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.
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.
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.
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.
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.
Noah busting a move at Dance NightNoah is now a camper. Diabetes camp, to be specific. Being his first time, we had no idea what to expect, but it's been the talk at the dinner table here at our house for months now. Wondering what the cabins will be like, and where all the other kids will be from? Will the food be good? What about the weather? Oh, the weather. The darn rain that has been plaguing us here in New England for the better part of a month straight put all the other worries to shame. Well, all the crossing of fingers must have paid off, because Sunday when we drove down to the camp, it was a gloriously sunny, warm, and DRY day.
No Rain.
We ambled up to the office where we could see counselors and kids milling around...some with pumps and tubing precariously hanging out in the breeze...some not. I looked at Noah, and saw his smile of understanding and recognition. Even as we went through the check in process, and he got to know his cabin mates, you could the bonds of familiarity forming.
After saying good-bye about 100 times, and taking the long drive home, my husband and I sat in our too quiet house wondering if Noah was doing ok. We recapped the day, and talked about our observations. My husband put it perfectly when he said this to me:
"Seeing Noah today at camp, reminded me of that Blind Melon video. Remember the one with the little bee girl? She danced and got laughed at...went all over the place trying to find where she fit in. Finally she found other bees doing their dance, and she was so happy. That's kind of like Noah today at camp."
Noah has found his bees.
And since I have nothing of great importance to write about lately (I've been in a funky, blue state) here we go with the iPod random shuffle list thing. I did 30 just to be different, and with music, more is better. :)
1. Nights in White Satin- Moody Blues (haunting and pretty at the same time)
2. I believe in Love- Dixie Chicks ( I do!)
3. Some Days are Better Than Others -U2 (some days you can't stand the sight of a puppy)
4. Break on Through- The Doors
5. Cry Me a River- Justin Timberlake (he's my guilty pleasure!)
6. Please forgive Me- David Gray
7. Drive in Drive out- Dave Matthews Band (one of my favorite live bands ever)
8. Runaway- Bon Jovi (now, where did I put my Aqua Net?)
9. White Trash Wedding, Dixie Chicks (this is a great song to request at weddings)
10. Bathwater - No Doubt
11. Got To Give It Up- Marvin Gaye (so grooovy)
12. Freedom '90- George Michael (remember the video with all the models and no George Michael? That was a big deal back in the day)
13. Hallelujah- Rufus Wainwright (this version is my favorite. I have such a soft spot for Rufus.)
14. Red Rain- Peter Gabriel
15. Other Side of the World- K.T. Tunstall
16. Dancing Days- Stone Temple Pilots (from the Led Zepplin tribute album.)
17. Finale (from Harry Potter POA soundtrack) John Williams
18. I Am the Walrus- the Beatles (sitting in an English Garden waiting for the sun...)
19. Let's go Crazy- Prince (this song makes me dance around my kitchen like a nut)
20. Walk on the Ocean- Toad the Wet Sprocket.
21. Vertigo- U2
22. Ice Cream- Sarah Mclachlan
23. Music - Madonna
24. Turn it on Again- Genesis
25. Gossip Folks- Missy Elliot (I don't like alot of the newer rap, but Missy is one exception)
26. I'm Shipping Up To Boston- Dropkick Murphys
27. What's Up- 4 Non Blondes
28. Everlong- Foo Fighters (my favorite FF song. I love the video with Dave Grohl's big hand.)
29. Dancin in the Light- Entrain (fun East-Coast band!)
30. I want It All- Queen (I cannot stress this enough- Freddie's voice is amazing. There is no match for it.)
That's it! I don't know what it says about me, other than the fact my musical taste is completely all over the place.
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.
The Boston Channel
I have no way to embed this, so bear with me and click on the link above to view the video.
I saw this story on my local news last night, and I'm not surprised to learn about the large clusters of Type 1 diabetes in certain areas at all. I for one, don't think it's a coincidence that these kids are grouped together, and I absolutely believe that something in their environment has been the " type 1 trigger." What that is could certainly be different for Noah than for these kids, but I feel in my gut that it's always caused by something...it doesn't just happen out of nowhere. I'd love to know everyone's thoughts on this.
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.
Playing house was something I did with the other little girls I grew up with, and we played for hours. I was always the "mom". I loved it, and looking back, I think that instinct of caretaker was something woven into the fabric of me from the start.
Being a wife and mother, and being good at it is something that's very important to me. I always worked full time, but when Noah was born, it was so hard for me to leave him with daycare every day. I cried most mornings during my commute, and most nights, I crept in to his dark room to lean over the crib to kiss my already sleeping baby good-night. I missed him terribly. I became a stay at home mom not long after Noah turned two.
