quickly flipped the pages back to the beginning.  When was this book written?  1991.  Okay, that is quite a ways back.  But still I question:  Why in the world was this still on a book shelf?  I mean, seriously, that gave me the feeling of a pit in the bottom of my stomach.

I glanced over at C.  Do I show her the few little books I found on diabetes?  Do I show her this one?  I thought to myself, We could talk about how she's on a pump --how we calculate carbs for treats -- how she can certainly have birthday cake.  But I stopped.  She was happily busy looking for a book on Pandas.  Not today, I thought.  We don't need to talk diabetes today...not right now.

I slipped the book back in its place.  As we checked out our stack of books, I kept wondering, Do people really believe that still?  I know the myth is alive and kicking in non D circles.  But do parents of type 1s still think this way?

Birthday cake.  It's a challenge, for sure.  As are a lot of other delicious, carb-exploding foods.  But challenge or not, everyone deserves a piece of cake now and then.  Hopefully, our library just has an old publication.  Hopefully, that book has been updated.  An apple instead of birthday cake?  I don't think so.

Sleep by Number

Well, C's blood glucose was all over the board during the "Sleep-Over." 

The bounce castle...the hypoglycemia culprit.

From 32 after the bouncer...to 378 after birthday cake.  And everywhere in between.  Maybe the first sleep-over should have been with 1 or 2 friends not an entire house full of little girls.  Live, learn.

The 32 was quite unnerving, especially since it was only about a half hour after the party started!  There has only been one lower known number on her meter.  I remember a 27, but that was when she was in the hospital at the time of diagnosis.  Needless to say, I hung out at the party much of the time.

As all you type 1 parents know, it is quite the guessing game, this diabetes.  I thought I had set her up pretty well before the party started.  She was around 180.  I felt good about it.  I knew she was running on excitement and would need the extra "umpf."  But, like I wrote above, she crashed to 32 within a half hour. 

So after helping her come up to 78, I didn't correct for pizza at all.  Two hours later...102.  Good call?  More like, good guess.  The 32 really scared me.

Then came a 230.  But they weren't finished with all the games, nail-painting and jacquzzi time, so I left it.  Movies and popcorn.  (I mean, this party had it all!)  Lots of guesstimating.  Lots of manual bolusing.  I wanted C to be carefree.  I hope she felt like that.  I certainly did not.

So when all those cute little girls were snuggled down into their sleeping bags, I checked her, yet again.  378.  Oh well.  A delayed pizza reaction?  Bad guess on the cake?  Popcorn always sends her sky-rocketing.  How about all those things put together?  We dealt with it.  But I didn't want to correct it entirely.  So I half-bolused it.  I went home (two doors down) and set my alarm for 1:00 am.

I crept in the house about 1:03 and made my way to C.  To my surprise, about 1/2 of the girls still had their eyes open, watching a movie!  C was sound asleep.  Check...68...ug.  Wake her up.  Juice box.  Waited.  66!  Patience.  70.  I fumbled in the fridge for some milk.  Kisses.  Back home.  Set the alarm.

At 3:00 am, I repeated the scenario.  195.  I could live with that...or rather, I could sleep with that.  Back home and back to bed.  The party mom was dozing on the couch and I whispered to her, "I'm done.  I won't be coming in again until morning...well...until they're all awake!  She's 195."

The phone woke me about 7 o'clock.  "They're all up!"

When I got there, C checked in at 108.  Wonderful!  Perfect number to have a donut!  In a couple hours, she's home again.  Check...101.  Whew!  We did it, I thought.  It felt so good to have her home again.

What a sleep-over.

32...48...78...102...230...378...68...66...70...195...108...101.

The "D" Card

Do you ever play the "D" card? I do. I did this morning. Otherwise, I felt like diabetes was going to win this hand.

C's endo appointment is next week. Our doc wanted us to go in to get lab work done a week prior. The orders were to fast for bloodwork. This is tricky, as all you D folks know. Her number needs to be near perfect upon waking, or we miss the opportunity. So I started last week...each morning being prepared to go in with an "in-range" number...but not too low. I never know how long the wait will be.

Well, this morning she woke up at 85! Kind of miraculous in our book. So, we jumped on it. We dressed, put hats on and we were out the door. We walked into the lab. It wasn't just kind of crowded, it was packed. There weren't even 2 available chairs for us.

I started out very apologetic and kind. I told the young receptionist gal that we were there for C and that she's type 1 diabetic. I said I wasn't quite sure how long we would be able to wait without eating. And if it's too long and she goes low then we would have to come back. And we are running out of time because her endo appointment is next week, and... You get the picture.

