How can I help?

Every so often I get emails from extended family members of newly diagnosed kids. Sisters, uncles, grandparents, and sometimes even friends. Their stories are all different, but in every email I get the same question; how do I help the parents? What can I do?

When Elise was diagnosed, we didn't have any help.  It was awful.  People who we thought were friends and our support system were nowhere to be found.  Over 5 years later it still hurts and I fight major feelings of bitterness towards these people.

So to the ones who care enough to ask, here is my two cents on what you can do to help your friends or family maintain their sanity.

Go See Them
Our 5 days in the hospital were pure misery.  They had Elise in one of the metal cages, er cribs, which she hated, so she spent a lot of time sleeping on us on the sofa.  The room was tiny and the only time the playroom was open seemed to be when Elise was napping.  We ended up eating the food we ordered off the hospital menu for Elise (all they had was grown-up food, with a few selections of baby food).  We were overwhelmed, tired, hungry, sad, and lonely.  Seriously... if they are still in the hospital, go see them.  And for the love of all that is holy, BRING FOOD!

Educate Yourself
This is a good place to start.  This link also has some great info.
Fred and I had to attend classes at the hospital a few weeks after Elise was released.  Unfortunately, we had to attend separately so one of us could be home to look after Elise.  As I sat there alone, I kept thinking how great it would be if someone had come with me.

If you're crazy enough, learn to count carbs... I had a friend whose friend's daughter was diagnosed.  She wanted to bring dinner to her friend, complete with carb counts, to make it as easy as possible.  I helped her out and thought how amazing it was that she wanted to help in that way.

Tell Them 
You know what the most UNhelpful thing you can say to someone going through a crisis?  "Let me know what I can do to help".  I bet you're wondering what is so awful about that, and I'll tell you; it puts the burden on them and takes it off of you.  

Chances are, your friends/family are so overwhelmed, scared, and tired, they don't know what they need.  The best thing for you to do is tell them how you are going to help; bring a meal, offer to tidy house for when they get home from the hospital, do some laundry, walk their dog, make grocery store runs. Don't ask; tell. 

One of the best things a friend did for us when Lucas came over a month early, was to tell me that she was going to stay with me at the hospital.  My Mom couldn't get here for a few days, and Fred needed to be home with Elise; leaving me all alone at the hospital, recuperating from a c-section and with a newborn in the NICU.  I was so scared and overwhelmed, if someone had asked me what they could do, I wouldn't have known how to answer that question. She was a life saver and I am so thankful for her.

Don't Forget
After the initial crisis is over, a lot of times people move on and forget that anything happened.  Your life may have moved on, but for the months (and even up to a year) following diagnosis, your friend/family may be struggling.  Check in on them from time to time to make sure they're doing okay.

Don't Ask Stupid Questions/Say Stupid Things
They don't need to know about your aunt who lost her leg because of diabetes, or a friend who went blind. See this video for further clarification. 

Listen
You may not 100% understand what they are going through, but your friend/family need someone to talk to; especially if they're not part of the DOC (Diabetes Online Community)  or some other support group.  Be there to lend a sympathetic ear.  Even better, encourage them to find a support group.  There's nothing better than being around people who "get it".

Of course this list isn't exhaustive and may not be pertinent to every situation, but the fact that you're here, reading this blog post tells me you're already a good egg. 

On behalf of every parent of a T1, thank you.

I cannot tell a lie

It happened. I knew it would. Hoped it wouldn't. We have a long way to go on this journey, and I thought maybe we'd be able to skip this.

Elise snuck food.

Then lied about it.

We have an open door policy about food. If you want something, just ask... but I reserve the right to say no.

We had a bowl of M&M's (left over from Christmas), sitting on our island counter in the kitchen. Elise was helping me make dinner and I had turned around to stir something on the stove. When I turned back around, she whipped her hands behind her back and had a guilty look on her face. The following conversation ensued:

Me: Elise, what were you doing?

She: Ummm, nothing?

Me: Elise, what were you doing?

She: Maybe I ate an M&M?

Me: Just one?

She: Yeah, only one.

At this point, I though a BG test was in order, and surprise, surprise... 364. I told her that *just one* M&M wouldn't not make her BG that high, and I would appreciate the truth from her. She then replied that she "maybe ate 4. Or more. I can't remember."

I then explained to her about why it is important for her to ask me when she wants to eat something. And why it's important to tell me the truth. We talked about trust, not sneaking food, and when I say no, it's not to be mean... it's for a good reason.

The whole incident surprised me. Elise has always been a very compliant child; quick to listen and obey. I never saw this coming, and I hope I handled it properly. I don't want food to become an issue and cause problems later on.

Has your child snuck food before? How did you handle it? And I'd love to hear from adult PWD who went through this when they were kids. What do you wish your parents had done?

