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.

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.

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.

Talk. Listen. Repeat.

Some people like a challenge. It makes them work harder- try to prove something to themselves or others. I guess I fall into that category most of the time, but recently it's been hard for me to get through the D stuff with a smile on my face and my usual unwavering fighting spirit. The numbers make me angry. The cost worries me. I have lost sleep over the minute details of diabetes too many nights to count.

It's no wonder that the needs of the one person in the center of all this- Noah - the most important person, in fact, get lost in the shuffle. My mind is constantly on numbers, strips, ratios, research, money...
Yes, all that is important and won't go away, but I realized recently that paying so much attention to those details has taken my focus away from helping Noah with the challenges he faces every day. I'm so used to being a cheerleader- encouraging Noah to go with the flow and, doing the whole, "we're not afraid of dumb old type 1 !" thing , that I fail to see that he might be struggling in his own way.

It's time to stop, keep quiet and really listen to Noah without jumping up all full of piss and vinegar wanting to conquer his fears. I might be surprised to find he doesn't want a cheerleader...just a mom.

Words make a difference.

Noah was lucky to receive a TON of mail from us and the rest of our family while he was at camp. He was eager to share it with us, and so as we helped him unpack I paused to read each one. A cute card in particular (from a very close family member) caught my eye and I read the short message of encouragement once...twice...a third time. I couldn't believe what I was reading, as my eyes repeatedly ran across the scrawl. Amid the uplifting message, one phrase had my maternal instinct rising up in a fireball of fury.

Quoting from card: "It must be nice to know you're not the only one with this problem."

Problem. Problem. Really?

Not having enough toll money is a problem. Being stuck on the elliptical machine next to overly sweaty guy is a problem. Lindsay Lohan's appeal and fame is a problem...

This very close family member has been consistently lacking in any desire to learn more about Type 1 from the start, (no matter how many times we explain to her that Noah is on no dietary restrictions, she always plays Food Cop with us) so I shouldn't be all that surprised or expect anything more than ignorance on her part, but this message was written to Noah from someone he's supposed to trust. He's 11. He has Type 1 diabetes, and will continue to have Type 1 Diabetes always. He knows this. He doesn't need negativity and to be told what he's got is a problem.

Banging our heads against the wall.

Yesterday, Noah's teacher (Mr. S.) called to let us know that Noah's been "increasingly difficult" in class. Not getting along with the other kids...throwing full-on raging hissy fits over relatively minor happenings, and being so nasty to one of his friends, that the teacher had to separate them. Mr. S. explained to Noah that he's pushing his friends away by acting like this. Noah's defense is that he's being bullied, and he gets so angry that he loses his cool and lashes out. I told Mr. S. that Noah has told me about the bullying in the past, and my advice to him was to not react like he does, because that's what is fueling the fire for these kids.

Mr. S. says he's not quite sure Noah is being truthful about all this bullying, because he said Noah overreacts and blows things up so much...like the boy who cried wolf. I agreed that Noah can and does overreact, but he does not lie, and told him of a few recent instances of the bullying. Mr. S. was not aware of these, and wondered why Noah didn't tell him about it. I said-" just because he didn't tell you, doesn't mean he's lying." He said he would investigate what I told him. Most of it, he went on to say, is the age...5th grade is tough and all that, and I understand, but what worries me most is that Mr. S. believes Noah is seriously lacking coping skills. I agree with him there. It's like he's so innocent, that he takes everything at face value. He has no "street smarts". He can't recognize when some one's being sarcastic in a mean way, (as kids are known to do ) and can't seem to understand when someone doesn't like him, or doesn't want to be his friend.

I let Mr.S. know that we have talked this through with Noah till we've been blue in the face, and that we feel at such a loss for what to do next. Counseling? More talk? what? I can only give him so much parental advice, and at this point, it seems like it's falling on deaf ears.

My husband and I spent a good amount of time last night going over what we could have done wrong. I feel like we broke our kid. It seems like before diabetes came into the picture, he was doing fine coping with life, he had school buddies and was generally a happy camper. We realized his diagnosis didn't change him...it changed us. We went from letting Noah be this free and easy little boy, to hovering over every move he made. I tried to make everything easy for him, because my thinking was that he had so much to adapt and adjust to already being a person with diabetes. I overcompensated and tried to make the days go smooth for him. I babied him too much. I didn't let him live and learn, like a kid is supposed to. My dad says a kid has to eat a little dirt sometimes. He's right.

So, after some mulling it over, I think some kind of counseling is the way to go. Now begins a search for someone who hopefully has some knowledge of Type 1...not that it's essential, but it may help.