A Year in Pictures

Tomorrow is Lily's one year Dia-Birthday.  I'm feeling a bit sad and reflective tonight.  It's been quite a year.  Rather than spending my time writing a post that I don't really feel like writing (I'm just not feeling like talking tonight), I thought I'd share with all of you some pictures from the past year.  I've been looking at them and wondering if other people see the things in them that I do.  So, the year in pictures:

Lily, one month before diagnosis

Two weeks before diagnosis

Lily, the day of diagnosis

Lily, two weeks after diagnosis

Lily, two months after

Lily, three months after

Lily, one year later

What a difference a year makes!  As much as I wish Lily weren't diabetic and that she didn't have to deal with this for the rest of her life, I wouldn't trade her for the world.  To me, she's perfect just as she is and I thank God every day that I was given such a precious, wonderful gift!

A quickie or two

I need to get some sleep tonight, so I can't do a long blog.  But I have some thoughts on my mind.  Excuse me if the topics jump around a bit, but I know I won't sleep if I don't clear them from my head first!

You know what having a diabetic preschooler is like?  It's like playing a game with someone who constantly changes the rules of the game.  It seriously drives me nuts some days!  Lily was doing great for a while.  We figured out that at night, when we give her a correction, we need to back off from what the Bolus Wizard tells us to give her or she'd crash.  That went on for a good month.  And then, all of a sudden, it wasn't working anymore.  She was skyrocketing all night long.  So we went to giving her the full correction.  She still woke up high.  A few weeks of getting up every couple of hours to correct her.  And now we're back to backing off of the correction during the night and she's waking up in the normal range in the morning.  Oh, how I wish we could have just a month or two where things would go just right and she'd feel fantastic and not be on the constant roller-coaster ride that is the pattern for a pint-sized diabetic's blood sugars!

20 questions....do you ever play this game with your children?  I read a blog earlier today, and I can't even remember the blog's name or anything, but it seriously worried me.  As a diabetic myself, I know I can be a bit touchy about things.  The person writing the blog was complaining about not getting enough communication from her child.  Asking the pre-teen child questions and getting the "I don't know" or mumbled answer that a child that age would typically give.  It brought back some rough memories for me.  And I just wanted to take a moment to say to all the other d-moms out there....please, please, please try to resist the urge to play this game with your child over his or her blood sugars!  "You're high? Well, how come? Did you eat something you shouldn't have?  Did you forget to take your insulin earlier?"  Etc, etc, etc.  You know how that all goes.  You analyze everything, every move, every morsel of food, everything!  As hard as it is, try to accept high blood sugars as a fact of life at times, correct them and move on.  Seriously.  As your kids get older, they will learn the consequences of their actions so much better than you could ever imagine.  But playing 20 Questions over why their blood sugars are the way they are at the pre-teen/teen stages will just make them more combative and angrier than they already are.  It's a natural state of mind at those ages, no need to add to it, right?

My last thought for the day....it's getting to be that time of year again.  The back-to-school sales are being plastered everywhere you look, summer is starting to wind down, and parents are getting ready to return to the same old school routine that they take so much comfort in.  My children aren't school-aged yet, but it still has me thinking....you know what they need to come up with next for diabetic children and their moms?  I want them to add a feature on to one of these Continuous Blood Glucose Meters.  They need to figure out a way for these meters to magically beam the numbers off to mom or dad, no matter where they may be.  How fantastic would that be?  Anytime you're worried about your child at school and what his or her BGs might be at the moment, you can just look at a little screen and it'll tell you what the BG is at the moment and if it's going up or down.  It'd be fantastic!  Maybe they can work on that before I have to send Lily off to school.  I'd say they should come up with an app for the iPhone, but I don't have an iPhone.  Still, it'd be a great feature, wouldn't it?

Oh, one last little thing.  I got the best thing in the mail today.  A thank you card from Sue.  She's the one I sent the lilac colored scarf with the flowers off to.  It made me so happy to hear that she enjoyed the scarf and was looking forward to wearing it!  Thank you cards are awesome, and so rarely used now!  Really, they're one of those things that we should all work on bringing back!

