Speed Testing

Maybe it’s just Ian’s personality but he thinks checking his blood sugar takes “FOREVER.”

Especially if he is playing outside or if he is high (then everything is a power struggle).

Tonight we were getting ready to go on a bike ride about two hours after dinner. Since he’s been running more in his range lately I am anticipating some lows in the near future. (I honestly don’t remember the last time he had a juice box.)

So I suggested he test quick before we left so he/I wouldn’t have to worry. (He asks “What if I’m low?” all the time.)

He gives me that sigh and eye roll and says “It’ll take forever.”

I challenge him. “Time it on your watch.”

I emptied the string bag right there in the driveway.

Test strip.
Lancets.
Oops spilled a few.
Alcohol wipe.
Prick.
BEEP

131. Impressive number.

Even more impressive? 52 seconds from start to finish. (Would have been less had I not spilled the lancets!)

Ian couldn’t deny that was indeed fast but it’s his nature to prove a point and win a challenge, “Yeah, well next time it will be slower….or faster… (His eyes light up). Hey, how fast do you think we can do it next time?”

That’s my boy…

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Independence Day!

Happy 4th of July!!

Today marks the 6th month mark since Ian’s diagnosis.

Half a year already?

That doesn’t seem possible. And the same time, sometimes it feels like half my life.

And then I realize it’s the rest of Ian’s life.

I’ve been thinking a lot about this milestone as July approached….and actually, all the milestones of a little boy who is growing up.

Diabetes has been a power struggle for Ian. The loss of control as has probably been the hardest thing for him.

Here he was, on the verge of being more independent, making choices, having a little freedom, and some small privileges and he lost control over the most personal thing – his body.

Never mind the clothing choices he still makes, the games he chooses to play, the friends he wants to be with, and the daily decisions.

He still has choices about his food, but those choices are ultimately controlled by diabetes – when he can eat, how much he can eat, what he can eat, when he has to test…

This really hit me the other night as I was tucking him in, “Don’t worry, Mom. When I wake up and I start getting hungry, I’ll wake you up.  But I’ll try to let you sleep in some.”

The mere fact that he can’t quietly get a bowl of cereal or make a Poptart without me (and medicine) is just not fair.

A 5th grader should have that freedom and feel that independence.

Yesterday he and I took an early morning bike ride and I let him lead. (Usually that is M.J.’s job but she was still asleep when we left.)  He was so excited to choose the route and the competitor in him kept pressing on, making the ride longer and longer.  We talked the whole bike ride about everything under the sun and when we got home and mapped the route on the iPad, we were shocked to see it was 5.5 miles – our longest ride of the summer.  He was so proud and if you know Ian, this will only make him up the challenge and try to ride farther the next time.

Although it was only July 3rd, I found it fitting that the day before his half anniversary we celebrated his independence.

(Today also marks the day that I break free from the “Thoughts” title on every post. It’s more than thoughts about diabetes, it’s our life.)

Thought #51: It’s just background noise.

Five months ago today, Ian was diagnosed. Five short months ago…not even half a year.

And our life has changed in so many ways  because of diabetes.

The greatest thing is that finally, I feel like diabetes is not the only thought running through my head. It is not the focus of every moment. It is not the first thing I think of in the morning.

It does not make Ian cry.

It does not limit our outings or our experiences.

It is just background noise.

It is overshadowed by laughing and singing, by awesome plays at baseball games, by a 1st place ribbon for being the fastest 4th grader on Track and Field Day.

It has a quiet presence in our day-to-day activities.

It is always a factor but no longer center stage.

It is not in control, but something we control.

At baseball.

At school.

At mealtimes.

At bedtime.

On bike rides.

On the trampoline.

While making the grocery list.

While planning an outing.

It has all become second nature.

Thought #50: Our first report card

As we anxiously awaited the first three-month appointment, one thing loomed…his A1C.

On Jan. 4th, his A1C was 12.6.

By April 24th, 8.7!!

We are doing something right! In fact, we are doing a lot of things right!

Thumbs up from the dietician who deemed us “Proficient in Carb Counting.”

A gold star from the endocrinologist who gave us the green light to start learning about insulin pumps.

Praise from Ian, “Wow! We ARE doing a good job, mom!”

Thought #49: Life is full of unavoidable disappointments.

Like any parent, I want to protect my kids from disappointment. This seems even more pressing now.

Ian’s already been hit with diabetes. I don’t want him to feel any more stress, or pain, or sadness or even mild disappointment because, honestly, and maybe I’m being dramatic…I feel like it’s Just. Not. Fair.

When his favorite teams loses in the NCAA tournament.

When it starts raining right after we go outside to play.

When I burn the last Pop-tart on a Saturday morning.

