If You Can't Say Something Nice, I Might Punch You In the Throat

In three days, we'll have hit the two month mark in our T1 Diabetes journey.  Some things are easier and some things are harder.  As many of you know, Ryan travels a LOT for work.  But this weekend was the first time he's been gone since Tessa's diagnosis.  Normally, I don't mind the traveling.  In fact, there are many things that go much more smoothly when he's gone (no offense hun).  Unfortunately, managing Tessa's Diabetes at night is not one of them.  Ryan is a freaking CHAMP when it comes to night time diabetic care.  Me?  Not so much.  I don't handle those middle-of-the-night lows well.  Especially when I'm by myself.  There was one instance last night when I had my cell phone in one hand (911 already dialed), and my glucagon syringe in the other hand.  It's a good thing I never actually pressed send.  If the paramedics showed up at my house they most likely would have taken ME to the hospital, what with my crazy blood shot eyes and my hair that looked like I had just stuck my finger in an electrical socket.  This whole T1 Diabetes mess just seems more doable when Ryan is home.   I need someone there to reassure me that she's going to be okay.  Then I need someone to come back to bed with me to be sure I don't go into cardiac arrest.  What can I say, I'm a mom.  I might need to hire myself a husband to step in when he goes away from now on.  Any takers???   

The other thing that has been hard, surprisingly, is...people.  For the first few weeks we didn't really go anywhere.  We tested her blood sugar and injected her with insulin in the privacy of our own home.  But, you know, life had to go on.  I HAD to figure out how to do things.  Normal things.  Like go grocery shopping, go to the gym, and attend soccer games.  Suddenly I was faced with performing my diabetic duties with curious eyes looking over my shoulder.  Then came the first comment.

Now, I knew this would eventually happen.  I knew that at some point, somebody would be interested enough to say something or ask something or tell me a story about how their best friend's neighbor's cousin's mom lost her legs because of diabetes.  I hoped nobody would be brainless enough to say something like that, but alas, brainless-ness is more common than I thought.  I've heard more awful stories than I can even begin to count.  I've actually gotten used to hearing them.  Crazy how people don't seem to notice my other children's eyes growing wider and wider as they tell their morbid tales.  But what bothers me more, are the people who feel like they need to tell me what they think I did to cause my 2 year old to develop T1 Diabetes.  I know it's usually just a case of someone not knowing the difference between Type 1 Diabetes and Type 2 Diabetes.  But still, can we just not go there?  It's IMPOSSIBLE to cause someone (especially a 2 year old) to develop T1 Diabetes.  I've had people tell me that it's caused by not breast feeding long enough (um, 16 months was plenty long thankyouverymuch).  I've had people tell me that I must have given her dairy too soon (yeah, she STILL hasn't ever had cow's milk).  I've had people tell me that she probably ate too much sugar as a baby (I think she had her first piece of candy last Halloween - no kidding).  I know people mean well.  I get it.  I do.  What they don't understand is that I've gone through all of this in my head already.  Trust me.  I have already gone through every possible scenario that could reasonably place the blame on me.  Because that's what we do as parents.  We beat ourselves up over everything.  Even things that are out of our control.  I wish people would think that through before THEY blame me.  I've gotten good at smiling and nodding and saying, "that's an interesting theory."  But I'm afraid that one of these day's I'm going to lose my cool.  I'm not entirely sure what would happen if I did, but I apologize in advance if you are unlucky enough to witness it when I do.  Feel free to restrain me if necessary.  

All things considered, we're adjusting pretty well.  Tess actually handles it better than the rest of us do.  Kids are so resilient.  Sometimes I can't believe how unfazed she seems by the whole thing (I think unphased, but Webster's dictionary says unfazed).  I know she will have hard times and eventually she'll start to wonder why she has to have pokes and shots and other kids don't.  However, there's a weird kind of comfort that comes from knowing that she'll never remember what life was like before she developed T1 Diabetes.  I know it sounds sad.  Pathetic actually.  But it's the truth.

Lottie Awesome-ness

The dude who is training our doggy sent us this video of her.  She's marking and alerting to Tessa's ketone samples (in the tins).   Tess reminds us every day that "Lottie is at doggie school."   We CANT. FREAKING. WAIT. to get her back.  