Okay, off to bed!  May you all have wonderfully peaceful, beautiful dreams and a full 8-hours of sleep!

Even worse than pity...

Your comments got me thinking about all the things that people have said to me over the years when they find out that I'm diabetic or that Lily is diabetic.  Oh, people can be so uninformed and scary sometimes!  Their comments can really leave you speechless and feeling like a freak sometimes.  So I thought I'd share with you my absolute favorite comment that I hear so often:

You have to give yourself/your child shots?  Oh my gosh, I could NEVER do that!

Seriously, this is my absolute favorite comment.  I love hearing it because it makes me laugh every darn time.  I swear, people just don't think before their comments fly right out of their mouths.  Do they imagine that I've never been afraid of needles?  That my child isn't afraid of needles?  That she's never cried, run the other way, screamed that she didn't want to be poked?   I remember one particular incident with Lily, the day after she was diagnosed.  She was in the hospital still and they'd been using her toes for her blood sugar checks.  Toddler fingers are so incredibly tiny!  One of the nurses that we really liked walked into our room, smile on her face, greeted us and then turned to greet Lily, while reaching down to tickle Lily's foot.  Oh my, I'm sure her scream was heard several floors above and below us!

So here's why I love this comment in particular...until you experience this for yourself, you have no concept of what you could and will do to make sure your child stays safe and healthy, to make sure you stay safe and healthy.  I've had some rough times in the past (I'll share them with you someday soon) and I can guarantee you, even someone who is deathly afraid of needles will pick one up and jab it into their own flesh or the flesh of their child when faced with the choice between that needle or death.  Death by diabetes is not something anyone would want.  And honestly, from my own experiences with it, I can tell you that it's not something you'd even wish on the worst person you know!  Long before a person got to that point, they'd pick up that needle.  When it comes down to it, we face our fears, the worst of our fears, in order to achieve survival for ourselves and our children.  It's amazing how we willingly do what we never thought we could when we're given such a choice!

Off to test Lily one last time before I turn in for the night!

Don't pity me!

Do you ever find yourself sharing the fact that your child is diabetic randomly with strangers?  I do this all the time.  Their response is nearly always the same...."Oh, I'm so sorry."  "How awful for you."  Seriously?  I shared a video on here a while back called "Faces of Diabetes".  I didn't comment on it at the time because I felt I needed some time to reflect on it and my reaction to it first.  It made me angry.  The pitying comments, the "so sorry", the portrayal of a life with diabetes being a tragedy with only grim circumstances at the end of that life.  It makes me so angry!  I have never once considered my life as being less valuable because of my diabetes.  I have never wanted anyone to feel sorry for me for it.  Or to feel sorry for me because my child has it.  I don't want your pity!

So why do I tell strangers I don't even know that my daughter is diabetic?  I want them to know just how incredible she is.  I want them to look at her in awe for how happy and healthy and amazing she is.  Lily deals with so much throughout her day.  Every day.  Diabetes doesn't give her or me a break.  We deal with highs, lows, finger pokes, running to the bathroom when we're high, guzzling water, downing fruit snacks while we're starving to death, and everything else this disease throws at us.  And we do it all while smiling, laughing, running, playing, LIVING!  I want people to understand that while diabetes is difficult and a cure is so incredibly needed, the people who deal with the disease are amazing individuals.  Incredible, worthwhile, strong people.  They are not just diabetics.  They are mothers, fathers, daughters, sons...people who matter.  I want them to know that my life is not a tragedy.  My daughter's life is not a tragedy.  Yes, we deal with difficulties and if we don't take care of ourselves, there are very grim consequences.  But our lives are beautiful and should be admired, not pitied!

Christmas in July!

I think I might be safe posting these now.  I know Sue at least has received her gift.  And I'm pretty sure Michelle isn't following my blog.  I'm hoping she received her gift already too, but she lives in Australia, so that's kind of iffy.  So here's the story....

