Wednesday, December 14, 2011

Taking Time to Breathe

I am not feeling the holiday love this year.  I don't know why, exactly, but in talking with others I don't think I am alone.

On the work front-  yesterday we were discussing how busy everything seems.  We have so many changes going on.  Keeping up with the state and national requirements to make Adequate Yearly Progress and be Highly Qualified takes time.  Sometimes it takes time away from the students and then as a teacher you are planning for days when you will be gone and then when you return, making up for ground that didn't get covered.  As a special education teacher, on top of planning appropriate lessons there is paperwork, more meetings and dealing with the daily crisis situations that pop up.  Often times these crisis are less a result of the student's behavior and more a result of their parents.  I haven't even mentioned the actual time teaching! Holidays equal stress and when you work with students and families who's stress level is already elevated- add more and they boil over!  As hard as we plan to be proactive, this time of year I always feel more reactive and as a result, I take more stress home.

On the home front- where to begin?  We are full swing into our hockey/figure skating season.  I have been on one bus trip and leave for another on Saturday.  I love watching the kids in their activities. I love hearing about the good things that happen in their days. I love watching them play together when they are all getting along.  They remind me of puppies, laughing and giggling- just a pile of kids!  I do not love the moment when playful turns spiteful and someone is yelling at someone else for borrowing without asking or entering their space without permission.   I do not love the impatient response often heard from a teen girl or my snappish response in return.  I do not love all the time away from home and the laundry that seems to breed and the groceries that magically disappear along with the kitchen counter as stuff piles up on it!  I do not love the rush of trying to get from one place to another, organizing rides, papers to be signed, checks to be written, appropriate food supplied for each respective party, and the endless  lists that are running through my head while I should be listening to TJ read.  Before 7 am on most days I have put in a load of laundry, emptied the dishwasher, started supper in the crockpot, and packed a lunch or two.  When I can, I try and squeeze in a workout and every 3rd day, I help TJ with his set change.  Then everyone else wakes up and the sounds of "Where's my jeans?" "Do I have clean underwear?" and "Where's my coffee?" fill the air and try as I might, I am on edge and I'm tired!  Always tired! 

On the holiday front- well, Christmas Eve is 3 days away and I am not done shopping or wrapping and barely have my decorations up.  And, I'm already stressed out about when I will find the time to take them down!  I had my Christmas cards for two weeks ago and finally got them into the mail yesterday.  I love to buy the kids presents.  If I could, I would buy them everything they wanted.  Of course, that isn't possible for 2 reasons- first, the expense and second, what lesson would that teach them.  But, even knowing this I always feel an strange guilt that I can't give them everything.  At the same time, this isn't even supposed to be the primary focus!  This year, I did make them write a list that included something they wanted, something they needed, something they would wear, and something to read.  I am going to do my best to tone it down this holiday.  Considering how last minute this is getting, maybe it will be easier than I expect!  Then we have two days at home and load up for another trip.  I haven't even unpacked my bag from last weekend!  The bonus is the whole family is going but that also means packing my tub of food so everyone can eat!  We have some favorite restaurants but we always need gluten free backup.  And so you see why the lists in my head never go away!  They are endless checklists from which there seems to be no escape! 

On the plus side- not to focus solely on negativity, there are some good things going on since I last had time to post.  Tylie cleaned the living room while I was away last week.  We battle frequently on the T1 and homework front, but she has helped me a great deal taking care of her little brother and sister after school a couple of nights a week.  Taya is finding her groove in hockey and at school.  Her grades have been going up, her points have been going up as well as her penalty minutes, which makes her dad proud!  She has even surprised me a few times with a clean space!  Tessa is doing well in school and her Synchro team just placed first in a competition against 9 other teams.  They were so fun to watch!   She has her first individual advanced competition coming up and is working hard for that.  It occurred to me how different the girls were while I sat at a rink with girls in full make up and fancy hair covered in sparkles,  I was receiving texts from  home about the other one getting penalties for checking!  What a contrast!  TJ is loving life.  He loves school and hockey and the New England Patriots- his latest sport obsession. He was Joseph in the church program which made up for the fact that he didn't get a part as an elf in the school program.   He takes all of his knocks in such stride, he is my hero! 