And for the record, it's Lottie.  Not Dottie.  But apparently she responds to whatever you call her.  

   

And I Thought My Life Was Boring...

Hey, remember that one time when I wrote a blog post about how my life was so uneventful that I had nothing to blog about?  And remember how in that same post I went on to tell you that because of the uneventful nature of the 5 previous months, we had gone out and purchased an English Golden Retriever puppy?  I have read and re-read that post so many times over the past few weeks, and I still can't get over the irony of it. I've always hated the phrase, everything happens for a reason, and for the record, I don't actually believe it.  But sometimes, every once in a while, I think there's an element of truth to those words.

December 12, 2013 is a day that will be etched in my memory for the rest of my life.  In fact, even now, I have a hard time finding words to describe what happened.  Suffice it to say, that my entire life changed that day.  My 2 year old little girl Tessa (or Peanut Baby as I refer to her on this blog) was admitted to the hospital and diagnosed with Type 1 Diabetes.  My husband and I only had an hour or so to grieve before we had to pull our crap together and start learning the nuts and bolts of glucose testing, carb counting, drawing insulin, and giving injections.  Little did we know, that it was just the beginning.  The next 48 hours were jam packed with lesson after lesson about how to care for our new little diabetic.  We listened and took notes and tried our best to get a grip on the situation.  And in between all those things, we cried.  We were heartbroken for our little girl who would never have a "normal" life (they tell you that diabetics can live a normal life, but when you really think about it you realize it's not entirely possible).  But in all honesty, I was maybe even more heartbroken for myself and my "un-eventful" life that had just been thrown into a tailspin.  Hey, at least the level of excitement had picked up a bit.  Just goes to show, be careful what you wish for.

The experience of being in the hospital with my sick child is something I hope I never have to repeat.  Ever.  But I have to say, the doctors and nurses at Primary Children's Hospital are absolutely the best of the best.  And to top it all off, the doctor she ended up being assigned to just so happened to be the pediatrician who cared for me as a child (he has since gone into pediatric endocrinology and is one of the best specialists around).  The first thing he said to me when he walked into our room was, "you probably think your life is over, but I assure you it is not."  Very wise words indeed.  He's a keeper for sure.

giving Rufus a shot - he's a very good patient

the tray of life that sits atop my kitchen counter...in front of the toaster oven

Tessa was diagnosed almost exactly 4 weeks ago.  I'm pretty sure I cried every day for the first 2 weeks.  I cried every other day for about a week after that.  I can honestly say that I'm in a much better state of mind at this point.  I mean, I have my moments, but they are few and they are brief.  I realize that our lives will never be the same, but I also know that good things can come from this challenge we're suddenly faced with.  Actually, good things have come already.  More on that in a minute.  First I want to tell you about the symptoms of Type 1 Diabetes.  Not because I think I'm a smarty-pants, but because I wish I would have known the warning signs before we were sitting in the hospital with our baby being told that her blood sugar was over 500.  It would have saved her several weeks of suffering.  

When she was first diagnosed and I started trying to put the puzzle pieces together, my initial thought was that she had only been showing symptoms for a week or two.  But over time I've realized that she had actually been symptomatic for several months prior to her diagnosis.  Yes.  Months (yikes, I know).

*3 months prior to diagnosis - I noticed strange changes in her personality and behavior (whiny, clingy, tired though not lethargic, fearful of things she had never feared before, she also stopped picking up new words and even seemed to regress in her speaking ability).  At the time I chalked it up to her going through an evil phase or something, but in hindsight I can see that these changes began slowly and became more obvious over the months that followed.  I distinctly remember about a week before Halloween wondering if maybe these were the early symptoms of autism, and thinking that we should probably have her evaluated. 

*2 months prior to diagnosis - strange behaviors continued and she also started crying.  CONSTANTLY.  Not just regular toddler crying.  It was this weird type of crying where I knew something was wrong but I didn't want to take her to the doctor and say, "um, she cries a lot."  Hello.  She's 2!  She also started having suuuuuuuper wet diapers.  Not all the time but frequently enough that I noticed it.  