I loved being home, and taking care of my family. It was fulfilling to me- just being there, ready to offer comfort, food, a laugh, or company whenever they needed me. To me, being needed meant I was important. I worked on decorating our first house. I crafted, painted, cooked, and threw parties. If Noah's class needed cupcakes for a party, I volunteered. A friend needed a babysitter? Me again. I earned the good- natured nickname "Martha Stewart" from my family, and made good friends in the neighborhood.
The most important thing I did not do? I didn't notice when my identity got right up, and quietly walked out the door.
I thought being a good caretaker meant giving every ounce of myself, or else it would make me look selfish. Therefore, I rarely did anything for me. It got even worse after Noah was diagnosed with T1, because this sense of "nobody can take care of him like me" swept over me like a hurricane. Diabetes naturally became the summit to the mothering mountain I climbed up and down every day.
Unfortunately, trying to be all things to everyone took a physical toll on me. My weight had always been an issue since before I got married, and it fluctuated every time a big life change came knocking. I didn't exercise regularly. I didn't eat anything that would be considered healthy. Pretty, girlie clothes were not something I would choose for myself. I opted instead for baggy, shape concealing sweats. I felt invisible, and rightly so, because that's kind of what I created for myself.
About a year and a half ago, after almost a decade of feeling blue, tired, and generally shitty all the time, I agreed to go with my friend to the gym. It was the first step to making some huge changes in my life. I got stronger, and more confident. I started to care about me for the first time in (I now realize ) my whole life. I learned it's okay to say no to some things. More importantly, I learned to say yes. Yes to new experiences. Yes to life.
Above all, I have learned that to be able to be the very best wife and mom I can be, I've got to be caretaker to myself first. After that, all the good things fall into place.
My last post came just before Thanksgiving. A busy time of year for me and my family. I thought finding time or energy to blog would be rough, but I never intended to be absent for this long. Blogging blahs aside, I'm ready to put fingers to keyboard once again with a brief recap of major events since November 20.
Thanksgiving:
2 vegans and 8 meat-eaters here in my tiny dining room.
2 dogs and 2 cats running amok, too.
Yummy sake brought by brother in law (kanpai!).
Noah's blood sugars at near-perfection all day, despite all the delicious and savory food and sweets.
Guitar Hero until the wee hours...YOU ROCK!!
December 12-18, 2008:
Ice Storm overnight.
Woke up at 2:30 a.m. to the sound of the transformer on the pole across the street exploding.
No power anywhere in practically the whole state of New Hampshire.
My neighbor and I loaded our boys in the car and drove about 20 miles round trip for coffee.
The amount of downed trees and limbs and damage was just unreal.
Pretended to be "pioneer women", cooking on the grill, lighting a fire in the fireplace to stay warm, etc. It was fun...the first day.
By the next day with no power, a cold snap had settled in, and it was unbearable to spend any time in my home.
Luckily my aunt and uncle a few streets over have a generator, and my mother came to help me wrangle all the diabetes supplies, clothes and essentials I needed for us to spend the night over there.
That one night turned into 2.
Did I mention my husband is a Verizon guy? I didn't see him for days, on account of all the repairs they needed him for. Plus, he spent the nights in our house (yes, he's crazy!) because he had heard reports of people looting copper plumbing pipes out of homes that were vacant due to the outages.
On the 5th day without power, my mom who lives across town, got hers back!! We then moved in with her for 2 nights.
I returned to my home every day, so I could make sure our pipes hadn't frozen, or that no one broke in to steal the stockpile of Christmas goodies I had bought up until that point. On one visit, my house was 37 degrees inside.
On the 7th day, I called my neighbor to see how she and her family were hanging in there, and while we were on the phone, the lights came back on, and I hightailed it back home as fast as I could.
Christmas:
Christmas Eve was wonderful. The annual party at my cousin's home was filled with all our tales of survival during the outage, and how grateful we all were to have our power back.
Jinxed.
At about 3 a.m. on Christmas morning the power went out. again.
We made the best of it, and even without the lights of the tree, we did have a cozy fire in the fireplace to enjoy.
My father in law showed up with a portable generator~ Christmas Miracle~!!!
Noah wins the award for the most patient child in the Universe...he got a Wii, and had to wait until the power came back on at 4 p.m. to try it out.
New Year's Eve:
Snow all day.
We hosted my 2 brothers in law, their girlfriends, and a few good friends.
Got Chinese and Japanese food from the place that gives you free sake bombs while you wait.
We donned funny hats and played many raucous rounds of Pictionary Man, with lots of whoopin and hollering.
The girls won! (Marie Antoinette, suckah!)
Noah was allowed to stay up to ring in the New Year with the adults.
The rest of us stayed up way too late, drank and ate waaaay too much, and had a blast saying goodbye to 2008.
So, that's where the past couple months have gone. Thanks to Rebbecca for posting the comment that made me realize how long it's been!
