Tuesday, August 30, 2011

Pump Antics

Here are a few random diabetes moments that only a D parent would understand. 

TJ came home from school after the first day and said we had to change his pump settings.  I said, "Why, what's wrong?"  He said, "Well, it beeped in class and everyone said, What's that?"  "So, what did you do?"  I said, "Oops."  So, we changed it to vibrate and now, instead of beeping, you can hear him giggling everytime it is done giving him a bolus because the vibration tickles his tummy! 

I walked into my classroom yesterday where a large note sat on my desk.  "Mom, I have no delivery!  I am in science! "  While, this in itself is not funny, the teacher who was with me read it over my shoulder and asked if Taya was expecting me to bring her a package at school!  She seemed quite shocked at this prospect!    Of course, isn't that what a non-D person would think!  But, no, in this case it meant her pump wasn't giving her insulin.  I had forgotten to tell her that I had the set changes in my computer bag.  So, I got her out of class (the benefit to teaching where she goes to school!) and luckily all that was required was a new set.  My mind was already busy calculating all the activities she had ahead and how doing shots for even 24 hours while we waited for a replacement was going to be such a pain!  We have come a long way!

TJ's new words to the song "Stereo Hearts" by Adam Levine and Gym Class Heroes:
     My pump's a pancreas.  It vibrates for you so listen close.  Here's my blood sugar, you should know.  Oh Oh!  Listen up when you feel low. 

TJ's first day with a pump, he, Tylie and I went to the mall.  He said, "Oh, I would really like a slushy."  (Insert appropriate sad face here.)  Tylie took his hand and said, "Well, my brother- that is the joy of the pump!"  So off they skipped to get a slushy and it wasn't even snack time! 

And, while I think we are typically pretty able to find humor in many situations that exist only because we live with diabetes, how cool would it be if we just flat out didn't have these situations anymore?  When Tylie was diagnosed in 2000, our doctor said in 10 years things would be so different.  At first, we did 3 shots a day which we drew up out of a vial.  In the morning we had to make a cocktail of cloudy and clear.  We had to plan everything around the peaks and valleys of the insulin dose.  Then, along came Lantis and we switched to an insulin pen- which at time they called the "poor man's pump."  This was followed by their first insulin pumps which dropped the 6-8 shots a day down to 1 set change a week!  My mom sent me this link today- makes you wonder what the next 10 years will bring! 


Sunday, August 28, 2011

Sleepless Nights

I don't sleep much.  I think this is a trait that I have had as a child, at least this is what my parents tell me.  The slightest sound wakes me up.  Last night was no exception.  Actually, I fell asleep easily enough but then I was startled awake at 12:30 am when Tylie called from the bathroom saying she felt low but she also felt like throwing up.  So, we checked blood sugar (86) and settled on some apple juice.  We waited 15 minutes, checked again and found it was still going down (71).  So, we tried to find something she could tolerate without increasing the nausea.  She had been well over 400 just an hour earlier, so we figured the sudden drop was what was making her feel sick.  Luckily, when we checked again she was 117 so she could return to bed and go back to sleep.  Unfortunately, sleep was not so easy for me.

As I lay in bed I started thinking about work and making lists in my head about what I needed to do on Monday.  I forced myself to stop that line of thinking because it is not at all conducive to relaxation!  But, then my mind wandered back to the week ahead and I mentally started making a menu and a grocery list.  Again, not relaxing!  Taya was having friends sleep over so I decided it would be a good time to get caramel rolls prepared for breakfast.  I usually make caramel rolls or muffins as special treats when friends stay over.  This task complete I got out my book.  Just when I was feeling drowsy, I can hear thunder in the distance and see flashes of light.  Sure enough, within minutes Taylor is calling from her bedroom, "Is it going to storm?"  So, I settle her back down and run outside to put TJ's bike in the garage before the rain hits.   I return to my book and wait for the inevitable thunder boom that will wake TJ.    A couple of weeks ago he was in a building that was struck by lightening.  Needless to say, storms are not his favorite thing.  Sure enough, a big clap shakes the house and knocks out the power.  He is shaking in his bed.  I climb in beside him and lay wide awake while he drifts back to sleep. 