I love doing free-form crochet.  I feel like the yarn has ideas of it's own on how it would like to end up.  Both of the people I was gifting to in the Christmas in July exchange lived in much warmer climates than I do.  Minnesota really doesn't get anywhere near 100 degrees most of the time and the majority of our year is spent in jeans and long-sleeves because of the chill factor.  Don't get me wrong, we do get some heat in the summer, just not anything near what people closer to the equator deal with.  So...for the first gift, I started with the idea of turning a fingering-weight, baby alpaca yarn into something lacy.  The yarn had a different idea:

The yarn decided it wanted to be a lovely, ribbed scarf with a shell ruffle on each end.  I added in some tiny flowers with silk yarn and leaves in a cotton microfiber crochet thread.  I know it's not really a practical thing, especially considering that I was sending it off to southern California.  But it's so much more fun to receive something totally impractical and maybe it will come in handy once the seasons turn and the colder seasons start to hit.

The second scarf actually went along with what I originally intended for it.  I had a fabulous, thrifty find from a local yarn store: a skein of Araucania Ulmo yarn.  Pure cotton in a deep burgundy color that showed stitches perfectly.  I decided that I'd do a spiral scarf with the yarn and then added on an edging with a pink/cream/white variegated silk yarn:

I'm so happy with how they both turned out!  I hated having to send them out so late (they should have been postmarked June 30 and I didn't get them out until July 20!), but I really hope I made them worth the wait.  I have a rule for craft exchanges...I refuse to gift something to someone that I'm not horribly tempted to keep for myself!  I just can't do it.  If it's not up to par with something that I would want to own, then it's not worth sending out!

Okay, I'm off to test Lily's blood sugar again and then maybe get in a little more work on the spiral baby blanket I'm working on for a friend.  She's due with a baby girl in just a couple of weeks and I'm hoping to get the blanket done before baby arrives!  Oh, one more picture to share before I go, just because these are the two creations I'm most proud of:

Diagnosis is just the beginning....

I feel like there's so much more to our diagnosis story than what I've already written.  Realizing that something was wrong and identifying what that something was doesn't even begin to tell the story.  And it's probably not even the most important part of the story.  So, here we go...the rest of the story:

Lily was admitted to her room after 10:00 at night on August 10th.  Poor Leo was exhausted by that point.  Luckily, he was still mostly just breastfeeding, so at least he hadn't gone hungry!  I walked up to Lily's room with my husband and Lily and had to immediately head back down to our car with Leo.  Leaving Lily there was one of the absolute hardest things I've ever had to do!  For practicality, I knew my husband had to be the one to stay with her.  But the mom side of me felt like she needed me more.  Or maybe it was just the fear of falling to pieces that made me want to be the one to stay.  I knew that as long as I was there with Lily, I couldn't afford to let myself shatter into a million pieces.  I had to hold it together.  The hospital Lily was admitted to was a good 25 minute drive from home.  To be completely honest, I probably shouldn't have been driving that night.  Imagine this....10:15 at night, it's pitch black, middle of Minnesota's "other season" (road construction), I have a 7-month-old child asleep in the backseat, and I'm sobbing my heart out as I drive past my exit.  Not the best situation.  But I made it home safely, put Leo to bed, and then sat there, unable to sleep and still crying.  I think I finally managed to cry myself to sleep at some point, just a few hours before having to return to the hospital for the education sessions that they give parents of newly diagnosed children.  Those poor educators and doctors!  I don't think they quite knew what to do with us.  How do you educate a parent of a diabetic who has had diabetes for more than 20 years herself?  I tried to encourage them as much as I could to do as they normally would.  I may have been diabetic for a long time, but for my husband, it was quite different to go from being the spouse of a diabetic to the parent of a diabetic.