So, things aren't all bad- just rushed, crazy and often out of control.  I am really hoping that sometime during this break from school we can all take a deep breath and "reset."  Several events these last few months have made me really think and reflect about what is important.  I would like to spend more time "in the moment"  appreciating what I have and where  I am, instead of "on my list" and what lies ahead that I can't necessarily control.   Obviously, flying by the seat of your pants isn't an option when you are as busy as we are and health issues come into play, but- that's my goal for the New Year- to let go of things that I can't change or that really in the end don't  matter!  The hard part will be to slow down long enough to recognize this fact!   

Sunday, November 20, 2011


This week I had the "opportunity" to be a single parent.  The husband was in Ohio for a work training.  Unfortunately, this was what I term- OPENING WEEK- of our busiest time of the year.  So, beginning Sunday I managed a total of 6 hockey practices, 3 figure skating practices, 2 parent meetings, and a figure skating test session.  This is on top of my paying job- which for some reason was even more high need than usual- and the basic requirement of providing food, clothing, shelter and in our case Diabetes care to the offspring! Thanks to help from all the kids, grandpa, and some friends for providing some rides, we survived! 

I knew that I was feeling stressed out but it wasn't until Saturday morning as we were racing around getting ready for Tessa's volleyball game that I exploded.  I had asked for a few things to be done around the house before visitors came that afternoon.  When Tessa and I got home from the game, it wasn't done.  Of course, when I asked about it, there was a million excuses.  One was too busy, one forgot, and the other couldn't even hear me talking because she was so focused on Facebook.  Let's just say what followed was not 10 minutes of my best parenting!  In the end, they did what I asked, however it was one of those parenting moments I would have liked to take back.  At the same time, I wonder why I can manage a room full of kids with emotional disorders all day long and rarely lose my temper (at least outwardly) but my own kids can turn me from Super Mom to Banshee from Hell in a matter of minutes!  Is it that I expect more from them or that ultimately I am annoyed at myself for not being able to "do it all?"  I know that they need to be responsible for helping out at home, that is what will make them responsible adults.  But, wouldn't it be nice if they didn't have to anything they didn't want to do?  Wouldn't it be nice if I didn't have to do anything I didn't want to, for that matter!  (I am speaking strictly HOUSEWORK here!) 

So, as I leave to take TJ to a birthday party, I am still feeling pretty high strung.  I am mumbling to myself about all the things I need to do and not enough time and wishing we would strike it rich so Alice from the Brady Bunch could move in and clean my house, do our laundry, and cook our supper!  I would even take an Avocado colored kitchen if she came with it!  I am taking a few cleansing breaths as we drive and I notice a lady walking down the street with a shopping cart.  She is dressed in many layers of clothes.  Granted, it is 14 degrees outside so this is necessary but in her case, the layers didn't work together in a fashionable way.  It was more functional and her shopping cart seemed to contain an equally random mix of things.  TJ said, "She sure had to walk a long way from the grocery store to get home."  I had to explain to him that she wasn't coming from the grocery store and that everything she had with her probably was her "home."  Talk about perspective slapping you in the face!  And for whatever reason, on that freezing cold day, it seemed like there was someone on every corner.  This is North Dakota- there should not be people on street corners at all, much less in the winter!  When we got to our destination, I sent an apology text to the girls for losing my temper.  I realized I wasn't so mad at them for not doing what I asked, just feeling the stress from the week coupled with that parental feeling that comes with teenagers that they take everything for granted!

On my way home, I tried to remind myself to live in the moment and not get so caught up in the big picture all the time.  Worrying is my specialty.  I have gotten better about not letting it consume my life, but there are still times that it takes up more energy than it should.  I am still a work in progress in this area.  For this weekend, we were lucky enough to have some family in town visiting.  This gave me a chance to refocus.
The husband was safely home, Tessa passed her first ever figure skating test, TJ had a birthday party,
we watched some hockey, we watched the kids swim, we watched them fight and we watched them become friends again.  As a bonus, my new breakfast in a crockpot recipe was awesome!  As I type this, Tylie is folding a basket of laundry that I didn't even ask her to fold.  Who needs Alice?  OK, I won't lie, she would be a nice addition to our family, but the bottom line is- we are blessed.

