What’s Love Got to Do With It?*

Last weekend, I was cleaning out the garage and organizing all the toys, tools, and trash.

By “organizing trash” I mean strategically placing those items the kids might give me grief about in the bottom of trash cans.

Who needs broken plastic golf clubs from the Dollar General, a fabric frisbee that has taken on a pentagon shape, or a crusty bottle of bubbles?

Not this mom!

Anyway, as I was cleaning I was reminded of a funny story from years ago.

Ian and I had spent an entire day outside playing “ball.”

Baseball, basketball, football, golf, tennis, lacrosse, kickball, volleyball, bouncy ball, paddle ball, and “Swick”.

(“Swick” is a mash-up of a game of kick ball and swinging. There is a complicated scoring system that only Ian really understands, but the rules amazingly stay consistent.)

Anyway, as we were cleaning up our yard, which looked like a ball pitt that had exploded, Ian recapped how fun the day was.

“We played baseball, basketball, football, golf, tennis, lacrosse, kickball, volleyball, bouncy ball, paddle ball, and “Swick”!

“Yeah, buddy, that’s a lot of ball. It was fun!”

“Yeah, we never do that at Dad’s. Dad doesn’t have any balls.”

~~~~~~~~~~~~~~~~~

*What’s this title got to do with this post??

Writing 101: Day 4 It’s Not Whether You Win or Lose

Ian has always been on the losing team. I am not kidding. Every team he’s ever been on has been the worst. In both baseball and basketball, his team always has the worst record in the league.

This year is different. His team is 4-6, still not a winning record, but not the worst team either.  And they have lost some very close games.  It’s been an exciting season.

SDC19816

Batter up!! I’ve been horrible at taking pictures this season. This is, in part, because I take the dog with me to most games, and it’s hard to manage a camera and a ferocious 10 pound Yorkie.

Since this is the first season with the OmniPod, it was like a whole new ball game. (Sorry, I couldn’t resist.)  The first few practices and games he was dropping like crazy…The second practice he plummeted to 44. Our previous plan of giving him an extra 15g before activity didn’t work anymore.

Talk about frustrating and defeating.  It was just part of the learning curve.

After a little trial and error, we figured out that a temp basal set at 70% is enough to keep him from going low. We have to test him every few innings. It’s annoying to him but he knows that going low is going to take him out of the game for a while, and he sure doesn’t want that!

When Ian was diagnosed, we sat in the ER and the doctor asked him if he had any questions. Do you know what his very first question was?

“Can I still play sports?”

This boy lives for his sports. And honestly, he doesn’t care if he wins or loses. He just loves the game. With his track record, that’s a very good thing.

SDC19806

I love watching him pitch. Look how serious. He tries to plan out his pod placement so it doesn’t interfere with his nights to pitch.

The tournament starts on Tuesday. Is it too much to ask for just one more win?

 

Trust and Friendship

Last night MJ had her first full-blown sleep-over.  I haven’t ever said NO to a sleep-over. She just hasn’t asked.

It is sort of like when she was a toddler, and we used to take nightly walks through the park. We never got her out of her stroller to swing or play on the playground, because we knew once we started, a walk through the park would never be so simple.   (That all ended around the age of 2.)

So, when I suggested a sleep-over for her upcoming 14th birthday, her eyes lit up and she invited 4 friends.  Three were going to spend the night; the fourth girl was only going to stay until 10:30 or so. She had never spent the night at someone’s house. She has T1D.

She is my Ian.

Ian has never been a sleep-over candidate – even prior to his diagnosis.  He doesn’t do well with things like that. He even has a hard time sleeping at his grandparents’.

And now, with T1D, he’s asked a few times, but we’ve always found alternatives to sleeping over. He has whined a few times, “I’ll never be able to prove I can stay all night if you don’t give me a chance!”

True.

But I also know Ian. The anxiety of the change in routine would be enough to literally make him sick and he’d  be home anyway.

Anyway, MJ’s friend was the last to arrive, but the girls welcomed her and were clearly glad she decided to come – at least for a little while.

A few hours in, MJ comes down and said, “Annie wants to spend the night!”

