A dirty little secret

Got your attention with the title, didn't I?  Everyone loves salacious information and gossip, no matter how much they tell you that they don't!  But honestly, this post is not headed in that direction.  This is another one of those topics that I've been thinking about for quite some time and have noticed that very few people talk about this area of having a child with a chronic illness, like diabetes.  Or any other prolonged illness, for that matter.  So, here it is...the dirty little secret....

Chronic illness of a child takes a huge toll on your marriage.

Seriously, it can be so incredibly hard.  My husband and I were still recovering from the trauma of having a second child.  Leo was born in January and I felt like it took a good 6 months for us to recover and get back to something that resembled normal, whatever that might be.  Just as we were finding a new groove and figuring out how to make time for each other in between caring for the two beasties, Lily got sick.  I'll have to share the story one of these days of how she was diagnosed.  Probably not quite the typical scenario for diagnosis.  It threw me for quite a loop, to be honest.  I've been diabetic for so long myself, but the chances of one of my children being diagnosed was supposedly only 5%.  In those early days after a child is diagnosed, you go through so much and are so focused on taking care of your child and trying to deal with your own shock, anger, and denial, that it's easy to overlook the fact that your spouse is going through the same things.  You get so caught up in just getting through the day that it can be easy to lose sight of each other.  It's so ironic.  In times when we should turn to each other and lean on each other the most, we forget that we have that other person to give us support and to support in return.

In the hopes of at least letting other families out there with similar situations know that they are not alone, I'm going to open up a bit about our specific problems.  One of the most frustrating things about diabetes as you get older is that it often goes hand-in-hand with depression.  No one knows why.  I have my theories.  Considering how much extra stress and strain can be added into our dailies lives by blood glucose checks and insulin dosing and weighing every bit of food you eat, is no wonder diabetics become depressed.  I've dealt with chronic depression most of my adult life.  After giving birth each time, I was left with a pretty severe case of postpartum depression.  It took quite a while to find the right medication for me.  My husband has always had a problem with anxiety.  He uses his anxiety as a motivating force and it drives him to strive for perfection.  As our marriage counselor says, put the two together and it's like adding gas to the flames.  Jump ahead in our lives to post-diagnosis.  Many of you with very small children with diabetes realize just how hard it is to keep those numbers in check.  I'm a stay-home mom.  It's my job to keep Lily's numbers where they should be during the day.  My husband would come home from work, look at the logbook and see how badly her blood sugars jumped around and would get upset with me for not doing my job.  It took him a little while to realize that things just weren't that cut-and-dried.  So, we started seeing a marriage counselor.  I can honestly tell you....it is the best decision we have made!  We've both become more aware of how we choose to react to things, what our own weaknesses and short-comings are and how all of those things can affect the other.  Amazing what a difference actually listening to each other and looking at our own part in issues can make!

So there's my dirty little secret for tonight.  My husband and I have not dealt well with Lily's diagnosis in the past and have sought counseling in order to help us learn how to work together.  Things aren't perfect, by any means.  But they're better and we're both happier.  We've figured out how to keep our love and devotion to each other at the front and that has made all the difference!

It's all in the timing!

I think I might have finally recovered from our latest road trip.  We had a great visit with my family.  It's so much fun to bring our kids to the big family functions.  My family is HUGE!  Seriously.  I think I've mentioned before that I have 6 siblings.  Between those siblings, there are also 16 nieces and nephews.  It's amazing how 2 people can become that many more after 50 years!  One of the best things about being around my family is that there's always someone to play with, someone to watch, someone to hug, someone to listen, someone to talk.  Incredible and so comforting!  Lily and Leo both enjoyed having so many playmates to occupy them and it was great for Lily to see her aunties testing and programming into their insulin pumps as well. 

It took me a few days to get around to writing this post simply because I was so touched by the responses to my last.  I see my husband dealing with everything and yet it still escapes me how frustrating it would be to not know what our daughter is feeling when her blood sugars are off.  Your responses made me choke up and shed a few tears.  When Lily was first diagnosed, I searched and searched for a book that talks about all the unique problems and situations that come up when you have a pint-sized (aka: toddler or preschooler) diabetic.  There was nothing.  Really.  I played around with the idea of writing a book about it myself, and it's still a thought that comes up every now and then.  But I'm not sure I'd know what else a parent would want to know!  Anyway, thank you so much for your comments!

On to tonight's topic...per request of Just Plain Me, I'm going to talk quick about road trip snacks.  To be honest with you, we don't do many road trips in the usual course of life.  We visit my family several times a year, which is a 5-hour drive.  For those trips, it's all about the timing.  A typical road trip day for us starts with a quick breakfast, followed by packing, loading the car, getting the kids dressed, and a morning snack.  Usually something fairly filling, like string cheese, nuts, milk...protein-based foods.  We always time our leaving after morning snack in the hopes that the kids will nap.  Leo almost always does, Lily very rarely.  There's a decent-sized town about halfway through our trip, where we stop for lunch.  Not many options, but we usually pick Arby's or McDonald's.  Back on the road for a couple more hours and we're there, usually before Lily calls for a snack.