Monday, November 14, 2011

All in This Together

We have had two diabetes related appointments in the last 5 days.  Tylie went last week and met with the Diabetes Educator.  It wasn't a good meeting and it wasn't a bad meeting.  Her A1c was exactly the same.  Now, I would love for that number to go down a little bit, but it isn't horrible.  Taya had an appointment today with the Nurse Practitioner that manages their pumps.  Again, it wasn't a good meeting or a bad meeting.  Her A1c went down .3, which isn't much as it still has a way to go.  However, going into each appointment, both girls already had a pretty good idea what the professionals were going to tell them.  They need to be more diligent.  This is the part that kills me.  I know that being a teenager is hard just by itself.  The teenage brain is forgetful, this is what science tells us anyway.  This same 'forgetful' tendency that drives me crazy when the forget to sweep or dust or take out the garbage or do their homework- breaks my heart when they forget to test their blood sugar or bolus for food.  I understand the science behind it, I just hate it.  Overall, the girls are very responsible. They have decent grades, they work hard in their chosen activities, they help with their younger siblings.  They don't make bad choices as a rule.  Just this weekend Tylie went to go pick up a friend that found herself in an uncomfortable position after she herself had chosen not to stay because she "had a feeling" it wasn't going to go well.  I am very proud of them because I have seen other children with chronic illnesses make some really bad choices- some would call it rebelling- as teenagers.  I know there are many (most) days they are angry and dislike being attached to a machine.  But, they persevere. 

We have reached a stage in diabetes management where I have to let them find their own way.  They have to live with this for the rest of their lives for all we know today so they need to find a way to manage it that works for them.  Sometimes they get into a routine that works and we have some A+ days.  Other times, they get sucked into 'life' and diabetes management suffers.  As the parent, I still ask if they checked each day, upload their pumps on occasion to keep them honest, but I too get sucked into life.  They have become so responsible, that there are days that I take it for granted they are taking care of themselves.  After TJ's last appointment when he had the perfect A1c, he showed it to the girls and their response was, "Mom does it for you, of course it's good."  That was a reminder to me that I need to stay more involved.  They might be as tall as me and drive their own cars, but they are still kids.  Even when they look at me with the rolled eyes, or talk to me in that bored, annoyed voice- it's my job to check on them.  Which, kinda stinks actually because if you have ever parented a teenager you know that they think you are an annoying idiot most of the time!  Chasing after them asking if they checked their blood sugar or if they have emergency supplies with them does not win me any brownie points, let me tell you!  But, they can spend hours doing their hair or deciding what to wear.  It seems it should be easy to find 30 seconds to check blood sugar and bolus as needed.  We are working toward a balance.  I will watch them do finger pokes in the morning and at bedtime.  If we are together at supper, I will police that, too.  The rest of the time, I have to trust (and maybe send a friendly text reminder or two) that they are making good decisions and following through.  TJ has agreed to assist me with the morning reminders and if I am on the road with one kid or another then it's dad's job!  We truly are all in this together.  This is not going to be easy as we start our busiest time of year but the next A1c is 3 months away and my goal is a 1 point drop for each of them!  I think it's an appropriate goal for World Diabetes Day.

These are the insulin angels that Tylie and TJ made at our last support group get together.  I thought it would be appropriate to post the picture today in honor of all the Dkids that are alive today because of the discovery of insulin (Thanks, Dr. Banting!) and all the angels in their lives that help us fight the battle every day!

Tuesday, November 1, 2011

Why TI Diabetes Day?

This past weekend TJ, Tylie and I had the opportunity to attend a workshop for families and children with diabetes.  Taya and Troy were unable to attend due to a volleyball tournament.  Tylie had been asked to paint faces of the littler children there and to help with the children's part of the workshop.  At the end, she and I were part of a panel of families talking about about the insulin pump. 

Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1.  Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding.  It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin.  She has Juvenile Diabetes."  We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition.  And, naive as we were, we asked when this would happen.  We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin.  Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them.  This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin.  This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise.  In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times.  That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.

Now, 12 years later,  I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need.  In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear).  She started out on the tinest dosage- under 2 units total.  I kept thinking this microscopic dot of stuff sure caused a lot of trouble!  She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night.  Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it.  While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come."  Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!