She was followed by a trail of girls…one I hardly recognized. They had given Annie a makeover; they straightened her corkscrew curls and put a flower in her hair.

Annie’s mom brought over her sleeping bag, pillow, and overnight bag. And her Lantus.

I could tell her mom was apprehensive and Annie was maybe a little nervous.  But of all the places in the world, this was a good place to start the overnight adventure.

I smiled as I thought of one of my favorite lines from Ferris Bueller’s Day Off, when the creepy garage attendant takes the Ferrari from Ferris and Cameron: “You guys got nothing to worry about, I’m a professional.”

I picture Annie’s mom saying, “A professional what?

True, Annie’s been a T1D for a year or so longer than Ian. But I get it and I could tell her mom did too.

I kindly said, “Are you ok with this? She’s gonna be ok. I can get up at 2:00 and check her. MJ knows what to do. And I have juice boxes!”

She smiled, hugged Annie goodbye, and walked away.

I don’t think I could have done that so easily.

But, what a milestone.

My heart melted when MJ carefully measured out Annie’s brownie and ice cream, just like she’d do with Ian’s.

And then again, when the girls told me that they are all going to do the Diabetes Walk next fall. They want to form a team for Annie and Ian.

I believe they will make this happen.

The only glitch in this experience…planning a sleep-over on the night we change the clocks and lose an hour of much-needed sleep. The girls watched the time miraculously change from 1:59 to 3:00 on their phones.

I have to trust that it was awesome, because I got more sleep than anyone! I was sound asleep by 11:00!

Happy Dia-versary! It’s Been One Year!

It’s been 365 days since Day 1.

No less than 2, 555 blood sugar tests.

At least 1, 460 shots.

1 trip to the ER for dehydration and ketones.

3 A1C’s that only dropped by a measly tenth of a percent each time.

It’s been a crazy hard and wonderfully bittersweet year. A year of firsts and milestones.

But he did it! We did it!

A year ago, this never seemed possible…that we’d deal with this and be ok.

We’re better than ok.

Being a mom is hard enough. Being a mom to a T1D…unimaginable.

But I’m ok.

And why wouldn’t I be?

I have a daughter who has learned to roll with the punches – both the highs and the lows – to accept the mood swings, to be flexible, to keep me on my toes, to bring laughter when we need it. She is my comic relief, my easy-going girl who truly makes my life easier.

I have parents who are willing to work around our eating schedule, make multiple rest-stops on long car trips, choose the right places to eat, make life feel normal, count the carbs, distract the kids, be quietly concerned, ask questions, make suggestions, but never push.

I have friends who give me their time and lend an ear, from miles and miles away. Friends who’ve come back to me and helped me deal with this latest season of my life. Friends who text at just the right time to bring a smile to my face.

I have a sister who provides the medical advice, the side-splitting laughter, the room to complain, the reminders to breathe.

I have a little boy who is amazingly strong in every way. His puppy dog eyes and his uncle’s charm, his sense of humor, his need to compete, his drive to win, his mad math skills.

I am a lucky mom to be given this strange gift wrapped in a beautiful package.

And someday, probably years from now, the best gift will be a cure. Until then, we will celebrate every year!

Happy 1st Dia-versary, Ian!! I love you!

Perspective

Yesterday marked Ian’s 9-month mark since being diagnosed with T1D.

9 months is the long road of pregnancy.

9 months is also the length of a school year.

9 months can seem like forever and 9 months can go by in a flash.

You’ve been pregnant forever!”

“It seems like you just told us you were pregnant!?”

“May is never going to get here!” 

“179 days to go!”

“I feel like this year is going by too fast!”

It’s all about perspective I guess.

Luckily, perspectives can change.

When diabetes turned our world upside down in January, we had a lot to learn and as things happened, we dealt with them. It was a crazy time of always anticipating and worrying, being anxious, realizing we weren’t prepared, and at the same time , if it’s possible, over-planning.  Diabetes can control your every move, decision, and thought.

