The truth from a diabetic's perspective...

Do you ever find yourself thinking as you go through your day "that would make a good blog topic"?  Seriously, there are so many thoughts that pop into my head during my day and I'll stop every now and then and think, "I should write about that in the blog".  And then the ideas just pile up and I don't get around to writing all of them down!  But this is one topic that I keep coming back to and I know I need to write it out.

I need to give a little background before I go into the real topic I'm writing on tonight.  I've been diabetic for 23 years.  I come from a family with 7 children, 5 from the first marriage and 2 from the second.  Three of us from the first group are diabetic.  Sucks, right?  It made things a bit rough.  My mom was a single-mom of 7 children, 3 diabetics, from the time I turned 13 on.  So, you do the math...a single income that would keep even a family of 4 below the poverty-line, stretched to provide for a family of 8, including 3 with chronic illnesses.  It doesn't make for the prettiest of pictures.  But you know what?  There were some good things about being diabetic!  Seriously!  It's because of being diabetic that I got to go to summer camp.  I met incredible people, who also had diabetes.  I developed friendships with people from all across Minnesota and Wisconsin.  I learned to sail and canoe and ride horseback.  I spent a week every summer doing incredible things with wonderful people.  I went on a 5-day sailing trip on Lake Superior.  Twice.  And learned to surf a canoe in the Flambeau River.  Those are amazing experiences and wonderful memories.  And to be honest with you....I'm not sure I'd be willing to trade those memories for a cure!  Don't get me wrong, life with diabetes can be hard and I'd love for them to find a cure now...but not every minute of growing up with diabetes was awful because of those experiences.  There were some pretty powerful moments that I wouldn't have gotten to have if it weren't for diabetes!

I'm sure it was a pain for my mom to watch three of her children grow up with diabetes.  Having a child with diabetes and one without, I know I'm always worried that the one without is going to end up diagnosed as well.  As a parent, I'm terrified of that and I grieved when my daughter was diagnosed.  I mourned the life I had envisioned for her, without diabetes.  But there was one bright, shining thought that consoled me.  At least my daughter would get to experience Camp Needlepoint.  I know, it may seem silly to think of that as a wonderful thing, but really, it is!  A camp for diabetics and the memories and friendships I made there and all I learned about myself and my disease...well, I give all of that credit for saving me from myself and for making my life what it was.  It kept me from raging at the disease. 

So...the reason I'm writing this now?  I want parents of diabetic children to realize that while diabetes can be truly awful sometimes, it's not the end of the world.  It's not the worst thing that can happen to our children.  It sucks and I hope they find a cure someday soon.  I want my daughter to not have to poke her fingers countless times, every day of her life.  I want her to sleep peacefully without ever worrying that she won't wake up.  But more than anything, I want my daughter to be inspired.  I want her to be amazed.  I want her to be happy.  And all of that is possible, with diabetes or without.  A camp for diabetics can play a very strong role in making those things happen.  If your child is diabetic, I urge you to look for a camp when your diabetic reaches an age where it would be appropriate.  I actually plan to take my daughter to visit the camp near us, every summer until she can board the bus and start attending day camp!

Search for a camp near you!

Lily's new "punk" pack!

Road trips...

Oh, the dreaded long drive with a small child!  And even worse when the child is a diabetic!  We took a trip to Omaha last weekend for a wedding.  I was not looking forward to it!  Six and a half hours of driving followed by two nights in a hotel, a pre-wedding BBQ, the wedding and reception, dance, and all wrapped up with second six and a half hour drive home.  With 2 small children.  Lily actually does pretty well on car rides.  We did the "smart" thing and picked up a portable DVD player to help keep her entertained during the long drive.  Wow, was that a lifesaver!  Now if her little brother would have dealt as well with the long drive!  Leo actually threw a fit when we put him in the car to go grocery shopping this morning.  I don't think he's recovered yet.  My teeny little 16-month-old peanut is pretty strong when he's protesting something passionately!

I have to make this kind of short tonight so I can head to bed and get some rest tonight, but I just wanted to share a few things I learned during our trip:

1.  A six-hour-plus drive with 2 diabetics does not equal fun!

2.  A hotel with a good pool is a necessity at the end of that 6+ hour drive!

3.  Regardless of whatever vending machines and snack options a hotel has to offer, it is always a good idea to keep your hotel room well-stocked with fruit, crackers, cookies, or whatever other snack your diabetic child is willing to gobble up when she's low.

4.  Words that would not normally come out of a parent's mouth frequently come out of a D-parent....."you have to finish your cake before you can go dance" and "well, at least finish the frosting".

5.  It may be no use to cry over spilled milk, but sometimes you just can't help yourself!  Especially when the "spilled milk" is really a half-full tube of test strips and you know each one of those tiny little strips floating in the puddle at your feet is worth $1!

6. Summer/sandal-season is a great time to take a road trip.  Those bare toes come in handy when it's time to check a blood sugar and you're flying down the interstate!

My eyelids are getting a bit heavy now, so I think I'll leave it at that for the moment.  One more blood sugar check and I can turn in for a few hours before getting up to check again.  Oh, how I love my life as a D-mom!  Really, I do!  I just wish it allowed for a little more sleep!

Oh, and a few pics of my monkeys shaking their booties at the reception:

Not the best pictures, but the kids are cute anyway!

Aren't they amazing?