For us, the hospital stay was probably the worst part.  We were at Children's Hospital in St. Paul.  An excellent hospital.  But there was one major problem.  The protocols for how to deal with a diabetic patient don't take into consideration the differences between a toddler and a school-aged child.  We had some major issues.  As most parents know, toddlers eat.  Often.  Their little tummies don't hold much and Lily was still in the 2-hour eating pattern.  Every two hours, she wanted something to eat.  She was hungry.  The nurses would only give her low-carb foods.  And they'd often forget to bring her a snack altogether.  At one point during our two-day stay, Lily was so hungry and frustrated about not getting anything to eat and not being able to communicate what she needed that she started banging her head on her hospital bed!  Would you believe that my heart breaks more over that than over her diagnosis?  The nurses did try as much as they could to accommodate Lily's needs, but sugar-free Popsicles and  meat and cheese trays were just not cutting it for Lily.  Luckily, her stay only lasted two nights and on the second day, we were able to take her home, after a quick (or, not-so-quick) stop at the pharmacy.

Now THAT is where the story really starts.  Bringing home a diabetic child invokes nearly the same emotions as bringing home a newborn.  The fear and anxiety over doing something wrong, of forgetting key concerns, of failing to adequately care for your child.  It all comes rushing back when they give you all these new rules for providing for that child.  In an ideal world, we would be able to follow every instruction that the doctors gave us.  We'd be able to care for our child perfectly, controlling their blood sugars to make it possible for them to feel as normal as they are able to.  We'd be able to feed them the snacks we were told to feed them, balanced and nutritious meals that are prepared with love and care to give the best balance for their little diabetic bodies.  But this isn't a perfect world and what you wish your child would eat is not always what your child wants to eat.  My husband really tried hard to offer Lily all low-carb snacks.  Lunch meat, cheese slices, carrots.  We quickly discovered that when your diabetic weighs less that 30 lbs, there is no such thing as a "free-food".  Even four grams of carbohydrates would shoot Lily's blood sugars to the moon.  And she quickly got burnt out on meat and cheese.  She wanted fresh fruit.  Every time she ate, we would have to give her an injection.  Which meant we also had to make sure that every time she ate, she consumed at least 20 grams of carbohydrates.  If we didn't give her insulin, she'd be horribly high.  If she didn't eat enough carbohydrates, she'd go low.  And really, no matter what we did, her blood sugars never fell where we thought they should.  It drove us nuts and the stress of it started to take a real toll.  We got snappy with each other.  We became sleep-deprived, stressed, unhappy.  None of that was Lily's fault and none of it was because of her diabetes.  We both had some serious coping-flaws and needed help figuring out what to do with our new reality.

Is it awful of me to say "to be continued" at this point?  It's getting late and I need to get some sleep.  But I do plan to return and tell more of the story.  It's cathartic to get it all out!  To anyone out there reading, thanks for sticking with it!  I hope I'm not boring anyone to tears!

Avoidance...

Dear Blog,
I've been avoiding you.  We're coming up on Lily's one-year anniversary of being diagnosed and I know I need to write down the story of that awful day.  But I don't want to think about it.  I don't want to relive it.  So I'm avoiding you and putting off the inevitable.  Now that I'm done with my Christmas in July craft exchange gifts (which I will post pictures of later!), I have no more excuses for avoiding you.  So...here I am, to recount and relive the events that brought my world crashing down around me.

