Imagine doing everything you're told. You stick to the rules, learn the tricks, and jump through all the hoops. You do this every second of every day. You do this out of fear. You do it because you are a parent and you have to. You do it out of love.

Imagine doing all that, and watching your most precious blessing, the thing you've been fighting for, and caring for, and loving so dearly slip away.

I don't know them, this family that must feel like their world has come crashing down on them. The recent death of their 13 year old child caused by a rare syndrome due to type 1 diabetes is something that can't be explained away. There is nothing and no one to set blame to. My heart is breaking for Eilish and her family- prayer feels so painfully inadequate, but I do it anyway.

It's cutting right into my mother's heart. All I can do is think of Noah and my God, how will I sleep tonight?

I'm sure, along with so many others, I won't.

Pray.

When Noah was diagnosed with Type 1 diabetes, we felt like our world was falling apart. I remember the doctor's explanation in a vague, dreamlike way. Nothing about what was said is crystal clear in my mind, but the feeling in the pit of my stomach is something I will never forget. Sick, and twisty. Not butterflies but the beating of leathery bat's wings.

In the 5 years since, life has become as normal and everyday as it can be when you're a busy family with the occasional crazy blood glucose or weird A1C result. I was confident that new sense of normal meant I would never feel that bat in my stomach again. As the saying goes, life goes on.

Unfortunately, the news of late has been anything but normal around here. My husband had brain surgery to remove a tumor that was recently found and was causing him to have seizures. The day he was to leave the hospital, we were told by the oncologist that the tumor was a malignant oligoastrocytoma. We were not prepared at all for that outcome. Of course, we knew of the possibility of cancer but it was presented to us as remote by the many specialists visited over the course of 2 months leading up to surgery.

I sat in the hospital room with my husband and cried while the family of his roommate on the other side of the curtain joked and laughed. It's funny the things that stick in your memories. I also remember the overwhelming feeling of being cheated out of a long life with the man I promised to grow old with.

Later that day, they sent him home.

Three days went by, and we shared the news with immediate family. The outpouring of support after coming home was unbelievable- meals were dropped off at our home, cards and phone calls were abundant as were words of encouragement and prayer. We began to feel as though we could get through it.

I had been relying on my mom to hang with Noah during the days I stayed late at MGH, and she was so generous with her time and her help- all while nursing a chronic sore back, so on Jon's third day home from the hospital, it was a nice treat when my mom stopped by the house just to visit and hang out.

We sat and talked. That's when my mom told me that she was diagnosed with cancer during the same week Jon was recovering from his brain surgery. It was her back pain that prompted her to visit her doctor. I learned that while I was at MGH in the morning, my mom was also at MGH having tests and meeting with specialists. Then, she would drive the hour back up North to be here at the house when Noah got home from school.

I sat there, completely ripped apart and crying thinking of how my mom was alone when she learned that cancer invaded her lungs, liver and spine.

That was 2 months ago. Lots of things have happened since then. Jon has started radiation therapy and is at the halfway mark. Mom is doing chemotherapy, and is tough as nails. Noah took the news very hard at first, but over the last few weeks he's been doing better.

The truth is, it feels like living in the Twilight Zone. There are good days and shitty days. Despite feeling like the rug has been pulled out from under my life, I refuse to sit in the corner and cry. The support from friends and family has been so uplifting and has proven to be incredibly healing.

Who knows what will happen in the next year, month or even day. Please take the time to tell the people you love just how much they mean to you. Take care of your health. Go to the doctor if something seems "off".

And please, pray.

I don't even know how to lead into this story, so I'll just blurt it out. We've been going through a lot here at our house lately. We recently found out that my husband has a brain tumor. His team of doctors are confident it's not cancer, and that they will be able to remove most, if not all of the tumor. He did a week-long stint at MGH in Boston for extended EEG testing a couple weeks ago, and now we wait for a surgery date. During this time, Noah has had some crazy blood sugars and I'm pretty sure the stress and worry about what's going on with his dad is a huge contributing factor, so I'm trying my best to be extremely positive.

But really? I feel like a swimmer caught in the undertow. I honestly don't know how to take on this much.