*1 month prior to diagnosis - all the stuff I mentioned above multiplied by 10.  She was unbearable.  I would go to sleep every night saying to Ryan, "I can't do this again tomorrow.  I just CAN'T do it."  And then???  She stopped sleeping through the night.  Just all of a sudden.  She would wake up crying several times every single night from then on.  I was worried I guess.  But still, nothing really seemed physically wrong.  So I just figured it was part of the "evil phase" she was going through.  She continued to have unusually wet diapers, but I also noticed that she seemed thirsty a lot.  Again, not all the time.  But every few days I was astounded at how much she could drink.  I just figured she was growing.  I also apparently have rocks in my head.

*2 weeks prior to diagnosis - Ryan and I had gone to California over Thanksgiving and left the kids home.  Because we are awesome parents.  The day before we got back my mom called and said that Tess had a weird rash on her torso that looked like giant polka-dots, to which I responded, "yeah, so (again with the awesome parent thing)."  My mom said that she didn't seem sick and didn't have a fever so I really wasn't all that concerned.  I figured it would go away on it's own (and it did eventually).  The morning after we got home, I got Tessa undressed to put her in the tub and I suddenly realized that she had lost a lot of weight since we left on our trip.  I mean, a LOT of weight.  Which was scary for a kid who really didn't have much weight to lose to begin with.  She was also peeing so much that I needed a wheelbarrow to get her diapers to the garbage can.  She was begging for drinks all day long still, and seemed unusually hungry.  I figured that she probably had some freaky virus that was just working it's way out of her system.  But at least she was eating like a bear.  Phew!  Certainly she was on the mend, right?  

*1 week prior to diagnosis - Strangely, for a few days her "symptoms" (I didn't know they were actually symptoms of anything) seemed to lessen.  I really thought she was fine.  Her rash had gone away and she never actually came down with anything else that would have pointed to a virus.  The only thing that stuck out to me was that she seemed very VERY tired.  When she wasn't eating (or crying), she was laying on the floor.  Strange for a 2 year old.

*3 days prior to diagnosis - Symptoms return, only now they seem exponentially worse than they did before.  We decide that if she doesn't seem better by the weekend, we'll take her in.

*day before diagnosis - I asked my little brother who's a 4th year medical student if any of this sounded serious.  We talked about a few possibilities (one of them being Diabetes), but decided that it didn't seem to fit, because really, she didn't necessarily seem sick, and kids with Diabetes are usually sick.  During our conversation he mentioned that when kids develop Diabetes and start to enter a state of Ketoacidosis (aka: what happens right before they slip into a diabetic coma), their breath will smell sweet.  I filed the info away but didn't think much of it.  She had an awful night that night.  She woke up SCREAMING for a drink of water at least 3 times.  I was absolutely stunned when she downed 3 full glasses each time she woke up.  Needless to say, she was peeing as much as she was drinking.  Duh.

*day of diagnosis (we didn't make it to the weekend) - After a long night we both decided that she needed to be checked out by the doctor.  Luckily they had an open appointment at 8:30.  I was still in my pajamas and apparently still in denial, so Ryan took her in without me.  As I was getting her ready to go I noticed something weird.  Her breath smelled like...candy.  I actually felt my heart stop beating for a split second.  I probably should have jumped in the car and gone with her to the doctor, but honestly, I think I was still clinging to the possibility that it wasn't anything serious.  Or maybe I was too scared to hear that it was.  I have tortured myself with guilt over the fact that I didn't go to that appointment with her.  I still can't explain my decision to not go.  But in the end, it might have been a blessing in disguise, because when our pediatrician called 30 minutes later to tell me that my baby had Type 1 Diabetes, I. Lost. It. Completely.  Ryan took her directly to Primary Children's Hospital.  I called my mom in a state of absolute panic knowing that she was the only one who could talk me off this ledge before I had to drive the 30 minutes to the hospital.  She delivered.  I pulled myself together and drove up to meet Ryan and Tessa.  I walked into the exam room and collapsed into Ryan's arms.  We had a good long cry.  We snuggled our sweet little girl knowing that she had no idea that her life was about to change dramatically.  We also knew that she would never remember life prior to her diagnosis.  It was sobering to say the least.  But then, it was time to get down to business.  