Finally, I creep back to my own room and think to myself that not much has changed since they were infants and I didn't get a full night sleep!  It is a rare night that someone isn't up because of a bad dream, an out of range blood sugar- treated either by food or a trip to the bathroom and a correction on the pump,  or a necessary fingerpoke to determine if changes we made to pump settings are fixing the previously mentioned events!  My husband is blessed with the amazing ability to sleep anytime, anywhere.  Most nights it is more of a hassle to try and wake him and get him to be coherent than it is just to get up myself.  A good night's sleep for me is 4 uninterrupted hours.  Sometimes no one else wakes up-it's just me, and my never ending train of thoughts.  So, I get up, do a kid check and try to return to sleep.  If it's a weekday, inevitably sleep comes about the time my alarm goes off!  Today, however, it is Sunday.  TJ slept in until 8:00 so I got a few extra hours but I think I will take advantage of the waining days of summer and take a nap on the deck in the backyard! 

Tuesday, August 23, 2011


Well, the first official day of school hasn't even started and already the frenzy has begun!  After a day spent listening to speakers and in meetings meant to psych the teacher's up for the new school year, I came home and began reading emails.  Like the book, Give a Mouse a Cookie, I was off and running.  First, there was the note from the school nurse which lead me to remember that I needed to update TJ's health plan as it relates to the insulin pump.  Then I responded to the email from the school dietitian regarding the menu and gluten free options which lead me to make a shopping list.  The list lead me to double check that I had emergency food supplies and set changes ready to go to the high school and middle school.  Finally, I checked elementary backpacks, found the required boxes of Kleenex, added to the stash of gluten free snacks and D supplies I had ready for TJ's classroom in preparation for the open house and a meeting with the nurse in the morning.  After scrolling through the rest of the e-mail on my school account I needed to write checks and fill out forms for Taya's volleyball.  It was a pleasant surprise today that my husband had shopped and was cooking supper.  So, while that was happening I pulled up the family email account, which I haven't had time to check in a few days.  There is a message from Tessa's skating coach reminding us of off ice practice tonight at 4:00.  Well, fabulous!  It was now 6:05! 

Now, I spend a lot of time worrying about Tessa.  Not because she has diabetes or can't tolerate gluten but strangely because she doesn't!  I get built in alone time with the other three kids.  We make doctor appointments an adventure that usually includes coffee or lunch or a little shopping trip.  In addition, I get a lot of time with TJ, just because of his age.  Tessa often gets lost in the diabetes shuffle that is our life.  We try and plan alone time with her and her sisters are really good about spending time with her.  She does an awesome job of taking care of her little brother after school.  In fact, the day we discovered his astronomical blood sugar she was my savior.  I knew what I had to do but a part of me was still in denial.  She knew the number on the meter was too high from watching her sisters and she did not for a minute panic.  She said, "Hmm, that's high."  I said, "Yes, it is" and  with a shaking hand, started making phone calls.  She seemed to sense that I could only focus on one thing and kept TJ totally occupied and calm while I moved around like a robot.  This is notable mostly because Tessa is the first one to be over dramatic, often seems flighty, and cries on a dime.  If you asked me prior to this traumatic event which daughter could handle a crisis best, it wouldn't have been her I named.  But at this time, when it was just the three of us home, she was a rock. 

So, when I told her today that I forgot about her skating practice, I felt a tremendous guilt!  Besides being the only non-D kid, she is the only figure skater in a house of hockey people and I forgot to take her to practice!  And sadly, it isn't the first time.  Typically, I carry around a huge datebook with a color coded schedule carefully written in.  However, I am in the process of trying to be more techy and move it all to an electronic calendar so that I can get reminders on my phone. Clearly you can see the importance of this feature!  I hastily sent a text message to her coach begging forgiveness and pleading for her not to take it out on Tessa.  Missing skating is kind of a big deal.  Tessa, however, while I know she is disappointed does not say one word reprimanding me.  A part of me thinks she might be used to feeling forgotten.  Screwing up is not a feeling I enjoy and I hate it worse when it hurts someone else.  So, on the eve before school starts, my vow is to keep my head above water and leave no child behind!  (Obviously been in teacher meeting for two days!)  In the mean time, I will have to figure out a way to make it up to her- maybe a shopping trip is in order...she is a girl, after all! 