Well, she told me she would do her best but that she has to take people in order. I bit my tongue and walked over to stand next to all the occupied chairs.

Now, I would have classified myself as a fairly patient person B.D. (before diabetes). However, diabetes is never patient with us and it has rubbed off on me. I also would have classified myself as a mild-mannered person B.D. and B. C. (before children). This disease has forced me to step far away from my comfort zone many times.

So, about 30 minutes later, not surprisingly, C told me she was feeling low. Okay, we dropped to the floor and very publicly displayed her meter kit. We checked. Hmmm?...71. Not super low, but not good if we need to continue to wait. My patience and mild manners were beginning to fray. I walked back up to the counter with C's meter showing the number 71.

"Just wanted to know where we are in the line-up..." I said with a semi-smile. "She's 71 and if she goes lower, the fasting thing is out the window."

"Well, we have to get this other girl in before you. Her mother has been asking the same thing." The gal said. "Then we'll get your daughter in."

"Thank you, thank you!" I said.

I went back to C. I told her we'd be up really soon and that I would have this juice box ready for her. It wasn't 1 minute later and we were called. Phew, I thought.

We got her blood drawn with relatively few tears. She took a some sips of juice. I thanked the phlebotmist. I wanted to skedaddle right out of there as I felt the angry stares from those who were still waiting. But, just as we were heading for the door, the receptionist handed me a speciman cup. C also had to leave a sample. Ug.

I failed to remember this part and of course she didn't "have to go." So, instead of slipping out we had to sit there, drink water, juice, more water. It took several tries. Finally she was finished. We left.

I am grateful that we actually were treated with exception after showing the 71 on her meter. But then, when we had to wait, drink water, and wait some more, it was a little embarassing. I just wished I could have said to everyone in that waiting room "I'm sorry...I can wait...but my daughter's diabetes won't....thank you for letting us go ahead."

The "D" card. Do you play it? Maybe we should have just gone back another time.

12 Midnight & 3:00 AM

Okay, this is for all you type 1 parents out there, especially my mom friends who can so relate to me and this life we lead with diabetes in our families. I hope I can convey what I truly want to convey here.

When C was diagnosed back in December 2003, it was a whirlwind of education! We were handed a gigantic notebook full of diabetes information. And there is a page in it that haunted me for two years. It states: For a while, you will need to check your child's blood glucose at 12 midnight and 3:00 am.

That's what we did...actually more than that at times. I mean, our little girl was still a baby. She couldn't tell us how she was feeling or tap me on the shoulder at 4:00 am to tell me she has an unquenchable thirst and that she may be high. So, that was our assignment...do blood glucose checks every 2-3 hours, round the clock.

In the beginning, I tried to take on this new job by myself. After all, my husband had to get up and go to work! How can he be waking every few hours and still function properly on the job? But soon, it was clear that I needed help. We switched off for a while. Then we tried midnight for him and 3:00 for me. He would stay up, check at midnight and then go to bed. I would try to go to bed at a decent time and then get up for the second check. Nothing was really the perfect plan. And here's why: we need sleep! We, humans, need good, uninterrupted, restful sleep. It's precious. It keeps us healthy and alert. It allows our immune system to re-boot itself. It is so necessary.

When a child is diagnosed with type 1 diabetes, there is a demand on the parents to give up this precious thing. This thing that helps us stay strong and mindful for our children. It's quite a dichotomy. It's hard to wrestle. And what of the other kids in the family? During these first couple years, I was nowhere near the mother I wanted to be. I barely functioned. Coffee and Diet Coke became my lifelines. They would replace a lunch here, a breakfast there. I began ignoring my own nutrition as I grappled to understand carb-counting for C. I was a complete mess.

I am convinced that the medical teams that are there for us, will never tell us that it's okay not to check our kids over night. They need to cover themselves. And, I do understand that. But a full night's sleep? It was such an elusive thought for us those first 2 years. Our first endo, Dr. K, finally did say to me..."this is your child and you need to feel okay about not checking her through the night. But you also need to think about the quality of your life too. And getting enough sleep is a big part of that."

In the meantime, after 1 1/2 years of injections, C went onto the insulin pump. That was a whole other learning experience. It did make managing this disease "easier" in some respects. But C's numbers still baffled us. We still made adjustments and checked at midnight and 3:00 am. But then, something else entered our lives...

