Thank You

Jason and I would like to send out a thank you to everyone who has helped us through the last month. Lord knows it has been a hard one. In many ways it seems much longer than a month, and in others, it only seems like days. It's like we're stuck in some kind of time warp where time has no meaning.

On Saturday night, the very day of Abby's diagnosis, someone on behalf of Nine Pines Restaurant dropped off a cheque for $300 for us. Apparently they have a fund set up to help people in the community. A great big thank you goes out to them. The Coughlan's had their annual big breakfast over at the camp and took up a collection. That family donation amounted to $160. Last night they had a benefit bingo for us. It raised an amazing amount of $1165.30! When Sherry came over last night to give us the money, we were speechless. We didn't know how to react. We're so touched by everyone's support yet it feels like we shouldn't take the money. That we don't deserve it somehow. It's quite the bizarre feeling. You really do feel like you shouldn't take the money, even though you know you need it. And we do.

This time round, Jason had to take two days off work without pay, because he had used up the last of his vacation days. When staying in Moncton with both Jules and Abby, we had to buy all of our meals. When Abby got sick, we couldn't leave Jules with anyone else, so our whole family had to stay in Moncton. Luckily they had hostels for families which only costs $25/night. We are extremely blessed to have benefits from Jason's work, so we only have to pay $5 for every individual prescription. However, everything the girls need now(which is a lot) in the run of a month, still adds up to quite a bit. I can not imagine how we would manage without benefits. Thank God for them! My heart goes out to all the families out there who have a sick child in their family and no medical benefits.

During all of this, we are still in the process of moving and getting our new house. And we thought that was going to be stressful! When we decided to get the house this year, it was based on cutting back on a few things per month. Now our monthly expenses have increased instead of decreasing. We try not to talk about the money part in front of the kids. We would never want them to think that they were a burden in any way, because they're not. However, last night, as they watched curiously as Sherry counted up the bingo money, I almost wanted to tell them "Look what everyone has done for you." I wanted them to know how many people out there were thinking of them. How people out there cared. I guess that will have to wait until they are older.

Because I am a Jimmy Stewart movie buff, I couldn't help last night but think of George Bailey. In the final scene of one of my favorite movies, "It's A Wonderful Life", the whole community comes together to save him. He stands there speechless as all of his friends, family and fellow townsman drop money on the table, without hesitation, simply because "George Bailey needed help". He opens the book left for him by Clarence(his angel), and reads the line "No man is a failure who has friends". And that is so true. You always hope that they will be there for you when you need them, but when that time actually comes, you are brought to your knees with their response.

So thank you, to everyone out there. Not just to those who gave money, but to all of you who simply took time out of your day to pray for my family... my two little girls.

It really is "A Wonderful Life"! (corny I know...but true)

Optimism

I had thought, during the last few days, that I would never blog again. Delete it. Who cares? What does it matter anyway? I thought I had said all that there was say, on the subject of Diabetes. What more could I say now? Especially now! I really didn't know what I could ever say again. This thing... this disease, had already changed our lives so much. And now? How would we ever cope? How could I go on? Why? I can't do this!!

That was Saturday....... and frankly most of Sunday.

Today is Monday.

Today I am ironically full of optimism, or at least I am at this exact moment. I know I wasn't when I woke up this morning, and I can't say how I will feel tonight when I go to bed, or even an hour from now. But now...right now....... I am ok.

I daresn't say it out loud, but I feel almost......happy. I know! I don't understand it myself. Part of me feels like now everything will be ok. That it wasn't ok before, but now it will be. Now we can go on. That they can do it together.

Ever since Jules was first diagnosed, I've had an uneasy feeling. I suspected, of course, that this feeling was normal. But really, it was much more than that. It was strong. I felt like it wasn't over. That there was more to come. And now, of course, we know that there was.

But now, .....this time, I feel different. I feel like there's nothing hanging over us now. No other shoe to drop. I mean, once you get over the whole shock of it all, the anger phase, the "pity party" phase, the "just wanting to die" phase..... then you get to the real part of it. I know I'm probably not making any sense to the rest of you. But to me, I am.

My family is the best family in the whole world. I believe this, now more than ever. They are a gift from God. I choose to believe that this is all a gift...all of it. Again, in a couple of hours, when it is time for Abby to get her insulin again, I might change my tune. But right now(which is all we can live for) this is how I feel. Unbelievably blessed. Grateful even.

Crazy, but true.

Gonna Have A Good Time....If It Kills Us!