Sunday, August 21, 2011


When I was running at the lake the other day-a unique form of torture and sanity saver- my mind was wandering all over the place.  Now, first let me say that I am not an out rightly religious person.  I have been exposed to a variety of religions and attend church, though not always the most consistently.  Especially when the kids were younger I felt more "peace" at home by myself folding a basket of laundry than I did chasing and shushing toddlers in the church balcony.   I was raised Presbyterian, was a nanny for a Jewish family, got my Master's from a Catholic college and now am a member of a Lutheran church.  I don't think it is unusual for people to question their own beliefs.  In fact, I think it is healthy.  It would not surprise anyone to know that I question them all the time.  So, without getting into that any deeper into religion than that- this is what I concluded on my run: I am grateful the people I have been fortunate enough to connect with in my life.  Somehow, there has always been someone there who knew just the right thing to say or when to not say anything at all.  Often times, they fade in and out and sometimes I didn't even realize until after the fact the important role they played. 

I was thinking back to when Tylie was diagnosed.  Without my friend J, I am not sure where I would have been!  She was the one who had encouraged me to go back to school and to give me the jump start allowed me the privilege of being an instructional assistant in her classroom.  Between her and my friend T, who also happened to be our daycare provider, I was able to somehow come to the realization that I would be doing no one in my family any good if I quit everything just to take care of Tylie.  Tylie's preschool teachers were amazing and along with T, came to the hospital to learn about counting carbs and what highs and lows looked like and what to do when they occurred.  And T was right there again when TJ was diagnosed and learned to give shots without missing a beat!

There are our family friends A and C and their family.  We needed to go to Vegas for a family wedding and wasn't in our budget to take the kids.  Over Easter vacation, A moved in and took over.  C. spent hours on Easter making a huge race track with them only to find out it didn't work!  Their entire family took them in on Easter Sunday as if they were theirs.  When Tenley was in the hospital with pneumonia and we missed our spring break ski trip, A brought her over a bag full of art supplies to cheer her up.  When my husband had his surgery, A and C stayed at our house with the kids and took over when I had a mini nervous break down.   C ran a half marathon with me because it was my goal to do it before I turned 40.  She was not even 21 and she plodded along with me through wind, rain, snow and a bum knee! 

My friends S and F arranged a huge basket of gift cards for food when Troy was in the hospital.  And every time a kid is in the hospital gift cards mysteriously arrive!  For awhile it was so frequent I accused the kids of getting sick just so they could eat at Applebees!  These two make me laugh all the time and when it's time to debrief they can always be counted on for pedicure's or a tea!  And, of course, there are our friends the P's who share the trials and tribulations of having four offspring and who's 7 year old is like TJ's watchdog when it comes to blood sugar and gluten free food! 

R and D are my "running buddies."  Through our early morning shuffles we talk about everything from sports, to kids, to work.  D is possibly the most self-confident person I know. She just got a Harley  She and I have started running 5 and 10 K's a couple of times a year.  My husband wonders what we talk about on these runs- interestingly we never run out of things to say and she is part of the reason I am always questioning things. 

There have also been some reconnection's that stand out in my mind.  My home town friends and I started having yearly gatherings about 7 years ago.  Nobody can know you like people who knew you in high school!  And if they are still your friend- well, that's a gift!  M is an outgoing, diverse woman.  She is always there with a hug and her straight forward talk that sometimes got on my nerves in high school (how could she be so sure of herself?) was suddenly very appreciated!  She has been the recipient of many a late night email when I have been in a medical funk, not only for her nursing expertise but just because I needed that confident voice.  And, they way she survives her own roadblocks amazes me!  There is also L who I am lucky enough to see more frequently and my girls LOVE her breakfasts!  And, of course, B- my skating friend who is now my D-mom friend.  She thinks that we are helping her but she has no idea how talking to her has helped me!