In June of 2005, two months after C had gone on the pump, I was diagnosed with breast cancer. Talk about stress! Needless to say, things had to change. I would be going through multiple surgeries, chemotherapy, reconstruction, doctor appointments, doctor appointments, and more doctor appointments. I knew I would not be able to keep up these overnight checks and take care of myself too. And...I needed to take care of myself. My kids needed me! This was the biggest wake-up call of my life.

Thank God, my friends and family were all over it. Two sisters and two dear friends went out to CHLA and got "all educated" on the pump, how to change the sites (and this was with the long catheters...no Quick-Sert), and how to care for C. She was only 3 1/2 at the time. There would be no preschool for her that year as we had planned. There would be countless doctor visits and staying with people other than mommy. These wonderful people scheduled time out of their own lives to spend the night on our couch and be available for those nightly checks. These would be on the nights when my chemo treatments hit the hardest. Sometimes, they would come after the kids were already in bed and slip out before they woke, leaving us notes with numbers scribbled down and bolus corrections or lows noted.

There's far too much to share, in regards to my own story here. But for now, I want to focus on the issue of sleep. I know, all too well, what the lack thereof can do to a parent. I, by no means, think that the insufficient sleep or the stress diabetes caused my cancer. But it certainly didn't help and may have even sped up the process.

After the surgeries and the chemo and more surgeries...and after I started to slowly feel stronger (and my hair started to grow again!), I knew I needed to let go of these nightly checks. I wrestled with it. I prayed. Dan and I talked about it. It was time. It was time for us to release this from our hands.

Now...we are Christians. And I have a deep faith in God. But I always hesitate sharing this on the blog because, well, I just don't want it to turn people off. But that faith is so key in the release that occurred. I must share that fact. I know God loves C even more than I do. I know that He intervened when C was close to comatose at diagnosis. And, so, I place my trust in Him each night. It's not easy, but I do it. And this is not to say I don't worry anymore. I do. I wake up with an anxiety that is difficult to explain to people who don't live with this disease. And when my body wakes at 4:00 am with a sudden panic, I may still creep down our hallway and do a quick check.

My 3 inspirations.

I just know that I want to be around to raise my kids. Therefore, I must take care of myself. And allowing myself to sleep through the night is where I choose to start.

We still check her periodically in the middle of the night. When we get ready for bed and she's super high or low, of course we set the alarm and check again. When illness hits, of course, we check her every hour if need be. But on a nightly basis, we've released it.

The Cat in the Hat Dilemma

So C tried out for Seussical the Musical last week. Even though all the kids make it, it was still exciting for them to be given the packet for each part (even if the part was simply the chorus!) Wednesday night C was given the part of "Jungle Citizen." I don't know. I've never seen the show. I suppose she'll be a citizen of the Jungle of Nool?!

Parents were given a schedule of practices and performances. In an earlier church bulletin, we had read that the performance would be some time in late September. I thought, okay, that'll work. It will give C something to be participate in, through the summertime...cool! She had performed in the last Christmas show the previous year. Honestly, it was stressful. Bunches of late-night rehearsals on school nights right before break. It's a wonder we all didn't get sick! Needless to say, I already knew we would be passing on the Christmas show for this year.

Well, I was shocked when I read the schedule. It showed that this was actually going to be the Christmas show on December 22 and 23! 5 months of rehearsals...another crazy, chaotic Christmas time?? They had changed their minds on the performance dates as the script and songs are quite difficult and didn't think it could be done by September...Trouble is...we, parents weren't notified. Hmmm? What to do???

Now, you might be thinking, "just let her do it...What's the big deal?" I guess this is where I need some sound advice. Maybe I am being selfish about it all. No...I know I am. I will need to be at every rehearsal. It will not be possible for the sweet show director to take in all of the diabetes issues and be responsible for C to test and ward off any lows. I can't expect her to clue into the seriousness of diabetes when she has 50 other kids to direct. So, of course, I would be there...every time. But then comes people's assumptions that while I'm there, couldn't I just help out with costumes or snacks or sets or miss all the performances and supervise all the out-of-control children while they wait to go on stage? And on...and on...and on. It is difficult, at best, to explain the true reason I'm always there! Gosh, this does sound selfish! It's for my daughter's well-being! And, it never fails, that while I get caught up in "helping," I lose focus on C. On her numbers. Then, we're dealing with an unexpected low or forgetting to test before she's on stage or something else important. Ug!

As I look at this post, it's a mess...sorry! But I'm really needing some other type 1 parents to lend me some sanity here. Any thoughts? Even if you think, "just suck it up and do it!"...I want to hear from you.