What to expect when you're pumping

If you are a D-Mom or D-Dad, that means at some point in your life you might have picked up the "Pregnancy Bible"; What to expect when you're Expecting. This post is my pumping version... minus the bible part.


You WILL feel like you have been diagnosed all over again.
This is because, more often than not, you will find yourself staring at the number on the meter, fighting the urge to scream the full-length version of WTF. Then you will have no idea what you're supposed to do next, and you will run over to the pile of hand-outs that the CDE gave you at pump class, to try and find the answer.

Pumping is sooooo different than MDI
I'm not sure that anyone told us this. Maybe it's because switching from NPH to a pump is harder than switching from an insulin like Lantus. Anyway, we have found that EVERYTHING has changed for Elise.

She is more sensitive to carbs. Her correction factor went from 500 to 250 (WTF??? in HALF?). She requires more insulin to cover her meals. I am amazed at how much more insulin she needs now that's she's pumping.


You will cry. This is normal.
I think I have cried more these past few months than I have in the last 2 1/2 years. Starting on a pump is a stressful, stressful business people. I highly suggest having bags of tootsie rolls (or -your go-to stress food of choice) stock-piled. You're gonna need them.

And for the love of all that is holy, don't start pumping right before a big event that is going to need all your attention; like having a baby. Or moving. Or going on a trip. I did all of these things over the last year and cannot imagine having to do it while figuring out pumping at the same time.


There will be times you will want to rip the pump from your child's body
I have lost count of the number of times I have uttered the phrase, "that's it. I'm done. Let's break out the NPH and drop-kick this pump out the door." Learning to let go of the "known" is tough. I like comfortable. Hell, I still have a pair of yoga pants from when I was 18 because they are so soft and cozy. If possible, I want to be buried in them.

You just have to ride out the storm knowing that there is a promise of calmer seas ahead.

3 days will pass by in a flash
What is the significance of 3 days? Why, it's when you're supposed to change out the pump site. I swear, if you need time to pass by quickly, just put your child on a pump. Because there are days when I hear that, "beep beep, beep beep, beep beep" and I start cursing because, hell... didn't I JUST do a freaking pump change 5 MINUTES AGO??? WHERE ARE MY TOOTSIE ROLLS?

You will mourn the loss of a contraption-free body
I let go of this a long time ago when we started on the dexcom. But seeing one more thing on Elise's tiny frame has made me sad. Especially when that one more thing leaves a pretty big mark.


You might wonder why everyone thinks pumping is so awesome
I won't lie, I've been asking myself what kind of crack the rest of you guys are smoking to like this pumping thing so much. And where can I get some? But then there are moments when the clouds part, the sun shines through and all is right in the world... like when we get two numbers starting with a 1 in a row. And I think, "yeeeeeahhhh! We got this!" Until the next 400+ pops up.


You need to stay the course
As much as I've been hating pumping, I know that in the long run, this will be good for Elise. One day, when the stars align properly, we will have figured out her settings and we'll feel good about it.

The most important thing is that Elise loves it. She seems to be happier than she has been in a long time. And that is worth all the stress, crying and WTF moments a thousand times over.

***edited to add a little caveat: I started writing this about a month ago. I feel much better about pumping these days but decided to leave this post as is because I hope it will help people see that there is a proccess when it comes to learning to pump. I'll leave you with just two words: pumping rules!

Be Prepared

I was a Girl Guide as a child (Canada's answer to Girl Scouts), and although I didn't really enjoy being a Girl Guide (I was a very shy child and hated to be a part of big groups like that), I took their motto of "Be Prepared" to heart. Mostly because I was born anal-retentive.

I like to be prepared in any situation, for any situation. I do not understand what the words "pack lightly" mean. This lends itself nicely to being the parent of a Type 1 Diabetic; I can't think of any other disease that causes the caregivers to become pack mules.

But I have to admit that I've become a wee bit lazy in my "being prepared". If I'm running out to the store with Elise, I don't always take her insulin with me. I pretty much always have something for a low, but there have been times when we're going to Target or the grocery store and I've forgotten her emergency kit at home. Instead of turning around, I just figure I can grab something at the store if she goes low.

That's why the story in Sarnia, Ontario has given me great pause. For those of you unfamiliar with the story, motorists were stuck for over 24 hours on a highway due to a snow storm and had to be rescued.

On a side note, when the local news had a blurb about this story, they said it took place in Ontario Canada. Ontario is a pretty big place, folks. Let's narrow it down a bit. It's sort of like saying, "a tornado destroyed a town in Texas. In other news..." I'm just sayin'.

And it made me think... what if something like that happened to us? What if we were stuck somewhere with no access to food or the life-saving insulin my daughter needs? What would we do? Now granted, we don't get much snow here, but it reminds me of something that happened to us last Christmas Eve.

We were coming home from dinner following the Christmas Eve service at our church. It was a pretty bad storm for these parts; snow was coming down sideways. We did okay until we reached an overpass. The problem with overpasses is that they freeze when it's snowing/sleeting and become hills of ice. We tried to go over it, but kept sliding backwards. Other cars were coming behind us and were getting stuck too.