When he can’t have the Star Student cupcake on Friday afternoon.

When his basketball team loses with a buzzer-beater.

When people let him down.

When he loses people who are very special to him.

When people break his heart.

As a family, we have suffered great disappointment and loss in the past three months and as a mother, I would do anything to be able to put a giant bubble around my kids. Shelter them from any storm. Build a wall to block the bad guys.  Make every day a sunshiny day.

I know that’s not realistic. And I know that I can’t control every aspect of his life.

But I try. I try really hard. And I know I’ve got to snap out of this. I’ve got to let life happen to him and teach him how to deal with the unavoidable disappointments life throws his way.

Thought #48: Hospitals are different to me now.

Fortunately, my experience with hospitals has been limited.  The two times I gave birth (and many premature labor visits) and a few other isolated incidents.

My worst experience in a hospital was the weekend Ian was diagnosed.

Since that weekend, we’ve been back to that same hospital 3 times: once for a follow-up, the initial visit with the doc about celiac, and then his procedure earlier this week.

I find the hospital daunting and comforting at the same time. How is that possible?

It’s a cheery beautiful hospital, except for the ER which is kinda scary, and we’ve had nothing but excellent care there.

That hospital is the place we learned about Ian’s diagnosis and medical needs.  It is where I cried a whole lot of tears and where I had to be brave for my little boy. It is the where we learned how to provide him with care he would require for the rest of his life.

Since he was diagnosed on a Friday night, it was very quiet and slow in the hospital that whole weekend. All the offices were closed. That weekend it was just parents and sick children and the people who cared for them.

After Ian’s procedure on Thursday, he rode home with his dad and step-mom and I found myself walking to the cafeteria. First I had to make a trip to endocrinology which was across the hospital in an adjoining building.  As I made the trip over and back, I realized that I was walking through the hospital with ease and confidence. I was familiar and comfortable in my surroundings.

And as I passed many families and children, I wondered to myself what their reason was for being there? Was it just a check-up? Are they awaiting test results? Are they being treated? Receiving therapy? Is their condition fatal? Will they be ok? Is this the first time they’ve been here?

I saw each child and each parent as a reflection of Ian and myself.

I felt an odd connection and I weird range of emotions.

I felt sympathy and I felt empathy. I felt sadness and I felt hope. I felt shock that this many children needed medical care and I felt grateful that it is available to all of us.

The weekend of his diagnosis, the hospital cafeteria is where I spent my “down time” – what little we had. Whether it was for a meal break or to give his dad’s side of the family some privacy, I would head to the cafeteria. I sat and read the pamphlets and books they gave us.  I answered text messages.  I ate soup and drank coffee.

The cashiers were always so sweet, as if they could see the pain and worry in my face and every time when I checked out I would think, “How many mothers do they see like this every day? Does it make them sad? Is that why they seem so gentle and kind?”

So before I left the endocrinology office, I stopped in the cafeteria to get some coffee and a meal to go. Part of me wanted to sit and eat right there, in a place that I knew and felt comfortable in.

As I checked out, I felt an increased sense of confidence and hope. I was back, 2 1/2 months after the first fateful weekend and I was more knowledgeable than ever and armed with the skills I needed to care for Ian.  Ian and I had survived 2 1/2 months of diabetes, he was improving and adjusting,  and I was also on the mend.

 

 

 

 

Thought #47: It’s not fair.

Tomorrow Ian goes to the hospital to have an endoscopy to determine if he has celiac disease as well as Type 1 diabetes.

It’s not fair.

We have to be there at 6:30 a.m. and the hospital is almost an hour from here.

It’s not fair.

If he has celiac, he’ll be the one kid out of ten who has both Type 1 diabetes and celiac.

It’s not fair.

If he has celiac, he won’t be able to eat his favorite foods. He’s already limited on how much of those foods he can have and he’s a picky eater. And he loves his grains.

It’s not fair.

He will have to go back into a room with a nurse and doctor he just met and lay down and go to sleep with a “cool Star Wars mask.”  He’s a smart kid and he won’t buy it. He doesn’t even like Star Wars.

He’s scared and he’s angry. And I don’t blame him.

It’s not fair.

I’m preparing for the worse.

It sounds pessimistic but at this point, it’s my coping mechanism. I’m assuming he has celiac disease. In my mind, I am telling myself he does.  That way if he does, I won’t be crushed.

We won’t know until sometime next week. I pray it isn’t on his sister’s 13th birthday if it’s true. I can’t ruin her day. I can’t let it take away from her. She needs a special day all about her.

I hate the thought of telling him. It kills me to think of how we will break it to him. And how it will change things once again.

It’s. Not. Fair.