We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus.  Lantus lasted 24 hours without peaks and could serve as a "background" insulin.  The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food.  We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier.  However, shots were still required and in Taya's case, sometimes up to 8 times a day.  And, they were not fun.  We kept hearing about this thing called the insulin pump.  This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days.  (Okay, I am simplifying here, but you get the picture.)  However, there was also this thing called insurance that liked to put up road blocks.  But, many letters and pages of documentation later- the girls got their own insulin pumps!  They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed.  What a blessing these little contraptions are for these kids!  Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change.  She told her, "That was 17 shots I didn't have to take!"    However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time.  He is now also on an insulin pump.

So- yes, things have definitely changed!  And for the better- but it isn't perfect.  It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy.    There are lots of bumps along the way and lots of room for human error.  The pump is a great tool for the potential to successfully control diabetes but it isn't the answer.  My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin.  But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day.  All things that the body of a person without T1 does without an ounce of thought. 

And, now, back to where I began.  Research!  Europe is so far ahead of the US in this area.  The first closed looped artificial pancreas was started just this last week.  Two places making great strides on this continent are Sanford Health and the University of Minnesota.  (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells.  This would eliminate the need for anti-rejection medication because a woman could use her own tissue.  They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1.  The list is endless.  JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US.  86% of all funds donated to JDRF go directly to research for Type 1 Diabetes.  This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts.  These studies also pave the way for insight into other autoimmune disorders.  Links below are provided for some more reading on these studies and JDRF in general.  These studies currently provide hope and I pray for the day the provide a cure!

Tuesday, October 25, 2011

New and Different Things

Last weekend, Taya spent three days at a youth leadership event for church.  She was signed up to go to the event not so much by choice but because she had missed the big retreat required for Confirmation because she was visiting her aunt in California.  This was an opportunity to make up for that time.  She was not super excited, especially given that she knew none of the other people going along.  A few days before, it occurred to me that she would be spending two nights in a motel without any family or certified diabetes educators in sight.  This made me a bit uncomfortable since it was 100 miles away!  I sent an email to the Youth Pastor with cautions and concerns followed by a text message to my friend, who happens to have a T1 child, to let her know that Taya would be in town and might need to call.  I got reassuring responses from both so the following afternoon, we took our little girl to church.  She did not complain one time, but that sad look on her face was tough to see.  That day we got some texts from her, some phone calls and a Facetime call that night.  She was not having fun.  Luckily, I was already asleep when she Facetimed or I am pretty sure I would have jumped in my car and picked her up.  The next day, I sent her a text in the morning wishing her a better day.  I did not hear from her until 2 pm.  This was a text saying she had been cleaning up the zoo and today was going better.  Then, we heard nothing until 2 pm the next day, letting me know when to pick her up and asking if she could go hang out with her new friend later that night.  Wow, what a turn around!  She ended up having a really good time and even mentioned next year's event.  She was most impressed with all the work done in Minot, having toured it a few months ago.  While nowhere near restored, progress is being made.  I am very proud of her.  I know that when I was her age nothing in the world would have gotten me into that car to travel that far not knowing what was ahead.  Now, she has to present in church.  I think for her that is even more traumatic!

Another good thing that happened recently is I found a recipe for making Gluten Free Cheese Crackers!  And, better yet, TJ likes them!  As does Tylie.  She ate all the crispy outside edges before they had even cooled.  The best part is- they are easy!

4 oz Cheddar Cheese
4 TBSP butter
3/4 C Corn Starch
1/4 tsp salt
1/4 tsp Xanthum gum
1/2 tsp baking powder
2 Tbsp Milk

Melt the butter and then add the cheese until both are smooth.  Then add dry ingredients until a crumbly mixture and well mixed.  Add the milk.  Spread out in 1/8 inch thickness on a greased cookie sheet.  I cut into squares and then poke a hole in the center of each square.  Lightly salt the tops and bake at 400 degrees for about 8-10 minutes.  

Tessa and I got to spend some quality time together as well.  First we got our hair cut and then we made cookies.  That part didn't go super smooth, but the end result was very nice.  You will see in the picture that TJ is also eating a cookie.  His is a decorated chocolate chip cookie since we didn't make the others gluten free.  They are for Tessa's demonstration speech at school.