So.  Let me consolidate for you.  The symptoms of Type 1 Diabetes are:

-increased thirst

-increased urination 

-tiredness or lethargy

-increased appetite

-unexplained sudden weight loss

-behavior changes

-skin disturbances

-sweet smelling breath

Does this mean that if your kid starts to misbehave he probably has diabetes?  No.  Does it mean that if he seems tired for a few days he probably has diabetes?  No.  Does it mean that if he loses weight he probably has diabetes?  Nope.  Most kids have a very small chance of developing this disease and family history can tell you if your risk is significantly higher (there does seem to be a genetic component).  But even then, the chance is still small.  I'm only listing these symptoms here because I feel that parents should be aware.  Not obsessive.  Just aware.  I wish I had known more about the symptoms of Type 1 Diabetes. 

Okay.  So.  The dog that I didn't want to get last fall.  Turns out I'm insanely grateful that I was talked into it.  Why?  Well, for starters, she's AWESOME.  She chews the baseboards off my walls like nothing you've ever seen, but I can look past that.  In fact, as much as I'm not into the whole everything happens for a reason thing, I have to tell you that she definitely happened for a reason.  We were led to her in a way that I can't describe.  I knew from the moment I saw her that she was meant to be ours.  That feeling has never left me.  From day one, Ryan and I both agreed that there was more to our sudden urge to get a puppy than we could reasonably explain.  And now we know why.

Shortly after Tessa's diagnosis we learned about a fairly new tool that is being used to help people manage Type 1 Diabetes.  It's become especially useful for parents with a young child that's diagnosed with the disease.  This tool is called a Diabetic Alert Dog.  They are certified service dogs that are legally allowed to go ANYWHERE humans can go (planes, schools, grocery stores, restaurants).  They can detect significant changes in a diabetic human's blood glucose level.  They are trained to alert the person when they detect these changes.  That would be HUGE for people with diabetic babies or toddlers. Because not only can they not feel when their blood sugar goes too high or too low, they couldn't tell anyone if if they could feel it.  Tessa has had trouble with highs and lows (most diabetic toddlers do) and it's hard for us to recognize.  Often times we don't catch lows until she's literally seconds from passing out.  It's just really hard to detect fluctuations in little kids.  I spend most of my day in fear of her passing out or seizing while I'm not paying attention.  And night time?  Oh my heavens.  You can probably imagine what's it's like.  We spend every night on edge.  We know that it would only take minutes for her glucose levels to plummet.  That fear is crippling.  We take turns getting up to check her levels all night long.  You can see why a Diabetic Alert Dog is so appealing to us.    

Now, typically these dogs run about $15,000-$20,000, and no, insurance will not pay for one.  Not to mention that for every 10 people who apply to receive one of these amazing dogs, only 1 dog will be placed.  In other words, not gonna happen.  But there were a few things that got us thinking.  Things like the fact that Golden Retrievers are usually the best for the job.  Hey!  We have one of those.  And it's good to begin their training around 6 months.  Wait a minute, our puppy is 6 months!  But there are only a small handful of accredited organizations who can train Diabetic Alert Dogs throughout the country.  Crap!  Strangely, one of those organizations happens to be in Utah.  Holy smokes!  We live in Utah!  You can see where this is going, right?  We sent our beloved Lottie away for the next 2 months to be trained to be a Diabetic Alert Dog.  She left on Tuesday.  Our house feels empty and quiet.  And while my baseboards will most likely enjoy the break, we miss her so much it hurts.  2 months is going to be a long time.  But with any luck, when she gets back, we will have an invaluable tool that will help us keep our daughter safe.  She is going to be amazing.  I knew from the start that there was going to be something big in her future.  She's just...one of those dogs.

As crazy and unpredictable as life can get, sometimes things really do happen for a reason.  I don't know where this blog is going, but I do know that I finally have something worthwhile to blog about now.  Silver linings.

It's White and Fluffy and Has Already Eaten My Shoes...

I've had nothing to blog about for the past, oh, 5 months or so.  Seriously, no thoughts, no events, no babies, nothing.  It's just been regular boring life.  I'm cool with boring though.  Boring usually means something exciting is just around the corner.  To be perfectly honest, this isn't exactly the kind of "exciting" I had in mind, but you know what they say, life is short, so get a puppy.  Actually, now that I think about it, maybe it's just my husband who says that.

Meet Lottie, our baby polar bear English Cream Golden Retriever (her official "snooty" name is Lottie Snickerdoodle).

She spent the first few days at home like this...

