How I lost my temper

I had a mini-meltdown the last time we visited the endo with Noah. I've been in and out of varying degrees of pissyness in the couple weeks since. The visit started normally enough. Check in. Weight and height. Hand over the meter. Small talk with the nurse and off to the room.
When the doctor came in, she told us that there was a problem with downloading the information from the meter...great. I have a log book for school, and one for home, and wouldn't you know it- the school book is in Noah's lunch box at home.
So we go into pump history, and scroll through all the BG history. As I'm reading the prior 2 weeks of blood sugars, the tears start welling up in my eyes for no reason. I push it away, and keep scrolling. There are obvious issues during certain times of the day that show up to the doctor as trends once it's all on paper.

Then, the questions start, and I feel like she's grilling me. Her line of questioning was completely normal, but to me, it felt like I was under a microscope being scrutinized to death. I struggled to keep it together.

My frustration reared it's ugly head when she asked me if I had any idea what could be causing Noah's lows before lunch. I quickly shot back, "I don't have a clue- your guess is as good as mine. I mean, really, what worked for us yesterday, doesn't work for us today. Why can't things just work they way the stupid formula says it's supposed to? I'm sick of being wrong all the time"!!!

Not pretty at all. The doctor just stared at me, and offered nothing. She contributed no words of comfort or support ,which I needed to hear so badly at that point. Instead, we just stumbled through the rest of the visit.

In the end, we got some good advice and words of encouragement from the department chief (who was fetched quite quickly after my bout of verbal diarrhea). Turns out, puberty is showing the first signs of life, and Noah's BMI has increased, making his insulin needs different. I don't know why these changes have bothered me so much this time, because in the past, they've always been taken in stride. Maybe I need to let go and chill a little. I can tell you , we won't be seeing that doctor again. Something about her manner makes me feel like I suck at life, and I don't need that every time I go there.

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!

Raise Your Voice for Type 1 Diabetes

Noah's diagnosis day is a blur. Sure, I can go back through loads of paperwork to find the exact day, but off the top of my head I don't know the exact date of diagnosis. I think it's better that way. It's not a happy occasion, like a birthday or wedding anniversary. It's a day I'd love to bury in the back of my mind. Impossible. It's the day I thought my child would be taken from me. It's the day that a cloud of despair fell dark and heavy over our lives. Yes, most details of that day are fuzzy- but a few stand out clearly in my memory and if I close my eyes, it's like watching it replay on a movie screen...

Spring, 2005

In the morning Noah is crying. He comes into my room and tells me he's wet the bed again. It's the third time this week.

More, water please mom? I'm so thirsty.

Our good friend mentions the word diabetes, after we told him that Noah's been having accidents. I call the doctor the next day and we go in for tests.

The pediatrician calls us early in the morning, telling us to go directly to Boston, and that Noah will be in good hands.

Sitting in the cafeteria, all I could do was stare at Noah's hospital bracelet.

I bought a notebook at the gift shop, and filled it that day. I still have it.

The realization of what we were up against when they tested Noah's blood sugar the first time. He didn't just cry. He flipped out. It was too much for a little kid. It was too much for us. I wanted to scoop him up and run away.

I didn't cry.


That's what I remember most about that time. I was too busy learning and doing what would keep Noah alive and well and healthy.

I remember another day, too. A better day. The day when I realized that we are doing all right by our son. It was in the summer. Mere months after his diagnosis, and I overheard him explaining diabetes to one of his cousins. "I wish I didn't have it, but it's no big deal", he said.

The tears finally came, and with them came a kind of peace - a knowledge that everything would be ok. That diabetes is strong and stubborn, but it is no match for what we can dish out.

Faith and Science

Most of us have heard this recent news story about parents choosing prayer instead of medical treatment. It was a topic of our dinner conversation tonight. I believe in the power of prayer, but as my husband put it, you have to pray and have faith but "meet God halfway". It reminds me of a story I 've heard alot over the years:

A flood came and a man had to climb onto the roof of his house. As the waters rose a neighbor in a rowboat appeared, and told him to get in. "No," replied the man on the roof, "the Lord will save me." Then a firefighter appeared in a speedboat. "Climb in!" shouted the firefighter. "No," replied the man on the roof, "The Lord will save me." A helicopter appeared and the pilot shouted that he would lower a rope to the man on the roof. "No," replied the man on the roof, "the Lord will save me." Eventually the man drowned and went to heaven, where he asked God why He hadn't helped him. "I sent a neighbor, a firefighter, and helicopter," said God. "What more do you want?"

I can't imagine the pain and sorrow these parents must be going through, but if there ever was a time for prayer, it's now.

How did the accident happen?

Yesterday, as I stood in my kitchen chugging water after just getting home from the gym, the phone rang.

My stomach did a little flip-flop when I glanced at the caller ID, and saw the school nurse's number on the screen.

Apparently my son thinks he's Evel Knievel and fell off the monkey bars while doing a "stunt". The nurse said that even though the cut on his ear was not large, it was still bleeding , and was deep enough to possibly warrant a suture.

Why do these things always happen when I'm completely disheveled??- at least I wasn't still in my pajamas. I showered (barely) and ran to collect my son. He was grinning from ear to ear as he told me of his incredible acrobatics, and the patch of ice that foiled his perfect landing off the monkey bars.

I tried calling the doctor's office, while simultaneously driving there, and they were at lunch. Noone was in the office (how can that be??) so my only option was to just show up.
We ended up in the waiting room for an hour. :P

Our doctor patched him up...no stitches were needed. He asked Noah how the diabetes was going , and if he liked his pump- and that was it. Took all of 5 minutes. He has some steri-strip tape holding it closed , and he can't get it wet for 4 days. I'm wondering how he'll wash his hair?

I'm glad he's okay, and it wasn't a broken bone or something. His sense of humor is completely intact, as evidenced by his comment on the way home:

"I'm like Van Gogh, now."