Nothing ever goes exactly as you plan it though, right?  So, even though we don't snack in the car much, I do pack snacks.  You never know.  My children are both half fruit-bat, half-rabbit.  Car snacks for us are usually prepared, fresh fruit.  Gets a bit sticky sometimes, but I know my kids will eat them and they're healthy.  So, I rinse and core strawberries or pull grapes off the vine and pack them into Tupperware to bring with.  We usually stay in a hotel and will make sure we have a refrigerator available for storing the food and using it for snacks during our stay.  In addition to the fruit, I'll pack some trail mix, nuts, or string cheese.  Those individually packaged sticks of cheese come in handy on the road!  If your kids are old enough, peeled carrots work well too (Lily loves these, Leo is too young yet though!).  I just get the whole carrots and peel them myself.  They taste better!  Long answer short...sometimes you have to get creative.  Kids change everyday and what they love one day, they detest the next.  You just have to look at what they currently like and pick the choices that work best for you as far as convenience and carbohydrate-levels go.

One more quick tip for road trips.  I let Lily go barefoot in the car.  You wouldn't believe how much easier it is to turn around and poke a toe for a blood sugar check while the car is still in motion than to have to pull over and do it!  Don't worry, my husband drives and I do the checks!

On the eve...

Tonight is Lily's last night as a 2-year-old. She turns 3 at exactly 5:46 a.m. Oh, what a year it's been! We had a few good months pre-diabetes and finished off the year with finger-pricks, test strips, needles, injections, insulin vials, logbooks, and her new, pretty pink pump (or her "punk" as she calls it!). Birthdays take on a new meaning and your view of them changes so much when your child has diabetes. You start seeing all those little milestones and moments with insulin-goggles. That birthday cake will raise your child's blood sugar to the moon. The fun and games of the birthday party will cause a low and you'll have to wrestle your child into your lap and hold her still while you force juice into her before she can rejoin the fun of her own birthday party. It sucks sometimes. But....the truth is, we're all grateful to make it to another birthday. Lurking in the back of our minds is the fear that we'll fail at keeping our child safe from her own body. It may not be likely that we'll ever fail to that extent, but we can't rid ourselves of that fear. So, tonight, I'll get myself ready for bed before sneaking into my daughter's room with her meter to test one last time before I doze off until the next finger-prick. And tomorrow, I'll bring out the chocolate cake I baked for my little girl and the load of presents that I couldn't resist picking out for her when I thought about how she'll only be able to have a small piece of that birthday cake and her party fun will be interupted by frequent finger-pokes and insulin dosing. Somewhere in the middle of all the worrying and stress, I'll rejoice that I've brought my little girl to another birthday, happy and as healthy as a life with diabetes allows her to be. When it comes down to it, I wouldn't trade one moment with her!

Bedtime Lows

I have Type I Diabetes. I've been diabetic for decades. But this isn't about me. My beautiful, perfect, little girl was diagnosed with diabetes as well. At the incredibly young age of 27-months. It was incredibly heartbreaking, but that's another story for another day. Tonight, the story is about the awfulness of bedtime lows. I go in to test her blood sugar every night before I can go to sleep. More often than not, her blood sugar runs high. I'm okay with it being a bit high at night. It's a comfort to me because then I know she won't be hitting rock-bottom in the middle of the night. Her tiny little body is constantly going through major changes and her blood sugars often make me feel like we're on a neverending roller coaster ride. I hate, hate, hate the nights when her blood sugars are low when I test them at my bedtime. It means I have to wake her up from her peaceful slumber to get her to drink a bit of orange juice. All it takes to bring her blood sugars up is a little bit, but it's still a break in her sleep. And then I play the waiting game. I'm waiting right now. Fifteen minutes seems like a long time when you're waiting to retest your toddler's blood sugar. And if it hasn't come up enough, there's more juice, more waiting, and another finger-poke to do. It's all followed by a very restless night for us both. Her sleep has been disturbed. My sleep will be disturbed. I'll spend the night waking up, off and on, imagining every creak of the floor, every sigh, every little noise is her, questioning if she's low again or if her little body has kicked in and used her stored resources to send her blood sugar soaring among the stars. Oh, the life of a mom with a diabetic child! It's one of constant worries, constant second-guessing, questioning if you're doing a good enough job, and trying to repress that little part of you that wants to panic and think about all the scary possibilities life with diabetes has in store for your child and you.

The wait time is over. Off to poke another tiny little finger and hope for the best!