Interestingly, in church today, the subject was of connections within larger communities.  The people that I have named above are just a few of the people we have been lucky enough to connect with regularly.  I can't even thank enough the stranger who held the door open for me when I was juggling packages, a stroller and a lagging toddler and desperately needed to sit down because I was pretty sure that someone's blood sugar was crashing. Or the numerous teachers and coaches that have allowed our kids to be kids. And the incredible team of teachers that I work with who had beautiful yellow flowers waiting on my desk when I returned to work after T's diagnosis and my grandma's funeral.  It wasn't a good week.  It was also, in retrospect, great that my instructional assistant at that time was a no nonsense guy.  If I would have had to deal with an overly emotional person at that time I am not sure I would have ever stopped crying!   We are very lucky - and blessed- to have made such connections! 

Thursday, August 18, 2011

Back to School

School starts next week.  I seem to have blocked this from my mind and all of a sudden here it is!  So, today I have been making lists.  School supplies, D supplies for school, Gluten free snacks for TJ, touch base with school nurse, forms to dietitian, update health plan...you get the picture. 

We have been pretty lucky, I think, with our school experiences.  Thinking back to Tylie, her daycare provider  and preschool teachers were right at the hospital with us learning to count carbs and treat highs and lows.  When she started kindergarten, there was no school nurse, but we met with school staff and created a health plan that worked.  At that time we were still mixing "cloudy" and "clear" and she did not get a shot at lunch time.  Wow- we have come a long way!  We did have some struggles with Taya.  She told me- way after the fact- that the teachers at the daycare she went to before kindergarten would make her eat all by herself.  They said she ate too slow and they couldn't keep track of it in the big group.  She hated going to this center.  But, we always thought it was because she went there alone, without any of her siblings.  It wasn't until recently that she even told me about this memory!  If I had known I would have pulled her out of there so fast.  I still drive by there and want to march in and ask what they were thinking!  She told me of teachers that made her walk up and down the hall in an effort to lower her blood sugar.  She has always been so secretive about having diabetes and these two stories showed me why.  She is slowly working her way through this and having an insulin pump has really helped her to be more compliant.  This is not to say she doesn't struggle but we see progress.  While Taya likes to pretend she doesn't have diabetes, Tylie has been known to use it to her advantage.  Her 5th grade teacher told me once that Tylie was always low at music time.  Well, after some investigation it seems she didn't really like music.  But she really liked spending time in the classroom with her teacher!  But, overall, their experience was good, particularly in elementary school.  The teachers were open and willing to meet.  I came into the classrooms and talked with the kids.  It still breaks my heart when I hear the bad experiences that others have had. 

When TJ was diagnosed he was still at the daycare the girls had attended and T was more than willing to learn how to give shots and get a refresher on fingerpokes.  He also attended a preschool.  There they had not previously had any children with diabetes but the director had gestational diabetes with her last pregnancy and agreed to give him his shot at lunch time.  For kindergarten he attended the same school the girls had but now there was a nurse!  Wow- is she amazing!  She is as irritatingly organized as I am so she double checks everything.  I love it!  When he was also diagnosed with Celiac she contacted the school district dietitian and helped us create a plan so he could eat lunch at school most days of the week.  This year she is as excited as I am about no shots but I have no doubt she will monitor him with his pump just as stringently. 

They have all had their back to school appointments so basals and bolus' have been tweaked.  Now I will work on updating health plans and packing tubs of snacks to take to the class open houses next week. I still will worry if their blood sugar got checked before lunch or if they remembered to bolus or if the teacher remembered to grab TJ's juice boxes for the field trip.  But, I am thankful for the support we have and the plans in place.   The big girls are lucky enough to have their parents teach in the buildings they go to school in so we will go shopping for a stash of snacks for there as well.  Actually, I kind of enjoy the times they have to come to my room because their blood sugar is low.  They usually bring a friend and you can learn a lot about them they don't normally share! 

