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.

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.

Abandon Ship?

This subject has come up since day one, when the pediatrician sent us into Boston's Massachusetts General Hospital, we've been asked a million times since that day..."why not Joslin, aren't they the best"? My response is always the same "we went where they told us".

Sounds lame, but we were newbies in the world of type 1 diabetes, and being led on a medical leash was actually a welcome thing in a life that felt like it was spiraling out of control at that particular time 3 short years ago. MGH has been good to us. They taught us a lot. Got us through the "boot camp" phase of parenting and clinical care of a newly diagnosed type 1 child. We love the staff there, they are always available to call you back if there's a problem, and we are incredibly blessed and lucky in geography to be a stone's throw from some of the best medical facilities in the entire country. (wait for the big "but")...

BUT, It's an adjustment when the doctor we've been working with, and getting to know is suddenly gone. Being a teaching program, Noah's on his 4th doctor in 3 years. This past Friday, it happened again. When Noah's name was called, it was by yet another "new" doctor. Introductions and small talk were made as we snaked through the maze of hallways on our way to the exam room. Jon, Noah and I took a collective deep breath and entered .

She was nice enough, I'll give her that. But zero bedside manner, and to me- especially when the doctor is working with children- is a huge problem. As she rifled through tons of paperwork, looking for the one with Noah's pump history printed out on it, I could feel Jon tense up as he sat beside me. She positively grilled us, which is fine- we got a weird feeling from the manner with which it was done. Later, over lunch Jon and I would discuss how we felt like we were in trouble, sitting in the Principal's office , afraid to say the wrong thing that would surely result in detention.

I dunno, it just felt bad and uncomfortable. And they didn't DO anything. I feel like when we speak about certain issues or concerns, there's no feedback. It's frustrating because even though we've been in this life for three years,we know there's always something new to learn. That being said, don't you think some new information, or helpful advice would be offered up from time to time? yeah, I thought so too, but it doesn't happen there. It's situations like Friday, and the switching of doctors over the years that have us wondering if a change from MGH to Joslin might do us some good.

I've always been the kind of person that hates to rock the boat, I don't ever want to offend anyone, but this is my kid's health- heck, his LIFE, at stake here. Why not expect the best? Why not leave no diabetes stone unturned? As parents, I feel we shouldn't allow ourselves to get complacent. We're going to get the wheels in motion for the long overdue switch to Joslin. I'd welcome any advice on what to expect from those of you who have had to break ties with a doctor, or switched from one hospital to another.

On a side note, we had a really great time in Boston after the appointment was over. We did the Boston Duck Tours. It's one of those touristy things you have to do at least once. It was the perfect day for it, and it was educational and fun. Noah even got to steer the duck boat!

The reality of it.

Running away from the whole diabetes thing seems so appealing as of late. I'm sure anyone that's been affected by diabetes in it's many forms can commiserate with me. At around 4:30 the other morning, Noah crawled into bed with us, feeling low. Normally, I don't get worried when he's low- we just go through the motions of testing, juicing and re-checking in a robotic sort of way.

This time though, I could hear a whisper of fear in Noah's sleepy voice as my husband tested his blood glucose (it was tough even getting any blood...his fingers were so cold that morning) first once, only to get an error message, and then again. Not one to usually complain, Noah let down his guard down, and quietly exhaled, "I hate pricking my fingers"...

I hugged him close, and reassured him that it's okay to feel that way from time to time, and that we're so proud of him for putting up with all that he does every day.

Noah's frustration over that morning's testing didn't stay with him for long. He followed through with his day with his usual exuberance, and happiness that I love so much about him, but for me, that sinking sick feeling of not being able to "fix" my child wouldn't stop it's nagging. How I wish I could chase diabetes away, protect him from it, or take it on as my own. He never gets a break. His fingers and pump sites always hurt. He constantly has to plan, and put aside the spontaneity of youth. It worries me when the cracks in Noah's diabetes armor start to show. Even though it's been 3 years and counting, I still feel like like a diabetes newbie, and I don't always know the right things to say or do when it comes to helping him navigate life with d.

How do you push through the rough times?