We moved our tent trailer over to the Coughlan's last night. This weekend is the annual Coughlan Family Weekend. Freda and Vance are home this year so it's making it all the more special. She hasn't been home again since Grammy's funeral. I think it must have been very hard for her to walk into that house again. It seems so empty now. So quiet. They are staying there for the duration of their visit(about 2 weeks). And then, as soon as they leave,.....we're moving in!

Jason has finally acquired a trailer hitch and wheels. This moving thing is actually going to happen. With all the stuff that has been going on with Jules, I really hadn't been thinking at all about the house. When we were in the hospital, we thought we could never get excited about it(or anything ) ever again. Now that we are home again though, the same problems that we had when we left, are of course, still here. Like not having enough room. I must say I still can't wait to have that kitchen. A pantry! Imagine! Right now we are living surrounded by boxes. It can get claustrophobic. I haven't packed anything since we came home. So there is still so much to do.

But wise or not, we are taking the weekend off. Jason is actually on vacation again. He found he was just too exhausted. Plus he couldn't keep his mind on his work. His was always wondering how we were doing at home. Now he doesn't go back until next Monday. Awesome! We have had some great days lately. Everyday it seems to get better. I still worry when I think about school starting, but like I said, we're taking the weekend off!

Hopefully we will all have a good time. This year they've added a talent show to the schedule. Jules and Abby are all set to sing. Samuel not so much. He's not into it. A lot more people are supposed to be sleeping over this year in tents or trailers. Ian & Tracy, Hollie & Danny, Jamie & Sandie, Morgan & Denise and Lisa & Sydney are all sleeping with us this year. And I think there might even be a few more. Me, Sherry, Hollie, Ian & Aunt Donna all have our trailers over there already. Christina is supposed to take hers over tonight.

I have decided to let myself consume a little alcohol. At first, I wasn't going to drink any because I was scared of not having my wits when it came to checking Jules at night. But Jason and I both agree that hey, we could use a little drink right about now. LOL. So I'm going to take my little 4-pack of coolers and Jason is going to grab a six pack of beer. Not exactly what you call alcoholics, are we? When you consider that we will probably have the odd drink starting in the early evening and stretch into the wee hours, it shouldn't really amount to much at all.

Oh well, I should go and start tidying up the house. I've procrastinated long enough. Somethings never change. :)

The Rest of The Story

I've been writing about our experiences lately for many reasons. One, it helps me, ...... in a therapeutic kind of way. Two, I want the truth to be out there and not any gossip or horrific made up stories, which unfortunately happen when you live in a small town. I know that only a handful of people read my blog, but it's all I got. And three, I don't want to rehash it or relive it over and over again. It's too hard. What's done is done. I wish we could go back and make it not real, but we can't. So now, all we can do for Jules, and for ourselves, is to move forward..... as hard as that may be sometimes. Maybe I should get some cards printed out with my blog address on them? That way when anyone wants to know how it all started, I can just say "Here! Read this!".

I find that this is bringing up every issue I've ever had. Like not asking for help. I've always been that stubborn person who thinks that I should be able to do it all on my own. Anything less, I always saw as a weakness in me. And being too hard on myself. I have always judged myself much harsher than I would ever judge anyone else. It makes this situation all the more harder right now. Because I DO need help now, and I have to accept it for Jules' sake. Unfortunately, doing it all on my own is not an option right now. And somehow, I'm going to have to learn how to cut myself some slack. I'm not perfect. I will make mistakes. It's just so painful when I know my mistakes will affect Jules and not just me. Like if I don't account for all of her carbs in a meal, or I forget to give her a snack, or check her sugar. Sure, it's not the end of the world. At worst, she'll just run a little high, or a little low that day. But it bothers me so much, it's almost unbearable.

What's really important to us right now, is that everyone acts "normal" around us. The therapists at the hospital suggested that we refrain from using that word - normal. Jules might start to think that she's not. So Jason and I have been using the term "BD", as in before diabetes. We probably won't be able to use that forever as the kids will start to get suspicious and ask us why we are saying the letters BD all the time. What really drives us crazy is when people start talking about it in front of her. Do they not have any sense? I mean it's one thing if she brings it up, which she does quite often. She could tell you all about the pancreas and how hers is sleeping. She's so smart and wise. She's really quite remarkable. I don't want anyone to to treat her any different, because she is still the same old Jules - beautiful, stubborn, smart, sweet, determined, creative, feminine Jules. I get that people are concerned for her, and want to know how she is doing. But there is a difference between asking her in a light sing-song voice, "Hey Jules, How're ya doing?" and saying it slowly with a tilted head and furrowed brow. You know? And unfortunately, for us there is a lot of people who chose to behave with the later.

