Sunday, April 14, 2013

Caught in a T1D Back Seat Driver Tug of War

We are absolutely brand new at this. It doesn't matter that the diagnosis was an entire month ago. We're definitely newbies. On Diagnosis Day I felt like:
Easter Bunny brought a Hello Kitty Hat
but NOT a chocolate rabbit
I was cruising along at highway speed,

when suddenly, I looked around, found myself in an unfamiliar city,

and then, someone handed me a map,

but they wouldn't let me pull over to look at it.

I just had to keep driving, and try to navigate as I went along,

meanwhile, I was still dodging other traffic; checking my speed; and keeping an eye on the fuel light.  (I think fuel is an analogy for groceries!)

I've been so thankful to have already found dozens of other parents (mostly moms) of T1Ds, lickety split!  A handful of friends contacted me, almost immediately, in the very first hours and days, and connected me with friends of theirs who also have a child with Type 1 Diabetes.

Additionally, I myself, sent an email from the hospital to the one mom in our homeschool community who has a son and husband with type 1, and she was warmly supportive, though wistful that there was another among their numbers.  So many people have been so graciously open and generous with their time and support, that I've even felt overwhelmed occasionally.  My sense of obligation to respond to Facebook messages, texts and emails has at times left me with pangs of guilt… but not for long. My first obligation was to Eleanor.  So that was that.

But here's the thing: I've noticed another source of tension, and this one took me a bit by surprise.  I have found that some people who have been living with type 1 diabetes for a long time, are very quick to make a judgement on my conservative choices regarding her care.   They are opinionated back-seat-drivers, interjecting their idea of a better route; telling me, "You're doing it wrong."   Perhaps they are so concerned about common misconceptions about T1D; they are so hungry to prevent fostering those misconceptions, that they are insensitive that I need to get up to speed.  They seem to have forgotten how cautious and careful a parent of a newly diagnosed child wants to be.  They want me to take the road at top speed, but I don't know the twists and turns the way they do, so of course I hit the brakes.

In my first blog post, I mentioned one of the things about which I am sad, is that Eleanor wanted a chocolate bunny for Easter, but that she didn't get one.  Following that post, I had a handful of messages from my newfound peers.

What they said, shrilly, was, "She CAN have the chocolate rabbit!"

They have experience and they forget or don't care that I don't. They are pulling me one direction, it's like peer pressure, while I frantically try to understand and follow the clinic's instructions, which pull me in another.  The experienced patients and parents want so badly to prove to the world that T1Ds can have a chocolate rabbit, that they'll shove the chocolate rabbit down my throat at all cost.  They certainly don't want me to suggest that T1Ds can't have the chocolate rabbit (not that I did).  They themselves struggle and vacillate between telling me, "You should seek the advice of her endocrinologist," and telling me, "damn the torpedoes, and snarf that chocolate rabbit!"

I want to point out that my blog post never said "Type 1 diabetics can't have chocolate rabbits,"
I hate the stupid advice I get over and over again to "just fit it into her meal plan."
Let's ponder that.
At Easter, two weeks post dx, Eleanor's meal plan looked like this:

Breakfast 35 - 40 g carbohydrates
Lunch 35 - 40 g carbohydrates
Snack 15 g carbohydrates
Dinner 35 - 40 g carbohydrates

See's Candies makes a very popular 10 oz. chocolate rabbit.  Let's take a look at the nutrition facts for 1 oz of milk chocolate candy (please note, the rabbit would be 10 times the amounts on this label!)

So, you following so far?  The entire 10 oz. rabbit would be 170 g of carbohydrates.  So, surrrrrrre! She can eat it, no problem! Of course, she'll have to skip all her meals and snacks for the entire day AND breakfast the next day to make it fit in her meal plan.  Telling me that she can have it, while not, strictly speaking untrue, sure as hell isn't very realistic is it?

Eleanor's pediatrician sent a basket of 
cookies and candy after her hospital stay. WTF?
Hmm, okay, so, that won't work, what if we divvy it up over several days?  Well, we could do that, but even if she had a wee bitty smidge of it, each day, as her 15 g-carbohydrate-afternoon-snack, it would take 12 days to eat it all.  Let's not forget that if her snack consists of 1/12 of a chocolate rabbit, she's going to be hungry, because 1/12 of a chocolate rabbit is not going to fill her up.  The conclusion I draw here is that, yes, technically, she could have gotten a chocolate rabbit for Easter, but the restrictions and limitations would have made it punitive and cruel: dangling the carrot and snatching it away.  Considering, that we have candy left over from Valentines Day; boxes and boxes of Girl Scout Cookies, and the basket of goodies that her pediatrician (?WTF?) sent after her hospital stay, all of which we are already trying to slowly ration out and "fit into her meal plan," a chocolate rabbit would just muck things up even more.  What would be the point? The thing would have collected dust before she could eat it.

We were put on a relatively restrictive meal plan coming home from the hospital.  I have since spoken to other parents who were given ratios, and therefore more liberty, right from the start.  I don't know the reasoning behind the plan we were given, but I do know that any changes to her prescribed management plan come too slowly for my taste.  The original treatment trajectory we were given, would have meant that we made NO changes to her meal plan until her first follow-up appointment with her endocrinologist.  That would have been April 22, about 6 weeks after her diagnosis.  I try to imagine what it would have been like, to keep her on the plan I outlined above, for 6 or 7 weeks, and I go insane.  Fortunately, it didn't work out that way, but that's a subject for another post.  What is important is to understand the the clinic staff are pulling me in the opposite direction from the "old pro" parents.

