A Weekend Without Diabetes (sort of)

I left for the long weekend with my sister.  We headed north to our favorite place...to meet up with my parents and spend some concentrated time with them.  No kids.  No husbands.  No distractions.  Oh, and no diabetes.

My parents are getting older (aren't we all?) and we thought it would be perfect timing to meet with them and talk about things like their rental properties and how we can help out with them.  Two locations are vacant at this time.  They would be showing them to prospective tenants and we could learn.

I made sure the fridge was stocked, laundry done, meds picked up and reminders written down. 

I almost forgot but C reminded me to get a birthday present for one of her little friends on Thursday night.  C seemed to be the one in the family who had a busy weekend ahead.  She was excited to be meeting with her new softaball team on Saturday and going to a birthday party on Sunday. 

After making sure everyone was set for the weekend, we left.

I didn't worry...too much.  My husband is quite capable.  It was a pretty light weekend, activitiy-wise.  Kids were healthy.  C's numbers had been just fine.  And honestly, there was a piece of me, deep-down, that was ready for a little respite from diabetes.

Later that night, when we had settled in, I made my good-night call.  I threw each one a kiss through the phone.  I got on the phone with the husband.

"Okay hon...have a great time with the folks.  Everything's being taken care of here" he said.

"Thanks!  I will.  Love you..."

 "Oh, just to let you know," he said, "C has a bit of a fever.  Nothing terrible...100 point something."

 "What?"

 "And she's been complaining of a sore throat."

 Silence.

 "Hon?  Are you there?  She'll be fine.  I just gave her some Tylenol."

 Big sigh.  "I know," I said.  "But I wouldn't have left if I had known..."

 "I know.  But it'll be fine.  I'm glad you're there.  You needed to go."

 "Please watch her numbers..."

Really this was the first illness C has had this entire school year.  I couldn't believe it.  I felt my neck.  It was already in knots.  Had I wished he hadn't told me?  Yes.  Would I have gotten angry if he hadn't told me?  Yes.  Oh brother.

I kept my phone on that night.  I just hoped he'd check her through the night.  Sometimes those fever highs are relentless and need more aggessive correction.  We had been doing so well on her bg averages.  And her next endo appointment is in a few weeks.  Argh.

It was a sleepless night.  This was not what I had been secretly wanting.  That next morning, as I was sipping my coffee and enjoying the view of the bay, I decided something.  I was going to release this anxiety, Lord willing.  I figured why in the world should I feel this tense?  I'm here.  She's there.  Husband's got it covered.  I can't do a blasted thing about her illness right now except to pray, as always.

I looked over at my dear mom and dad.  They were genuinely thrilled that my sister and I were there.  I smiled at them.  All of a sudden, I realized my role that weekend was that of daughter.  Not mom.  Not nurse.  I let it go.

Now and then, throughout the weekend, I'd get a text:  243, corrected and resting...mild fever...not complaining...91,eating dry cereal...267, but coming down.  And so it went.  Things were fine.  The sad part was that C missed out on the fun that she had planned that weekend.  But by Monday when I returned home, she was feeling rested and much better.  So was I. 

A weekend without diabetes?  No.  Not really.  Not ever, really.

My favorite place.

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.