And this...

And a few times I found her like this...

One afternoon, she decided that the sleeping routine was old.  The destruction of Peanut Baby's toys was a much better plan.

Add to that the dining room table.

Then she looked at us like this, and all her transgressions were forgiven.

I always knew that at some point we would get a dog.  Never in a million years did I think it would be a Golden Retriever (I'm a herding dog kind of gal).  But you know what?  I'm sold.  I love this breed.  I especially love the English version.  They're bigger and blockier and definitely much lighter in color than regular Goldens, but they are the sweetest, smartest, cuddliest dogs in the whole wide world.  I love that Lottie can't STAND to not be snuggled up next to me.  If I let my hand go limp, she'll remind me to keep petting her by nuzzling her head under my hand.  She has been such a perfect addition to our family.  I almost can't remember what my pre-Lottie life was like.  Although I do recall there being less poop.  Destiny?  Fate?  I don't know.  What I do know is that I adore this puppy way more than I thought I could.

I'm in love, I'm in love, and I don't care who knows it!!!

And in case you're wondering, the rest of my life is indeed still boring.  Which means you can probably guess what I'll be blogging about for the next little while.

On Motherhood

One of my dear friends sent me a link to this blog post a few days ago.  You'll either love it or hate it.  I loved it.

A Letter To Young Mothers

Dear Young Mothers Everywhere—

I was one of you once and I know how hard it is.

Motherhood has to be the hardest job on the planet but I think it is getting harder. Not harder in the it-hurts-to-push-this-baby-out sort of way. Not harder in the must-lug-gallons-of-water-to-the-stove sort of way. Not harder in the pray-my-children-survive-the-polio-epidemic sort of way. No. In many ways, motherhood has gotten considerably easier. Medical advances and indoor plumbing and labor saving devices have done wonders for the daily life of the average mother. These advances have made life easier and given us free time and kept us from looking like worn out pieces of beef jerky by the time we are 40. But they have come with a cost and that cost is driving us crazy.

I had my first child in 1990. Back then I was faced with a few choices: Natural childbirth vs. intervention, breast vs. bottle, stay-at-home vs. work, and cloth vs. disposable. That was it. For me, the choices were easy. There were not categories and subcategories and sub-subcategories. There was no internet to tell you the pros and cons of each decision you made. You just did life. You just lived.

Even then, in these most basic of decisions, people could get defensive. It wasn't all fun and games. There were awkward moments. I held to my mothering principles with much more vigor than I should have. I failed to be as gracious to those who chose a different path . . . or had the path chosen for them. But looking back that seems rather mild compared to the coming storm.

Fast forward a few years and the Great Parenting Debates took over. For the first time I started to see parents treating each other with absolute scorn. No longer were women just a little defensive over their choices. What came next was out and out war.

Parenting programs took over churches. Cultural cliques were formed overnight. Parenthood, and motherhood by extension, became a matter of "doing it right." Schedules and disciplines and programs ruled the day and your success was judged by the behavior of your children. Those who succeeded at the program gloated in their success and gave out exhausting and exalted advice, all with an air of superiority and self-righteousness. Those who just couldn't get with the program were left feeling like desperate failures as parents.

By 1996 I had 4 kids who were as poor at following programs as I was at implementing them. Our life was just . .  well . . . chaos. But it was fun chaos, most of the time. I do remember on more than one occasion being totally overwhelmed and wanting to run off to Montana . . . ALONE, and even once when I actually wished I were deaf, but looking back, I do not have one single regret that I failed to get with the program.

Fast forward to today. I have lots and lots of friends on Facebook who are young moms or young moms-to-be. The choices they have before them are astronomical. The websites, the mommy blogs, Pinterest (oh EVIL Pinterest). The stakes are high. The expectations are huge. The consequences of every little decision are supposedly so dire. At least that is what they say.

Somewhere along the way we began to believe a lie. And it is a LIE FROM THE PIT OF HELL. The lie that there is one right way to be a mother. The lie that we must make every RIGHT decision or the consequences will be catastrophic. The lie that we can control our children's lives. The lie that being a failure as a mother is a fate worse than death.

Run, I say, RUN to pick up your Bible. Turn to Micah 6:8 and read aloud what it says. "He has showed you, O man, what is good. And what does The Lord require of you? To act justly and to love mercy and to walk humbly with your God."