It was growing closer and closer to the time that Elise needed her bedtime insulin (which I did not bring with me) and a snack (I don't think I had any food with me either, she had eaten everything at dinner). Thankfully, Fred is an awesome driver and drove backwards through the maze of cars until he made it to an intersection. We then drove along the feeder road until we could drive under the highway instead of over it. A trip that normally takes 15 minutes took almost 90.

Thankfully, it ended well. But that memory, plus the story out of Sarnia, is the kick in the pants I need to become more committed to being prepared. As the mother of a 3-month old and a type 1 diabetic, I have a lot of crap to haul around with me. But the alternative is just too scary.

So tell me. How do you prepare? What are some of your must have items? Are there any products you just cannot do without?

***Yup, that's a picture of a sassy 5-or-6 year old me as a Brownie (I couldn't find any good Girl Guide ones). Go ahead, laugh. But I think I was cute as a red-headed button.

Flummoxed AND stumped

Although it's better than it was, Fred and I are still up two to three times a night checking Elise. We are seeing some seriously WEIRD numbers.

The one that has us stumped during the day is her post-nap number. She is waking up in the low to mid-300s. We can't tell if we're missing a low while she's asleep, or her morning N needs to be increased. For example, to day she was 184 right before her nap at 1:00pm. It took her awhile to go to sleep, and when she woke up at 3:30, she was 304.

I think the only way we'll be able to figure it out is with a CGM, but I don't know if insurance will cover it or how expensive they are (or even if Elise will tolerate such a thing).

We've also been giving her DH(only 1.5 - 2 units) with her bed time N shot because we're having trouble getting her down after dinner. She's high going into it, and no matter how much DH we give her for her dinner time shot, she ends up at almost the same number three hours later. So tonight she was 315 at dinner, we gave her 14 units of DH (4 units more than she usually gets), and exactly three hours later, she's at 335.

I HATE giving her DH at bed time, because it's so scary for us to let her go to sleep with rapid-acting in her system.

Can anyone offer any insight from their experiences? I know it's hard to tell just by what I've written out here, but I'd welcome any advice. I think an email directly to the endo is in order on Monday if we can't figure it out before then.

Thankful for Fred

I need to brag on my husband here. I can't believe it's taken me this long to write a post about him, but I am so blessed to be married to Fred.

What I specifically want to write about is how much of an equal partner he has been through this whole diabetes journey. I don't know that I would have even made it through the diagnoses without Fred there as my anchor and encourager.

I have heard from other Moms how the care for their diabetic child falls squarely on their shoulders. I mean, it makes total sense. We are, after all, the ones that are with them throughout the day. Taking on every challenge, learning about the disease, finding tricks that work, coping with the hardships that diabetes brings. And it becomes so much easier for us to do everything.

From the beginning, Fred was wonderful. He did most of the shots (I was still getting over my needle fear), and we shared in the BG checks. It shouldn't have surprised me, since he's been a very hands-on Dad since Elise was born. But the food and carb-counting were solely my domain, and I came to loathe mealtime.

Fred saw what a burden it was, and wanted to help me. But it was so difficult for me to let go of that control. I work very hard to make sure Elise's meals are healthy, balanced and have the exact carb amount that she needs. And I was sure that nobody could do it as well as I could.

But I also realized that I needed a break. If I had total control over Elise's meals and snacks, that meant I pretty much had to be around all the time. It was time to let go.

Fred started watching as I prepared Elise's food. I wrote down carb factors for all the foods that Elise eats in a notebook that I leave by her scale. I have a bunch of homemade soups in the freezer already portioned out and labelled with their carb amount for a quick, easy meal. Fred now knows a lot of the foods that are easy to prepare and that Elise will eat.

I so, so look forward to the weekends now because Fred pretty much handles everything with Elise's diabetes. I do help out with some of the meal prep, but it's mostly because I'm a total control freak and feel like I need to do something. But most importantly, the option is there for me to not have to. And I know that Elise is going to get the type of care that she would if I was the one doing all the work.

My favourite time is Saturday morning. We get Elise up and I nurse her, but then I get to go back to sleep. Fred started this tradition of a Daddy/Daughter Date every Saturday morning just after Elise was diagnosed. He takes Elise to this cute local bakery and has breakfast with her. Lately he's started asking other Dads and their kids to join him, then they all usually go do something fun together afterwards. Elise comes home, absolutely glowing from all the fun she's had. And most importantly, I get to catch up on some sleep!

I am blessed. I know that. I also know that there are other Moms out the doing most, if not all of the work. You are superstars in my eyes. I honestly don't think I could do it.

And one last piece of (unsolicited) advice; if you have a husband that wants to help, let go of the control you think you need to hold onto, and let him. You deserve the break.