My goal for this school year are for the big girls to consistently remember to check at lunch time and in the busy mornings.  It is difficult with teenagers because if I remind them, they are annoyed that I am treating them like babies. However, if I don't they "forget."  I don't think that battle will really end, but my hope is that they get to a point where they don't need me to remind them.  Taya actually has a pretty cool plan.  She has a spare meter she put at the end of her bed with a note to herself saying, "Check!" with an arrow pointing down.  It will be the first thing she sees when she wakes up and the last thing she sees when she goes to bed.  Tylie also makes lists.  They have both made huge gains in this area so I am really hoping for the best A1c's ever at their next appointment.  As for TJ, my biggest worry is actually school parties and snacks and more related to gluten than to insulin.  And I will write more about that later!

Wednesday, August 17, 2011

A Child with Diabetes

I dislike it when my children are labeled "diabetic."  For example, someone will see us do a fingerpoke and say, "Oh, she is diabetic."  Now, I know that this is not meant to be insulting, it is a fact.  But I really dislike the label.  I usually respond, "Yes, she is a child with diabetes."  Sometimes, even now, when I hear the word "diabetic" I picture older, overweight people- the stereotypical image of Type 2.  I think many people conjur up this image because I have been told many times by well meaning people how lucky we are to have caught it so early so they can just "outgrow it."  Wouldn't that be nice!?!?  I often wish it had a different name, just so it was easier to differentiate.  Only 5-10% of all diabetes diagnosis are Type 1.  I am always tempted to go into a long lecture about how it's Type 1:  their bodies can't make insulin, their pancreas does not work because their autoimmune system misfired and broke it and now they need shots (or a pump) everyday so that they may live. Yes, exercise helps.  No, there isn't a cure.  Yes, they can eat candy.  No, it's not contageous.  You get the picture. 

I had the priviledge of attending a day at Diabetes Camp with TJ this summer.  Both girls like camp but Taya loves it.  She would live there if she could, I think.  As I mentioned before, she is much  more secretive about having diabetes.  She likes to blend.  But, at camp everyone is in the same boat.  She has made some very good friends there that she keeps in touch with regularly.  Each year she comes back from camp renewed and this year she will even wear her pump site where people can see it!  So, I went in to camp already liking it and since the girls had been going for years had a pretty good idea of what went on.  What I was not prepared for, however, was how incredibly humbling it is to be one of a handful of people who do not check their blood sugar before eating!  I was the minority.  And these kids- so amazing!  We live with diabetes every single day at our house but I watched these kids help each other, do fingerpokes while talking about campfires, playing games, swimming, laughing at each others silly jokes and it just brought tears to my eyes.  When they had a group meeting they cheered on the little girl who did her own shot for the first time.  They teased the counselor who did not have diabetes but agreed to wear a pump for 3 days to be like everyone else.  They laughed at the kids who got hit with the water machine gun for getting so much mail.  These were not "diabetics"- these were kids- amazing kids- 56 of the 215,000 people younger than age 20 who happen to have diabetes.

I have mentioned that my kids are active.  Tylie played volleyball until this year and still is active in soccer, she runs, works out and has a passion for art.  Taya plays hockey, volleyball and soccer.  Tessa is a figure skater and there is a girl who wears a pump on her Synchro team and TJ plays soccer, hockey, and baseball and is begging me to sign him up for karate.  In between all that they downhill ski in winter and water ski in summer and swim anywhere there is water and time to spare.  There is nothing we have told them they cannot try.  Diabetes does not define them.  Looking at them, you can't see diabetes- you see children.  Children who laugh, cry, play, argue, and fight. Sure, there are times I check blood sugar to make sure that the crying doesn't have a cause other than frustration or sadness or so that I can yell back at them freely without feeling guilty when I later realize their blood sugar was off.   Yes, packing for a trip takes a little planning and we never leave the house without a backpack full of T1 gear and a days supply of food.  But, when they are all loaded in the car and we are ready to go I don't see "diabetics" behind me.  I see 4 pretty awesome kids- 3 of whom just happen to have a naughty pancreas!