I don't know how much time I'll have to blog, but I know it helps to have a place to vent it all, so I may just be a little blogging machine. We'll see.

site change

Last Night at our house...

Me: assume the position, kiddo. Which side?
Noah: the right, this time.
Me: you ready?
Noah: not yet...(deep breaths)



Me: ready now?


Noah: hold on...(a few more deep breaths)...okay. OW!
Me: honey, I'm sorry. (eyes filling up) I'm sorry you have to always do this crap.
Noah: It's okay. I have to do it because diabetes just came and got me.

Feeling the pinch

Parenting a child who has type 1 comes with all kinds of challenges. A tough one is identifying with how a high or a low must feel to Noah, because neither me or my husband have diabetes. Noah experiences some symptoms of a low blood sugar that I can see readily : shaky hands and pale, sweaty face. How he feels on the inside is a bit of a mystery to me,and although he's tried to describe the "cruddy feeling" that washes over him, it's not something I can really relate to.

Today, I got to experience a small taste of that cruddy feeling for myself. Since July, I've been seeing a nutritionist to get my weight under control. I've been doing pretty good, too. I've lost 30 lbs. so far, and have about 20 more to go before I reach my goal. Because of the weight loss, my body is a little out of whack- I used to always be hungry and I was told that it was because I constantly snacked and grazed during the day, keeping my blood glucose on the higher end of the scpectrum.

Now that I eat normally, my body no longer craves the constant flow of food, and I'm no longer always feeling hungry to keep up with that demand.
The problem is, even though I'm eating my calories for the day, I don't feel hungry enough to snack between meals at all. That caused a problem for me early this afternoon, right before lunch. I felt shaky and pretty cruddy. I couldn't think straight and became panicky. I wondered out loud; "If this is only half of what a low feels like, it SO sucks".

I grabbed a clementine off the counter, scarfed it and sat- staring at the clock on the microwave a full ten minutes.

And then I did something out of curiosity. I went to the D-Drawer and grabbed Noah's spare test kit and used it. 82 mg/dl.

I guess it's not bad for an adult, right? But all I can think of is that reading came after I ate the clementine, so I wonder what it was before?
I also can't get that feeling of confusion and anxiety out of my head. It was unpleasant and uncomfortable. I imagine my blood sugar wasn't all that low to begin with, but now I see a tiny bit how Noah (or anyone else with diabetes, for that matter) feels when a low starts. I'm amazed at how anyone going through a low can even function enough to go through the motions of a blood glucose test, let alone rummage around for something to treat the low afterward.

I'm also amazed at the fact that most type 1's test 10 times a day, because my pinky finger still hurts from the lancet. (yep, I'm a baby) I don't know how you guys all do it...all day...every day. Yeah, I got a small taste of what it's like, and it made a big impact.

hold on tight

this might be the most adorable thing ever.

Health care plan woes.

My husband's employer brought the hammer down and informed us that they are dropping Tufts Health Care...which of course is the insurance we have. It's also the insurance we love. The coverage has been great- we've never had to pay for an insulin pump, our copays are low, and I actually like talking to the helpful staff at member services (God knows they've heard from me enough over the years).
Now comes the daunting task of reviewing insurance plans. I have 3 choices- all plans offered by Blue Cross, Blue Shield.

A side note: Our dissatisfaction with BCBS is the reason we switched to Tufts in the first place. BCBS sent an outrageous bill totaling upwards of $10,000 to us after the birth of Noah, claiming we had to pay out of pocket for a c-section and 4 day hospital stay. The reason? They had no physical proof of my admittance to the hospital. Seriously? Hey, this baby here isn't physical proof enough for ya? True story.

Ok, so needless to say, my expectations that any of our options is going to offer us a vast improvement over what we currently have are lacking. There's also this scary feeling that I'll miss something, and be stuck with a plan that could possibly hurt Noah health-wise. I've heard so many stories of people with type 1 diabetes fighting with their insurance companies over coverage. What's going to happen when Noah's doctor wants to try a CGM and insurance says "no"? I wouldn't back down from a "no", but I'd rather not have to fight over it in the first place.
I understand and appreciate that we are VERY lucky to have any coverage at all. I want the best possible everything for him, and honestly, I don't want to screw this up.