Troy- with some help from the kids and a lot of help from his dad- got the boards up for our backyard rink!  For the first time in awhile, people in our house are looking forward to some cold nights so they can start flooding.  However, after writing in our winter schedule, I hope we have time to use it!

           And, to end with something funny, just in case anyone reading this thinks I have it all together all the time!  Today, at home it was a morning like any other- scurrying around, packing lunches, checking for warm enough coats, meters packed,etc. Nothing unusual at all.   I arrived at school and went down the hall to check on something and realized my shoes didn't seem quite right.  I looked down to discover that I was wearing two different ones!  Seriously, how does that happen?  They weren't even the same color!  So, quick phone call to Tylie, who saved the day by grabbing me a matching pair and dropping them off on her way to school.

Monday, October 10, 2011

New Normal

I wish that I had more time to write.  My real job seems to be interfering.  Then when I have time to sit down and start, I have trouble narrowing my topic because my mind swirls. So, this will be a bit of a "week in review."

Monday I went to parent teacher conferences for Tylie.  Imagine my surprise when she had a D in her father's class!  I called her and made her come up and take the test before she could go to the soccer game. I would like to claim this as my idea but it was really my friend D's suggestion!  I was waiting for a huge argument and was really pleasantly surprised when she not only came to take the test but visited the remainder of her teachers  with me.  Overall, reports were good so I guess we will keep her.  I was surprised, however, that with the exception of the teachers who had had her before, they were not aware of her diabetes.  This is the first year that I have not sent out a note- after all, she is a junior and can speak for herself.  Plus, the information is on Powerschool so I trust that the teachers see the little red medic alert sign by her picture.  Apparently not the case.  So, for my own peace of mind, I sent out a note.  My reason is as a teacher, I would want to be aware.

TJ was student of the week this week.  That means we got to write all about him, send pictures to school and I got to go and visit his class.  I usually take this time to do the big "D" talk.  This would be the 3rd time I have done it for him.  A few of the kids have heard it since preschool.  They could probably have given the talk!  I love going into classrooms of little kids.  They are so accepting and if you are open with them, they are honest right back.  The questions they asked were very thought provoking.  And, of course, they were appropriately excited about the coloring sheets I brought along.  We made Rice Chex bars.  This is our gluten free version of Rice Krispy bars.  They are perfect because they are also peanut free so everyone in class can eat them.

So, after that 'feel good' presentation, the next day I got a call because his pump wouldn't stop alarming.  We did all the problem solving we could over the phone but I ended up taking a trip to school.  Luckily, he just needed to have his set changed and we got his blood sugar back under control.  However, the teacher got her first glimpse of what a high blood sugar looks like when she had to practically scrape him off the ceiling.  He tends to get VERY energetic initially followed by 'the crash.'  At least now they will know what to look for and when an additional finger poke might be necessary.  Ironically, this call came after the nurse and I had spent the previous day going through a variety of scenarios and what steps staff would need to take in each situation.

Friday, we went to a wedding.    It was cold and windy and it was outside.  However, that isn't what I worried about.  I worried that there wouldn't be any food that Trav could eat.  As it turns out, I didn't really need to spend time on it.  First of all, his little back pack is usually so full of stuff, he could live for a week.  Second of all, he is so darn responsible, he doesn't put anything in his mouth without checking with me or another family member first.  And third, his little friends he hangs out with are like police!  So, he managed the wedding without cake and in fact, didn't even ask for cake.  He was quite happy with the candy corn/peanut snack mix combination.  I also worried that the girls would eat a ton and not put the carbs into their pumps.  This is a legit worry- teenagers are tough!