These are pictures of Lily.  I took them around 2:30 p.m. on August 10, 2009.  I remember thinking just how adorable it was that she'd fallen asleep in her Elmo chair while watching a show.  She'd given up on napping and was very rare that she'd even randomly fall asleep.  And there I was, as her mommy who should have known better, thinking it was adorable and she must have just worn herself out, playing with friends at a play-date that morning.  I thought nothing of it.  Until she woke up from nap around 3:15 and asked me for a juice box.  I'm not big on giving the kids juice, but I'd just recently bought some organic juice pouches by a brand called Honest Kids.  Lily hated them!  They were bland and flavorless, like severely-watered down juice.  But she woke up and asked for one anyway.  I handed one to her.  She sucked the entire thing down in about two minutes flat. She asked for a second juice box.  I gave her one.  Two minutes later, the box was empty and she wanted a third.  You know that feeling you get when you just know something is wrong?  In that heartbeat when you realize that the house you thought you'd built with bricks is actually constructed of playing cards and they're all falling down around you?  That was my moment.  My world crashed down.  I knew.  I didn't want to know, but I did.  Being diabetic myself, I pulled out my own meter and checked her blood sugar, hoping until the very last second that it would show me something other than what I was expecting.  Five seconds later, HI flashed on the screen.  I tested Lily twice more, hoping it was a fluke.  Maybe her fingers were sticky.  I tested with a toe.  HI.  Maybe she'd stepped in something sticky.  Third time would be the charm, right?  HI.  I picked up the phone, crying and nearly hysterical, and called my husband.  He was just getting ready to head home from work and I had to break the news to him over the phone.  I told him Lily's blood sugar was over 600 and I was getting the kids ready to head off to the ER.

My poor husband.  He's much calmer in bad situations than I am.  I freak out first, then take a breath and start dealing with the situation.  He deals and saves the freak-out for later.  He met us at the ER and we sat there, waiting to be called back.  I wish I'd had the presence of mind during all of that to think of just common sense things.  Lily hadn't eaten anything since lunch.  We didn't make it into a room until nearly 6:00.  Two hours in an Emergency Room waiting area is just too much for a 2-year-old girl.  Especially without anything to eat.  I kept getting her more water to drink (high blood sugars = excessive thirst).  But no food.  Four hours later and after being forwarded on to a new Emergency Room (our local hospital doesn't deal with pediatric diabetes, so we were sent to St. Paul's Children's Hospital), I finally had the presence of mind to ask the nurse for something for Lily to eat.  At 10:00 p.m., Lily was finally admitted into her own hospital room and we were able to get her settled in to sleep for the night.

I have many regrets over that day.  I wish I'd been calmer.  I wish I'd thought more about what Lily might be feeling, other than that she was sick.  I wish the day had never happened and that Lily was still the healthy, non-diabetic child I had wanted her to be.  I sobbed for two days straight, whenever I was alone, which was a lot since I was still breastfeeding a 7-month-old Leo and my husband was the one staying at the hospital with Lily.  I wish I'd been able to be the one to stay at the hospital with Lily.  So many wishes and all the wanting in the world won't make a single one of them come true.  But here's the thing....when life throws something like this at you, there are always other things happening around you that can help put your situation in perspective.  During the two days that Lily was in the hospital, I talked a lot with my family.  One of my sisters is a nurse in a rural area of Minnesota.  During a conversation with her, she mentioned a classmate of mine and the situation that his family was going through.  He had a daughter nearly the same age as Lily.  They'd received the news just a couple of weeks before that their little girl was very sick.  Leukemia.  Two weeks was all they got.  Two weeks with their beautiful little girl before having to say good-bye to her.  Perspective.  How horrendously heartbreaking it would be to go through that.  After hearing that, there was one thought that stuck in my mind.  I can deal with anything.  Diabetes is a challenge, especially when it's striking at your toddler.  But diabetes is life.  Diabetes is nothing compared with leukemia.  I can deal with this.  

Just one more thought to leave with everyone and anyone who happens across my blog...parenting is difficult. But, oh my, is it worth it!  Having a child will break your heart daily.  Shatter it into a million pieces.  And in the same heartbeat, it glues all those pieces back together in a new and more complex and amazing shape.  Glues it back together stronger than it was before.  Someone who doesn't have children yet can't imagine and there's no way of describing the bitter-sweetness that having a child adds to your life.  Someone who isn't a parent can't may look at the story of a family saying good-bye to a child and decide that the heartbreak wouldn't be worth it.  But those of you with children know that one minute with that child is worth so much more than a billion minutes without.  No parent would willingly choose to not have had their child, no matter how short of a time they have with them.

My brick house may be made with cards and may have crashed down around me, but it can be put back together again.  And the new house is so much bigger and better than before.