(Statistics taken from:  http://www.diabetes.niddk.nih.gov/dm/pubs/statistics/)

Tuesday, August 16, 2011

What the Books Don't Say

        It was a brisk fall day when I came home to my excited then 9 year old and her new pet Anole.  The Anole was a gift from the 4th grade teacher.  Taya was “lucky” enough to win the lottery.  Our initial thought was it would teach her responsibility.  After all we managed diabetes, how much work could a tiny lizard be? 
          Our first job as Anole caretakers was to get the creature from its small carrying cage to our larger retired hamster cage.  So, we filled the aquarium with dirt, found some grass and sticks and then were stuck!  Dad, the man of the house, was gone so that left a bunch of girls who were scared of spiders to try and move the thing.  With my 6 year old offering lots of advice, lots of screaming from Tylie and Taya and maybe a few mumbled curse words from mom, we finally got the little bugger in the cage with no one actually having to touch it. 
          Okay, next step, off to the pet store.  Here we encountered a dilemma.  Do you know that an Anole costs a mere $7 to purchase but over $100 in supplies required to keep it living?  It is true. It needs two kinds of lights; one for warmth and another for basking. It eats only live things such as crickets and meal worms and it needs to be sprayed down daily to keep its reptile skin moist.  In addition, we have to change his bedding monthly.  At this point, we are reconsidering.  First of all, we are scared to touch the lizard itself, we are rarely home to make sure it gets 12 hours of light a day, and now we have to consider feeding it live crickets and worms!  Keep in mind, throughout this store expedition, we are also chasing a 2 year old and trying to keep his hands out of the turtle tanks.  So, after some deliberation, we decide we can not handle this responsibility and carefully return everything to its place and head home.
          Once home, we call the teacher and say we must return this lovely reptile to school so that she may give it to a family that can truly appreciate it.  After a few words meant to change our minds, we remained firm and turned to try and get the monster back into its carrying case.  This proved to be somewhat easier as it seems they prefer to climb up, rather than down.  After a few minutes of poking, cringing, and yes, more screaming, we got him safely back in his original container.
          Meanwhile, my then eleven year old is trying to wiggle her way out of a family event for the weekend by asking if she can stay with a friend.  Being a rookie at this adolescent mood changing thing, I am confused by her tears before she has even asked me the question.  This is followed by her instant defensiveness when I ask her to check her blood sugar. I always like to know if these crazy moods are related to highs or lows or just you average hormonal overflow.  Anyway,  my stress level is high due this conversation, the lizard, packing for the trip, and trying to determine what to fix for supper.  So, when I look into the lizard cage and find it missing, let’s just say I may have overreacted. 
          I assign one kid to look through the newspaper pile on the counter, another to crawl along the floor and the 3rd to climb on the counter and check above the cabinets.  The 2 year old thinks this is all hilarious. I call my husband, who also thinks this is hilarious and is of no help at all.   After 10 minutes we turn up nothing except some inappropriate words from my vocabulary, said in my head of course.  I asked Taya to look in the cage again.  She takes a stick and starts to poke around.  She gives a squeak and I turn to see the little lizard emerge from the dirt.  It seems they like to hide and he had burrowed in and turned brown.  Lovely! He was probably hiding from the chaos around him like I wished I could.   I really just wanted to bring it back to school!
          Somehow, we made it through the evening.  The lizard lived to see its new home, my eleven year old got over having to deal with family obligations and Taya and I learned that you research, A LOT, before agreeing to be the foster parent to the class pet!  Just one of those little episodes they don't prepare you for in the parenting books!