In addition to the comments about the chocolate rabbit, another question I got, doubting my judgement, was, "Why can't your daughter go to Girl Scout Camp?" It came in an accusing tone, in that same shrill voice.  Before Eleanor's diagnosis, we had planned to send her to Girl Scout camp for a week.  We read the brochure about the horses, the archery, the arts-and-crafts, the campfires, the s'mores, the songs,  and the friends.  She was jazzed!!  However, once we got home from the hospital, I was on such uncertain ground, I didn't have a clear idea what diabetes would mean.  I was well aware that Girl Scout camp was many weeks away.  One could argue that there was plenty of time to sort it out.  I realized that there would almost certainly be countless changes, not only in her management plan, but her knowledge, skills, and comfort level before then.  Still though, I couldn't be sure that sending her to Girl Scout camp was going to work.  I did some quick Google searches and I found evidence that the Girl Scouts themselves don't allow scouts with type 1 diabetes to attend their camps:

I spoke with at least one other parent of an older Girl Scout with health issues, who told me that health care at the camps is a "long standing issue." On the website for our region, I found this:
We are committed to accommodating all girls, and our goal is to provide a positive camp experience for everyone. If your camper has any special needs (physical, behavioral, etc.), please contact us prior to enrollment to see if we can properly care for her during her stay at camp. (emphasis mine)
"See if we can" does not inspire confidence.

I was well aware that I could really push, get an attorney, pull out the BiG Guns.  I knew that.  But, I wasn't even sure I wanted to send her.  I wasn't even sure I wanted to fight that fight, win it, and then be scared to death to have her there.  It only took a moment to discover that the camps are not already set up for her care.  Getting her a spot was going to mean a battle. So, I let it go.  She doesn't have to go this year.  I have enough on my plate just regaining our equilibrium.  I don't need to take up arms to get her a spot at Girl Scout camp, that I'm not even certain I want her to have.  But when I mentioned, in a forum for parents of kids with T1D, that she was disappointed not to be attending.  I got grilled by the experienced parents,

"Why CAN'T she go to Girl Scout Camp?!"

"She CAN have a chocolate rabbit!!!"

And I suddenly felt like I ought to be ashamed of my fear, and the choices I made in it.

Like the chocolate rabbit, I never said "my daughter will never go to Girl Scout Camp." I don't want to disappoint her.  Disappointing her is hard enough, without having other parents sit in judgement of me.  We're all just doing the best we can out here in the front lines.  I have heard the adage that parents of T1Ds should ask ourselves: "Would I have let her do this before the diagnosis?" If the answer is, "yes," then we should find a way to make it work with the diabetes.  I agree. completely.  But that doesn't mean we must do it all RIGHT NOW.

So, while I agree that it's important NOT to promote and foster the all too ubiquitous misconceptions about Type 1 diabetes, it's also important to be supportive of the frightened newbies.  Give us a chance to get our bearings.  I could barely sleep for fear of not keeping an eye on her in those early days, much less consider sending her off to camp more than an hour away.  I need the endocrinology clinic on my side.  I need to follow their meal plan, especially right now, because I need to count on them in the future. The way to do that is by building a positive trusting relationship with them from the start.  I want to get off on the right foot.

So the "old pro" parents pull one way, and the clinic pulls the other, and I'm frustrated and I'm caught, and I'm scared, and what I need is a lot more, "you're doing great"

"keep up the good work."

"you know your daughter best."

"We're here to help, if you have questions."

And a lot less tug of war.


  1. Keep up the good work. The first few months after diagnosis is ROUGH, to say the least. I don't understand why different clinics do things differently, but they do. I also believe that we need to establish a relationship with our kids care teams. But, it never hurts to ask why and that, for me was the hardest part of this. Asking the doctor why they were doing what they were doing. That one question has made it easier for me to see what they see and manage my daughter's diabetes the best way I can. In the end, it's what we all do. Manage the best we can given our situation and our child's needs. And nobody knows those needs or situation better than you. ALWAYS trust your mommy instincts.

    1. Thank you Crystal! Yes, I have asked why, and changes have been made since Easter at my insistence. Changes for the better. Eleanor is on ratios now. That was the first change, and more recently I pushed for them to "allow" us to deviate from the meal schedule. Having her in The King and I, made keeping a regular eating schedule nearly impossible. I needed some instructions for how to feed her at off times. I got them. I'm great at being the squeaky wheel and advocating for her. I don't take anything the clinic tells me lying down. I think what sometimes happens is that people make assumptions about what I am, or am not, doing on her behalf, because I haven't explicitly written it. There is so much going on that I CAN'T write it all down, but that doesn't mean I'm not doing it. :-) Thanks so much for your comment.

  2. Sounds like you are doing a great job.
    And for the record, Amy didn't get an Easter bunny her first year either (which was 6weeks after our diagnosis). We put earrings, stickers, playdoh, etc in little eggs for her. She didn't miss the chocolate, she never eats it anyway. My sister gave her a kinder surprise, which was 10g carbs, which she did get to eat. One of the things that we do if there is a large carb snack with an unfulfilling volume, we add cheese or protein to this snack so she doesn't feel so hungry with it (which I'm sure you've probably done yourself by now).
    Keep up the great work.


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