The result of all these little incidents this week makes me think of the quote, "You plan and God laughs."  Now, don't get me wrong, I will still plan.  Sometimes I will even over plan! And I nag!   I can't help it.  However, I have gotten somewhat better at going with the flow and not panicking when things stray from my plan.  This is not always easy, but I think I am getting better.  For example, Sunday, Troy and the two oldest girls left for a Leadership conference for school.  Originally, Taya was not planning to go.  However, an hour before departure, Troy realized that he had an extra space for a girl and she was a freshman so she was invited to come along.  Initially, she didn't think she would be ready to go, but I said I would grab her D stuff if she got her clothes together.  So, she packed with the help of her older sister and I did inventory of the ziploc bags going along- set changes (2 kinds),  inserter, insulin, extra strips, extra batteries, etc.  And, by the time they needed to leave, she was ready.  I was amazed.  First of all, I would never have been so so spontaneous at her age and second of all, that I so easily supported her going.  There was a time when just the thought of reorganizing supplies and making sure there was food for emergencies and going through all the "what if" scenarios in my mind would have been too overwhelming for me.  But, luckily, I was over that and she got to go and experience something new.  Ironically, the dad did forget his medicine!  (Now next time he will find me nagging about that! Apparently, I can't let everything go!)  Tessa got and unexpected invite to a party later that evening so TJ and I were alone for supper.  So, I took him out to eat!  Another thing, that if you asked me one year ago I couldn't have imagined doing, at least not without hours of internet research and a phone call to the place and a million questions for the server. I still asked the server questions, but we have been here before so I didn't have to research and call!   I guess the fact that we are able to do these spontaneous things without too much extra stress means we have found our new normal- or it found us!  I'll take it for now- at least until the next curveball!

Saturday, September 24, 2011

Strange Gifts

Today I woke up feeling sad and out of sorts.  Last night, we got the news that a former student and current friend of my husband had died suddenly in a car accident.  He was just short of his 23rd birthday.  I happened to be on Facebook and read all of the heartbreaking tributes to his life.  I am sure, those comments will give his parents an element of peace at some point.  The fact that he touched so many lives was even more evident when Tenley came home from the dance with stories of how the news had affected her friends- boys he had coached.  His life was appreciated and he contributed and there will forever be a hole in the lives of all he touched.

 I didn't sleep well last night. I got up several times to check on the kids.   This morning, I heard little feet creep to my door and I could feel little eyes peering at me.  I waited to hear a little voice telling me he was hungry.  Instead, I heard little feet creep back down the hall and a door softly shut.  I kept listening and soon, the voice I heard was making spaceship noises and various sounds of ninja battle.  My sweet little boy was going to let me sleep!  However, I couldn't do it.  I lay and listened to those sounds accented occasionally by the sound of a sister turning in her bed.  Many thoughts were tossing around in my head.  It occurred to me why I get kind of impatient.when people come to me and can't understand 'how' we can handle all the chronic illness in our family   Not because I can't acknowledge the effort- it is hard, especially for the girls right now.   But it would be so much harder not to have the opportunity to handle it.  In that respect, it's a gift.  We are given second chances every day.  Not everyone can say that.  And this is what we try so hard to explain to our kids.  Yes, you have a challenge every day of your life but it's a precious life!

So, with that in mind, I climbed out of bed and peeked in on that little playing boy.  I don't know how long I watched him before he noticed I was there.  And when he looked up, he smiled the biggest, gap-tooth smile and my heart filled.  I could sleep in another time.  But today, I have to get this little one off to a parade.  And I made a vow to myself to remember, at least for today- that even teenage angst is something to cherish.

Tuesday, September 13, 2011

Ups and Downs of Days

I have mentioned birthday parties and how hectic they can be.  Well, on Friday, I opened the refrigerator at 7 pm and there was TJ's lunchbox!  Oh no!  He was still at the birthday party so I couldn't even ask him what he ate.  So, I worried and felt guilty until he got home.  When he finally arrived I said I was sorry for forgetting his lunch.  He said, "It was my fault, mom!  I forgot it in the fridge."  Wow, I told you he was responsible.  Pretty sure if that would have been one of his sisters that would not have been the response!  Anyway, I asked what he ate and he said the teacher called the office and the office called the kitchen and the nurse and they made him a sandwich with his bread and got to eat the same fruit as everyone else.  We are so lucky to have the support at school that we do.  And that extends not only to staff but the amazing parents of his friends.  He is going to another birthday party next weekend and she has already emailed me about ice cream.  And just today I got an email from a mom whose daughter is in TJ's class.  She wants to bring birthday treats that everyone can eat.  So often people think of him and how he can be included that it amazes me.  The doctor asked us today if we felt with the diabetes and celiac if he ever felt left out or "different."  I can honestly say that he has never complained about this happening to him.   If anything he gets far more positive attention.  Especially since recently he was in the hospital magazine.  He is famous!  I just hope that the good will continues.  But since he is currently surrounded by nothing but support- in school, in hockey, in church- my hope is that he will never accept anything else.  This has been the case with Tylie.  Taya, however, has had some negative experiences but I think she is learning to overcome them.