Monday, August 15, 2011

Our Story

In January 2000, I was 3 months pregnant with our third baby.  I had just quit doing home daycare, started a new job and was days away from starting work on my Master's degree.  Over Christmas, we had noticed that Tylie, our 4 year old, had been eating more.  At times she ate non stop, but she was a tiny thing so we just thought she was going through a growth spurt.  Then a few weeks later I began getting calls from daycare that she was wetting her pants during nap time.  My mom instinct knew something was wrong but I figured it could be fixed by antibiotics.  So, holding her in my lap at our family doctor and listening to him say he had a suspicion it was Diabetes and that he would need to refer us to someone else, I felt like I was an observer in someone else's life.  My husband had not even come to the appointment we were that sure it was nothing.  I remember looking at the doc as he talked and not hearing him but thinking, "I must not cry in front of this baby."  Somehow,  I got out of the office, an appointment scheduled with a pediatrician, and no idea what to do until then.  I honestly can't remember telling her dad or his reaction, such was my daze.  We met with an diabetes educator, who showed us how to check her blood sugar.  Because it was late in the day and her numbers weren't totally out of control, the doctor thought it would be less traumatic if she were admitted to the hospital in the morning so we could prepare her and she could have a good night's sleep at home.  However, it happened to be her dad's birthday and after a basket of tortilla chips her blood sugar spiked.  We called the doc and at 10:30 at night found ourselves driving to the hospital.  My stomach still turns thinking about it and the horrible sensation of watching her go from excited about this new adventure to terror when they tried too many times to insert an IV.  All of this could not be happening to my baby!  She was perfect!  Meanwhile, dad was holding it together and taking care of our 2 year old until grandma could help us out.  And so began our adventure with T1 Diabetes.

The next morning we were introduced to a diabetes educator and a nutritionist.  We were very lucky to have them.   Their realistic and reassuring approach helped to calm us, at least long enough to learn how we could possibly manage this incredible responsibility.  That doesn't mean doubts didn't exist or in the dark of the night I still don't think "what if" but I truly believe without these two women and our amazing support system of friends and family I would have been admitted to the psych ward before day 1 was over!  Remember I was pregnant- the hormones were raging and this was just too much.  I thought I'd have to quit working, couldn't imagine sending her to school, wondered when I'd ever sleep, how I would let her out of my sight...my mind wouldn't stop.   We learned new words like "cloudy" and "clear", "long acting and short acting."  The words "high" and "low" suddenly had new meaning. And we learned a "keytone" had nothing at all to do with music.   Tylie, on the other hand, seemed to be taking things in stride.  She insisted on bandaids after each fingerpoke.  We called her the Bandaid Queen and the nurses indulged her by giving her a new color each time.  While my stomach turned and my hand shook the first time I gave her a shot, she didn't even flinch.  She met the doctor with giggles and a resilience that still takes my breath away.  Somehow, though, we learned enough to take her home. 

And life moved on.  Her little sister, Taya, watched her intently and idolized her every move.  Her nickname was Me Too.  However, getting diagnosed with T1, in my opinion, was carrying the idolization too far.  But, shortly after Tessa's first birthday, that was exactly what happened.  I was in class and when I got home my husband said he had a feeling about Taya and checked her blood sugar.  Sure enough- it was high.  We called our doc, who ran the tests and confirmed the diagnosis.  This time, I do distinctly remember her dad being angry.  I didn't want to think about it- anger, sadness, fear-  I just knew I had 3 babies to take care of and I was already barely holding on.  But, we had caught it so early that she did not have keytones and so she was not admitted to the hospital.  She marched out of her appointment so proud of her kit that matched her sister's.  That excitement did not last long and of the 3 of them, she is the one who is noticeably the most angry, the one who didn't want anyone to know, the one who cried every time she had to have a shot.  Thank goodness the pump has freed her from the 6+ daily shots she was getting. 

