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!