I swear, my kids leave me speechless nearly everyday.  Their ability to cope, to take what life throws at them and to get back up and keep going without blinking an eye is just incredible.  I'm particularly amazed tonight with Lily.  Tonight was a pump night.  And also, my hubby's break-night.  Since it's so hard for us to find someone knowledgeable to watch the kids, we rarely get out together.  But we make a point of giving each other a good break at least once a week.  It makes a huge difference.  Back to my awe-inspiring story....bath night, pump site-change night.  We just started using a new infusion set from Medtronic called the mio.  LOVE THEM!  Seriously, they're cute, little colored sets with the insertion device attached to the set, so each one is disposable and no need to keep tracking down our insertion device.  Usually, my hubby changes Lily's infusion sites.  We both figure since I put in my own infusion sets, it's good for him to have the practice of putting in Lily's sets.  Practice makes him less nervous about it.  So, it was my first time using the new infusion set.  I pulled the set back to get it ready to put in, pushed the buttons to release and pulled the insertion device back....with the set still attached.  I thought it hadn't even gone in.  Pulled it back and repeated.  Same thing happened.  Set was still attached to the insertion device.  Looked at the device and realized that I'd forgotten to take the tape off!  No wonder the set wasn't staying in.  And here was my absolutely amazing, incredible little girl, getting poked three times total by the time I figured out what I was doing!  Not one peep out of her!  No owies, no crying, no throwing a fit and asking me not to poke her again!  Seriously, she's amazing!  She stood there, patiently waiting for me to figure out what I was doing and finally do it right.  She inspires me! 

Confessions....

I am a BAD DIABETIC!  Seriously.  I used to be so good at keeping everything under control (at least, that is once I got past my teenage rebellion stage).  When I was pregnant with my children, my A1Cs always ran in the 5-6 range.  It was great!  But since Lily was diagnosed, my own care has been pushed aside while I've concentrated on taking care of Lily's blood sugars.  The logically part of my brain knows that I need to be better at caring for myself because I need to be a good role model for Lily and because it's hard to be a good mommy when you're not feeling well.  So, I'm setting small goals for myself.  My goal this week, is to start testing at least 4 times a day.  And to make an appointment with the diabetes educator I used to see.  Small goals, which will hopefully lead to bigger goals.  Like adding in lots of exercise, eating better, testing even more, and just generally being in better health.  I've let myself fall into some horrible habits and comfort zones.  I'm a bigger girl.  I didn't used to be, but diabetes has a way of helping you pack on the pounds.  And, let's be honest, emotional eating hasn't helped either.  It's really a vicious cycle.  The more insulin you take, the more weight you seem to gain.  The more weight you gain, the more insulin you have to take.  Bad, bad, bad.  My ultimate goal is to decrease the amount of insulin I have to take, to lead a better lifestyle and to show my children how to lead a better lifestyle.  In order to be a good mommy to my diabetic daughter, I need to be a good diabetic. 

And just an added little note....I had every intention of participating in the Diabetes Blog Week.  And I still do.  Just a week late, I guess.  It's been a busy week with Lily's 3rd birthday and her party and whatever else life has been throwing at us.  I'll hopefully get a chance to start on those blog topics tomorrow!  For now, I'm going to pick up my crocheting (making a baby blanket for friends who are expecting in July), do a few rows and then head off to bed.  I need some rest!

When it's good, it's really good...

Today was one of those days.  One of the really great, blood sugars are rockin', kind of days for us.  They are so incredibly rare!  Our days are never in-between.  When they're good, they're really fantastically good.  When they're bad, they're kick-you-while-you're-down bad.  Lately, we've had too many of those bad days.  Lily had a 3-month visit with an endocrinologist on Friday.  Wasn't our usual endocrinologist, since she's booked 4 months in advance almost all the time and apparently, there's an influx of new patients that they've had to accommodate, which makes me incredibly sad.  I think from now on, we'll most likely stick with seeing a diabetes educator when her endo is busy.  We didn't like this one at all!  Lily is teeny, teeny tiny.  She is 3 years old and weighs just under 30 lbs.  She's gained 2 lbs since her visit 3 months ago.  The endo said we should be concerned about weight gain.  YIKES!  Now, I do have to give the endo some credit.  Lily's A1C was 9.8 this time.  Icky.  I don't like that number.  THAT concerns me!  So, the endo did have some reason to be concerned.  But I just didn't like her approach or philosophy on the whole thing.  One of the problems with blood sugars and infants/toddlers/preschoolers is that if you run their numbers too tightly, you can risk stunting their growth.  With a child as small as Lily, this is definitely a concern!  So, as her parents, we try to keep her A1C in the 8-9 range.  That's comfortable for us and for her regular endo.  This endo wants it to "ideally be under 8".  In an ideal world, my daughter wouldn't be diabetic.  Since this isn't an ideal world, we're going to shoot for under 9 and be happy with that!

One more thing before I head off to bed to sleep my fitful, frequently-interupted sleep...kind of touches back on that A1C number and the bad days issue.  I've been letting myself get very frustrated lately when I can't get Lily's blood sugars where they should be.  It's a problem.  I get tense and irritable.  I freak-out a little bit.  It's very hard to make peace with the idea that I don't get to be in total control of all of this and that things are going to happen sometimes that I don't want to happen.  I have to keep reminding myself that my main occupation is not to be the "keeper of Lily's blood sugars".  It's so easy to let myself get caught up in that part of our lives since it's such a big part and we have to be in constant awareness of it.  But, ultimately, I need to remind myself that I'm her mom first and if I let myself go down that path too far, I take the "mom" out of the equation.  So....for all your other d-moms out there, a gentle reminder to not lose the "mommy" in the middle of the fingerpokes and injections.  Take a few minutes out of your diabetes routine every now and then to kiss your children and give them a big squeeze!

Off to test Lily one last time before my head can hit the pillow!

Happy Birthday, Lily!

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!