Speaking of Taya, I lost her iPhone this weekend.  This story just goes to show that all of our family dramas are not strictly diabetes/celiac related!  Now, Taya is the "loser" of our family.  By this I mean she literally loses things- a lot!  She called yesterday because she didn't have knee pads for her volleyball game.  She found them AFTER the game on the locker room floor.  That is pretty typical.  I have made emergency trips to the rink with a helmet, one skate, a stick.  Phones have been flushed down toilets and lost in snowbanks.  As hard as she tries, it's just who she is.  I am happy to say this has been improving as well.  She even took the initiative to give me her phone during her volleyball tournament so that I could keep it safe.  So, imagine my surprise when we get home and there is no cell phone in the bag.  Bless her heart, she did not say anything as we scurried back to the school and searched everywhere to no avail.  Troy was on the phone trying to see if the phone company could trace it.  We remembered the Find my iPhone app she had installed.  She logged into the computer and there was a Google map with a blinking light showing her phone- at the mall!  There was an option to send a 2 minute signal and put a message on the phone so she put my number on the message.  Troy jumped in the car, hoping it was on a high school bus that he could wave down.  No luck on the bus but at the second attempt to send a signal we got a call back.  Apparently, when I stood up in the bleachers it had fallen into the purse of a player from another team.  What are the chances?  Lucky for us, they had stayed in town to shop so I met her at the store and all is well.  Technology is amazing, huh?

Technology really is amazing.  We said that today at TJ's appointment as he quickly maneuvered his way through his pump settings to make the required changes.  Today was a big day for him.  This morning started out with a dead fish being flushed down the toilet.   I wasn't sure how it was going to go from there considering he had a doctor's appointment in the afternoon which included a blood draw.  However, we are pleased to say he had the best appointment ever!  He has gained 2 pounds and grown 3/4 of an inch since June.  And, the best part is a 7.4 A1c!  That is down a whole point from when he was not on the pump.  Yay, TJ!  Now, if we could just get those sisters numbers down...

Thursday, September 8, 2011

Birthday Parties

Gluten Free Birthday Cake

I dread birthday parties.  Not just ones they are invited to, but giving them as well.  Girl parties end up with the inevitable drama and someone is mad at someone else.  Boy parties seem to be so competitive and there is always one boy who isn't and gets left out.  Then there is the food planning.  Although this year, Tylie made TJ an awesome gluten free cake.  It was so good that they all liked it better than the non G-free cake that Taya had made for Tessa!  Overall, I was feeling pretty good about how the July/August birthday spree in our family had gone- both emotionally and nutritionally.

Yesterday, there was a letter addressed to TJ.  I knew instantly it had to be a party invitation, which put my stomach in knots.  I am always thankful that TJ gets invited to parties and that people are not afraid to invite him because, frankly, he is a lot of work.  I hate the fact that despite everything we do to make it otherwise, he is 'different.'  He excitedly opened his mail to reveal a replica of a Twins game ticket.  (Really cute actually.)  While he reads the invite for details I am going through freezer inventory in my head- do we have gluten free cupcakes or brownies?  If not, do I have time to make them?  In the freezer there are four chocolate cupcakes with frosting- thanks Grandma!  Then I see the time for the party and the note that they will eat at his house before going to the gym to play.  Oh, great!  I hate these phone calls!  I have to call the parent and get details on exactly what will be served.  Not only do I need to know the carbohydrate count but also the ingredient list.   I know that it is necessary, but the entire time I am talking I am feeling like the helicopter mom from hell!  This time, however, things are looking up because she is serving Taco in a Bag.  This is one of the favorite foods at our house.  As luck would have it, she has a choice of Doritos- which he can't eat- and plain corn chips- which he can!  Okay, one obstacle overcome.  Next, "So, what brand of taco seasoning do you use?"  Lucky again- it's McCormick!  And she is serving water and fruit.  The way we jumped around and hollered at our house after I hung up, you would have thought we won the lottery.  Usually, if it is pizza, I make him a pizza and send it along.  But, really, do you want to be the kid eating the cold, homemade pizza when everyone else gets a hot and gooey Domino's?   This will also be his first birthday party with the pump.  He is getting a ride to the party from the family.  Their house happens to be near my school, so now I have a reason to stop by- I will drop off the gift and his cupcake so he doesn't have to bring it to school.  And, while I am there I can just happen to double check the food and check his blood sugar.  I am sure this will get easier as he gets older and is able to count his own carbs, like his sister's do.  However, as the carb counting gets easier, I fear that the "I have to bring my own food to parties" thing will get very old!  I guess we will deal with that as it comes.  For now- Yeah, Taco in Bag! 