So, to get to the rest of the story, what does it mean for Jules to have type one diabetes? It means that her pancreas can no longer produce insulin for itself, which we all need to live. Everytime we eat, our glucose level(or sugar) will rise, and then our pancreas releases insulin and it comes back down. Since Jules' pancreas is "sleeping", we have to inject her with insulin. We have to check her sugar many times a day by pricking her finger. Jules does this now all by herself, using a tiny little device. We have to change the needle in it every single time. After her finger is pricked, we squeeze out a little drop of blood, that gets sucked up into a tiny strip, which is connected to our meter. It only takes a few seconds and then it will tell us her reading. A "normal" reading(there's that word again) is between 4 and 8. This is where we want our sugar level to be. We have to check her sugar before every meal, before snacks,before and after any physical activity like gym and of course when she tells us she is feeling "low" or "high". When Jules is feeling "low", she gets hot and pasty and her legs feel "wiggly". When Jules was "high"(before we knew she had diabetes) she was extremely thirsty and had an urgency to urinate.

The average day for Jules right now(it will change when school starts) is like this:

check sugar
eat breakfast
get insulin

check sugar
have snack

check sugar
eat lunch
have insulin

check sugar
have snack

check sugar
eat supper
have insulin

check sugar
have bedtime snack
have insulin

12am -check sugar
3am - check sugar

The midnight and 3am checking will eventually go away. Right now the doctor is just trying to get her levels better. There is also what they call a correction factor for her snacks. Right now if her sugar is > 15, we give her 2 units of insulin, if it is > 20, we give her 3 units.

Jules can eat anything at meal time, just like before (BD). The difference is now we have to know how much carbs she consumes. We have a sort of mathematical formula we use to determine how much insulin she gets. It will be different everytime, depending on what she eats. She is however, limited at snack time. She can only consume 15-20g of carbs at these times. And if she is high at snack time, then she has to have a carb free snack. Jules cannot eat at any other time during the day, unless it is "free", or without carbs. Meat and proteins are usually free, as are most vegetables.

Her insulin is not given in the old fashioned way of long needles and vials. She has what they call pens. They look a lot like a large pen. The actual needle is only 5mm long. This will change as she grows older. An average adult would have to use a longer needle. We change the needle on the pens everytime, just like on the finger pricker. A unit of insulin is very small. I think 1ml has 100 units in it. Don't quote me on that, but it is really, really small. She has two pens. One for the insulin she takes during the day after eating, and the other is a long-lasting insulin that she takes at bedtime.

And lastly, just to talk about pumps for a second. I remember hearing about kids needing an insulin pump and thinking, "Man, they must have it bad". As it turns out, you can't have type one diabetes worse than someone else. You either have it or you don't. An insulin pump is just an option. People get them because they feel it gives them more freedom. A pump is not surgically put in your stomach or anything, which again, I used to wonder about. What happens is a tiny needle is placed horizontally in your stomach, just under the skin. There is some tape covering where the needle is. The needle, which is no bigger than the one in your pens, is attached to a little plastic clip. The pump itself, looks a lot like like beeper or a cell phone. You wear it clipped to your pants. There is a little tube that runs from the pump and snaps into the clip attached to the needle in your stomach. It slowly pumps insulin into your body all day long. This replaces the long-lasting insulin which we now give Jules at night time. You still need to check your sugar and count your carbs, except now instead of getting injected with pens, you just tell the pump how much to give you. It saves you from getting needles all the time, because you only have to change the pump needle every three days. When you shower, go swimming,etc... you just simply click it out, and then later, click it back in. The doctors say that you get better regulation from a pump. But again, it is only an option. It does not mean you are worse off than someone using pens. Our goal is to get Jules a pump someday. Because it keeps you better regulated and because we hate to see her get so many needles.

I've probably overwhelmed you with information.... believe me, I know. It sounds like a lot.... and it is. But what I tell myself is that we are lucky. It could have been so much worse. Diabetes is manageable. She doesn't need any operations or transplants and most of all it is not a terminal illness. This is what I cling to, during those times when I get so sad. I do pray that one day in Jules' lifetime, they will find a cure. They have come a long way, the last few years. They advise you to not mention the search for a cure to Jules. We wouldn't want to give her any false hope. So I pray on her behalf too. But now, as I stated earlier, we have to try to move forward. It's going to be a slow journey forward, for right now. But hopefully sooner, rather than later, we will find happiness in a "new normal", or AD(After Diabetes).



THE END