But when you are dealing a long-term illness, you can’t function like that forever.  You just can’t. When you realize that something is going to affect the rest of your life, you learn to make it fit into your world.

So it becomes part of the routine and part of what you do. Sometimes you don’t even realize you were thinking about it. It’s kind of like when you arrive at a destination and you are like, “Hmmmm…We’re here already? I don’t even remember driving here?!?”  (Scary, but true!)

Getting Blue right before school started (and having it be one of the most demanding starts to a school year ever) provided enough other “stress” that diabetes suddenly went on the back burner.  I knew I had a good handle on diabetes and now I needed to get a handle on house-training and tackling a new school year.

Yes, diabetes is on a low simmer. I keep an eye on it so it doesn’t burn. But sometimes the pot boils over.

Back in March I mixed up Ian’s meds and this past week, there was another mix-up at his dad’s.  We’ve both experienced that total panic and guilt and have realized that it is really easy to make mistakes.  Mistakes that we will never make again.

When Ian had to consume 250g of carbs to feed 10 units of insulin, and as Ian described to me the next day, “Dad was getting out that huge Glucagon needle and I was like, Uh….what are you doing?????”….you snap back to the reality of diabetes pretty quick.

That is not to say that we are going to let that little mishap wreck the progress that we’ve made.

Because our progress is what is most important.

The next day Ian’s attitude and behavior was extraordinary. I had to run up to his school and give him his shot at lunch because of a schedule change.  As he hurried out of the clinic, he turned back hollered a “Thank you Mom! Love you!” and rushed off to the cafeteria. My heart melted.

That evening he was very sweet, affectionate, and a little clingy. Understandably so.

At dinner he folded the napkins (and taped them all up with scotch tape???) and assembled a fall centerpiece on our kitchen table. He destroyed several of my decorations around the house in the process, but it was a sweet gesture and it will remain there the rest of the season. He asked me to light the candle and he issued a “no elbows on the table” rule, which his 8th grade sister found quite annoying.

candle.jpg

Ian’s centerpiece.

As bad as things could have gone, everything ended up ok in the end.  I believe that it helped Ian have a better appreciation for all that we do for him to keep him safe and healthy. I think that this little scare also made him (really, all of us) see things from a different perspective.  It reminded us all (no matter how busy we are) to slow down, take some extra time and care, and be grateful for every day.

window.jpg

That night I caught Ian and Blue sharing a different view of the yard on a rainy day.

A New Year and a New Attitude!

Back to school! Year 18 for me and 5th grade for this boy! (Taken by 8th grader MJ)

Ian spent one semester of 4th grade without diabetes and one semester with diabetes.  The second semester was scary, exhausting, stressful, and new.

Not only did summer vacation give us time to relax as usual, but the three months off made a natural break between last year and this year.

Last year Ian used to call from the clinic almost every single day, if not twice a day.  He’d call when he was high, when he was low, when he had a headache, when there was an extra recess, when there was a birthday party treat….

And the nurse from the hospital called a lot.

And the school nurse texted me often.

And Ian’s stepmom texted me too.

That’s a lot of phone calls and texts when you are working.  And believe me, I was happy to have the calls. We were sorting things out and learning the ropes, adjusting to each new event and situation as we went.  But with every phone call and text, I was constantly reminded of the fact Ian had diabetes and I would become distracted, flustered, overwhelmed.  I was definitely not at my best at work last year.

Family comes first though and somehow we’ve gotten over that Why-Does-Everything-Throw-Us hump.  Life feels more normal than it has in 8 months.

Ian has called one time in eight days. What an improvement!  That says tons about his comfort and understanding. He understands highs and why he feels like crap. He also knows that there isn’t much I can do for them. (When we eventually get a pump, maybe there will be an easy fix?)

He is never one to have a lot of lows and when he does, he knows what to do. I honestly don’t think he’s had any since school started though.