Tuesday, September 6, 2011

Teen Trouble

On Friday I made my first trip to school because TJ's pump site fell out.  Luckily for us, the timing was perfect because he ate his lunch while we made the switch and he didn't miss a minute of recess!  First pump obstacle overcome with little drama.  I was thinking about this today as I walked through the office at the school where I teach and there was a girl and her mom changing her pump set.  I have met this family before at diabetes functions.  We both commented on how reassuring it is to see someone else going through a routine that is only "normal" to us.  It was also reassuring to know that the struggles we are experiencing with our teen daughters are not unusual.   In her case, her daughter had gotten to school and then called her and said, "What happens when I run out of insulin in my pump and there is no insulin in my spare bottle?"   Similar things have happened to us.  As the parent, sometimes I want to be annoyed at the lack of responsibility but at the same time I have tremendous guilt that I hadn't checked that out so we could make the change at home!

We all know, being a teenager is hard.  Developmentally, their brains have trouble keeping things straight and throw in homework, chores and a social life and things are in constant motion.  Now, throw in Diabetes!  Ugh!  They want to be like everyone else.  How can you be like everyone else if you have to stick your finger and program an insulin pump every time you eat?  And how can you remember that when deciding what to do after school or checking out who has the coolest outfit on is so much more important at that moment?  That is the biggest struggle we have right now.  I know that both girls know that taking care of themselves is important.  They are both active, they know how to count their carbohydrates, they eat healthy for the most party, they do an excellent job of taking care of their little brother, they know what to do.  But, do they always do it?  I just uploaded pump info last night and the answer to that question was a resounding NO!  One part of me wants to yell at them- do you not know what can happen to you?  Instead, I am trying to take a deep breath and try to find something they are doing right.  We have used incentives, taken things away, schedules and for a time, they work.  But ultimately, we have to get them to be motivated to do these things without reminders.  As I said to a colleague, I want my kids to learn responsibility and logical consequences but when it's their life and their long term health- it is really hard to find a balance.  So, as the mom my emotions are always in turmoil.  I know I can't do too much or they won't learn on their own.  I know I can't do too little or they won't take care of themselves.  How do we find a balance?  Our diabetes educator is really good at finding one thing each time that they can work on.  It is far less overwhelming and much more realistic for them. And she always points out something positive they are doing which at times is not an easy task!   It is a normal teenage "stage" for those with diabetes.  And, with hormones all over the map, blood sugars will also be up and down.  Obviously, we would all love to have perfect control but she has told me and them that it isn't very realistic right now.  But, we can work on habits and making them good ones.  Checking blood sugar before meals, bolusing for all food, staying active and making healthy meal choices.  Those last 2, I am still working on personally so I guess there has to be a little give!  When I watch them take care of their brother, I know they know what to do and for the most part, they are incredibly responsible about everything- not just diabetes care.  I just have to have faith that they will find a routine that works for them so they can take care of themselves just as carefully.  That doesn't mean I don't nag them about set changes or ask them to text me blood sugars or double check that they bolused if I am with them when they eat.  I can't help it- that's who I am!   I just hope they realize when I am nagging and have that annoyed sound in my voice that it isn't them I am annoyed with- it is this nasty disease!  I really wish I could just take it away, being a teenager is hard enough!

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 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:

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 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.