Miraculously, Tessa made it through age 4.5 without any more trouble than having her tonsils removed.  And we smiled after TJ turned 5- sure we had dodged another bullet.  But then, January 8, 2010- nearly 10 years to the day of Tylie's diagnosis we found ourselves back in the hospital.  By then, the girls were both on pumps so this whole notion of giving shots was just as foreign as it was the first time around.  And I was furious.  This could not happen again- not to my baby boy!  It was much harder to hide the tears this time around when we know our team so well and they know us.  Their grief at his diagnosis was as genuine as ours.  But, our little boy met the challenge and his sister's jumped in to help him out.  However, he was still not gaining weight and his other blood work was off.  Eventually, an endoscopy showed positive for Celiac Disease.  I have to tell you I think this was the worst.  We had taken to heart that "above all they are kids first."  We never told them they couldn't eat cake at birthday parties or that candy was off limits.  We just tried to show them balance and moderation, something every child should learn.  Now, here we were faced with telling our son he could not eat those cookies he loved and he'd have to bring his own pizza to the class pizza party.  I actually cried in the store the first time I went shopping because the checker had forgotten to ring up the chocolate pudding.  The one normal thing he could eat!  And that idiot checker wanted me to go back in line to pay for it!  Lucky for us we are blessed with an amazing little boy who has met this challenge with hardly a blink.  He was playing hockey the day after discharge and once his new diet was established he gained 6 pounds and grew half an inch in 1 month!  He is such a regular at the doc's office he knows the routines.   While on a trip we had to go to a walk in clinic for something unrelated to Diabetes or Celiac.  The nurse came in to get all his info down and as she moved to leave he said, "Excuse me, but you forgot to check my blood pressure."  The nurse looked at me like I was some sort of crazy person, while I just smiled and shrugged. 

And, that is the story of my 3 T1's.  I still don't get it- we did everything right.  I read all the books, I took my vitamins and avoided caffeine when pregnant.  I nursed and didn't introduce a new food until the doctor told us it was okay.  Ironically, the kid that escaped T1 is the one I nursed the least and was probably surrounded by the most stress before and after birth!  And that is another struggle- making sure we don't forget her in the midst of A1c's and target blood sugars.  But that's another entry.

Sunday, August 14, 2011

Why Am I Doing This?

Why am I blogging and why would you care?  I am a mother of 4.  Type 1 Diabetes has lived in our house for nearly 12 years.  It came as a huge shock the first time around when our oldest daughter, Tylie, was diagnosed.  She was 4 1/2 years old.  We had no history in our family and then boom- there it was!  And along with it came the comments like, "How can you possibly give your child SHOTS?  EVERYDAY?" "Does it run in your family?" and my personal favorite, "That is why we NEVER give our children fruit snacks!"  A year and a half later, just when we thought we were getting good at this Diabetes thing, daughter number 2- Taya- also age 4 1/2, was diagnosed with T1.  Well,  we rolled with it and so did they.  We breathed a sigh of relief when daughter number 3- Tessa and son number 1- TJ- made it passed the fateful 4.5 without any problems.  However, when TJ was 5 1/2 that changed.  The words Type 1 Diabetes are not any less heart wrenching the 3rd time around.  Six months later, he was also diagnosed with Celiac.  Our smart Diabetes Educator told us when Tylie was diagnosed that "above all else they are kids first."   So we adopted that  motto and  we balance T1 appointments, fingerpokes, and gluten free eating with sports like hockey, volleyball, baseball, and soccer.  Their dad is a coach so aside from their own activities, they spend hours in ice arenas and at baseball fields.  And we try to not forget our Taylor, the kid who her sisters are convinced was left in the backyard by aliens since she escaped the need for  multiple daily fingerpokes.  

So, with this first entry, I just wanted to give you a brief intro to our crazy family and tell you my hope for this blog.  Starting a blog has been in the back of my head for a while now.  I have always loved to write.   I just wasn't sure how to start or what I had to share.  Recently, the daughter of a good friend of our family -coincidentally age 4.5- was diagnosed with T1.  As I have been talking to her and reliving our experiences, ideas started to form.  Maybe I do have something to say.  Then she said to me- "You should start a blog.  There is not a lot out there for T1 families."  She followed it up by sending me the title you see for my page.  So, here goes.  I changed the kids names to protect their privacy, but if you know our family, you will know who I'm talking about.  I don't for a minute think I have all the answers for you.  However, I would never want anyone to take this journey alone so at the very least, maybe this will give you support you can't always find.   I would also like to give you hope- so that you know other people have been there and somehow found a new normal and then discovered normal wasn't normal after all!  I welcome you to take this journey with us- it might make you laugh or it might make you cry- we will see how it goes.