Ian’s teacher is super sweet (just like last year) and at our before-school meeting, it was obvious she sees 5th graders as responsible young people and wants them to be confident and independent.  (That is not to say that she leaves him hanging out there on his own. It’s hard to explain but she has a trust/respect for them and gives them a chance to handle things on their own. She does student-led conferences if that tells you anything.)

For example, Ian tests in his classroom now rather than going to the clinic every day for snack and unless he’s feeling really lousy he handles things in the back of the room by her desk.  We felt, as a team, that he was totally capable of handling this part of his diabetes on his own.

The school nurse is also making any calls or texts to Ian’s stepmom before she tries to get in touch with me this year.  She works part-time, is more accessible and is equally knowledgable about everything. (I could not ask for a better stepmom to my kids.) This is a huge relief for me and I feel much more relaxed and focused at work.  The first two days were weird when I didn’t hear from anyone, and maybe it sounds a little selfish, (not my intent) but I kind of like it this way. 🙂

Another great thing is lunch. Last year, Ian packed his lunch every day for the entire semester. Every. Single. Day.

And he doesn’t eat lunch meat and he’s really picky, so it was peanut butter sandwiches or peanut butter crackers. Every. Single. Day.  We had to pack exactly 75g every day as well, so they nurse could give him exactly 1.5 units of Humalog.

This year, we have a plan with the nurse where she adjusts his meds  according to his carb-to-insulin ratio (currently 1:25.) We write a little note and throw it in his lunch box every day. He has been able to buy the tray lunch and pack extras. He doesn’t drink milk, so he brings his own drink and then extra fruit, yogurt, protein bar, etc to round out his lunch. He’s still a very picky eater but there are many main dishes on the tray that he likes  (Tornado nachos, popcorn chicken, hotdogs, chicken patties, to name a few) and now he can have a variety of lunches and not just peanut butter sandwiches, which frankly make me want to gag now after making them for so many months.

We have been pretty good about determining the carbs in the tray lunch based on our knowledge and experience, a booklet from the school cafeteria, and Calorie King. Yesterday I printed out September’s calendar and marked all the carbs.  I send a copy to his stepmom and she checks it out and we make adjustments and cross our fingers. I am keeping a copy of all the menus and will probably have things memorized in a matter of a month of so. (Isn’t it funny how carbs are like math facts? It’s just something you memorize. I never imagined it would be so automatic.)

The heat has been horrendous this year.  None of our buildings have air conditioning and it’s now decided to be summer-like with temps in the high 80s (outside and in the classroom.) My room the other day was 84 degrees. Ugh…..

That has messed a little with Ian’s numbers.  He’s been in the land of 200+ a lot and we made a tiny adjustment to his Lantus but we hope when the heat breaks later tonight that things will level out.

I could not be much happier about the start of the school year. After the road we’ve been down, things seem almost easy.

Only 7 Months Ago…

My mom and stepdad are coming over to see us tonight after dinner.

The last time my mom and stepdad saw Ian was when they dropped us off at the airport on Dec. 30th.  My mom’s boss flew the three of us to visit them in Virginia for Christmas. My nephew had been born about a month early so it worked out we got to see him as well.

At that time, we did not know Ian had diabetes.  We found out 5 days later.

Will it be weird for them? Will it be weird for us? The shots, testing blood sugar, counting carbs, the structure and schedule.

As I was making peanut butter sandwiches at lunch I thought how normal it is now to measure out the peanut butter with a tablespoon.  How “every-day” it is to put grapes on the scale and measure the G2 in the little plastic measuring cup before pouring it in a cup.

Our lives have changed so much since we saw them last. I am sure as grandparents it killed them to not be able to be here when he was first diagnosed.

It’s just a funny feeling. It feels like our lives have always been this way.  In reality, it’s only been 7 months.