No mention of childbirth techniques or clever birth announcements. No mention of diapers, cloth or not. No mention of schedules. No mention of highchair manners. No mention of education. No mention of medical advances or food sources. No mention of anything specific at all.

God does not require of you to be a perfect mother. The minute you begin to gloat over your successes or wallow in your failures you are using the wrong measuring stick.

So if you want to put your baby in all organic diapers and grow and make your own baby food, go right ahead. If you just gave your toddler a can of cold Spaghetti-os for lunch, no problem, you are in good company (even if no one else admits it). If you can homeschool with delight and your kids thrive in the environment, good for you. If you feel that a professional teacher may be a better choice for your child, you may be right. If you are concerned about vaccines and decide to withhold them, fine. If you are concerned about communicable diseases and feel that having immunizations are in the best interest of your children, go for it.

We are limited and finite and can only do so much. God created us with different strengths and weaknesses, gives us different resources, places us in different circumstances. This one-size-fits-all-robot-Stepford-mom stuff is robbing us of our joy and pulling us away from what we were created to do: To do justice, love mercy and walk humbly with our God.

With sympathetic love-

A Worn Out Mom and Kindred Spirit

How Do You Know?

Why the sudden return to blogging?  I have no idea.  Maybe it's because I now spend vast amounts of brain power writing about cancer, which we all know is utterly fulfilling.  I think I just need a place to throw out all the other thoughts that keep me up at night, however unappealing they may be (see last weeks post on a song that was sung at the Academy Awards.  My mom was way proud of me for that one).  It's actually kind of liberating to write on a blog that only has 3 followers.  Seriously.  You should try it sometime.

Today's topic is a little less artificial superficial than the last one.  But it's something that I JUST CAN'T STOP thinking about.  And here it is.  How do you know when you're done, you know, having kids?  I mean, I've spent the last year or so thinking I was done.  SO done.  Because more often than not, it's a miracle when I make it an entire day without totally losing my crap.  Not because my kids are so horribly behaved or anything (with the exception of Peanut Baby, who regularly tempts me to hang her upside down by her pinky toe for extended periods of time).  It's more because I'm so overwhelmed with all the stuff they have going on.  We are in the car every day from the moment school gets out until 9:45 pm.  Okay, I know what you're thinking.  Helloooo!  Don't have them participate in so many activities!  Problem solved.  But it doesn't really work like that for us.  Not to mention that if they weren't doing so many extracurriculars, they'd be running around the house like wild banchee's.  Believe me.  We're a psychotherapist's dream family.  Whichever chromosome is responsible for ADD has like, quadrupled itself in our kids.  Which leads me to my next issue.  There's not a chance in Hell that we'd suddenly be able to produce a calm child.  We're 0 for 4, so it's not like we'd be holding our breath or anything.  But I seriously don't know if I could handle it.  Then again, I remember thinking that before we had our 2nd child.  And then again before we had our 3rd child.  And AGAIN before our 4th!  So, maybe it's just me.  Which leads me to another issue.  My body sucks at being pregnant.  Last time, if you recall, it decided at 34 weeks that being pregnant pretty much blew.  I know I'd spend 9 months totally stressed about the possibility of my pancreas and uterus backing out of the deal again and winding up with another itty bitty.  I definitely prefer my babies to be larger than dwarf hamsters.

But you guys, I can't get over the idea of it really being...over.  We've done the whole pray and search for an answer thing.  And not that I don't believe it's a good route to take, but so far my answer has been, "you decide".  And, you know, He's right.  We've done a decent job of procreating, so I wouldn't feel guilty or anything if we opted to bow out this time.  We have multiplied and replen-i-shed.  I think I just want another one.  But here's my question.  Does that nagging feeling ever go away?  Do you ever really feel complete?  Is there a point where you can let go and not be terrified that you'll regret that decision some day?  Come on internetz (all 3 of you)!  Give me something to work with!

Cancer is an Attention Whore

My brother has cancer.  My dad has cancer.  Apparently cancer is determined to be the center of attention right now.  If you'd like to follow my family's cancer journey click here.  If, however, you have fond feelings towards cancer, I would encourage you not to read.  Me and cancer aren't exactly seeing eye to eye right now.