The Effect on the Family Unit

I think most parents of children with Type 1 Diabetes would agree that many of the burdens of this disease are carried on the shoulders of the caretakers. We're the ones that have to weigh the food, count the carbs, do the night time checks, etc. Of course, I'm more than willing to take that on. If I could miraculously transfer this crummy disease from his body to mine I would do so in an instant. As AJ gets older he is becoming a more active participant in his own well being. I hope that he will take it all in stride. This is something that I have thought a lot about.

A topic I had previously given less consideration to is the effects of this disease on the silent bystander. In this case AJ's little sister. Now that Funky is 2 1/2 she is quickly becoming her own person. Yet it is still hard to figure out exactly how much she understands about certain things. Obviously, she has never known a time before AJ's diabetes. At the same time there is no way that she really knows what Diabetes is. She must wonder why she doesn't have to get her blood sugar checked or take insulin.

Most of the time her reactions to the disease seem humorous. Bedtime is always a struggle that includes a list of excuses. Lately, she has been adding one more excuse... "I'm low". Today she tried to check my blood sugar with a pen. Of course, both the kids find it amusing when I accidentally measure her food.

I just wonder how she will feel as time goes on; when she does understand the seriousness of this disease. Perhaps I'm projecting my own past onto her. Since birth my brother has had a serious eye condition. Then in college he was diagnosed with Crohn's disease. There were many times that I felt very guilty. I wondered why it wasn't me that had the medical problems. On the flip side, I also resented him sometimes. I felt that my parents let him get away with a lot because of their own guilt. There were also things that we didn't do as a family because my brother wasn't able to.

I suppose I can just hope that we make her feel just as special and loved. I also want her to feel that she is a part of AJ's diabetes "team". Families support each other. Plus, when it comes to diabetes you can always use as many people in your corner as you can get.

It Doesn't Hurt to Ask

I don't think a lot of people realize it, but I'm a shy person. Once I get to know you I'm a loud mouth but, I'm not an extrovert. I also hate controversy. And typically I am afraid to ask for things. I hate having to inconvenience anyone. In short I have no spine. Oh, you can also add that I'm not exactly a glass half full girl. I don't consider myself a pessimist but rather a realist.

So by now you're probably wondering why I have just listed a few of my grand flaws. Well this past weekend I was forced to leave my comfort zone and I learned a valuable life lesson in the process: It Doesn't Hurt to Ask.

I recently posted about my anxiety over summer camp. I couldn't imagine that anyone would be willing to take AJ. Allowing him to attend camp would mean being responsible for blood sugar checks, giving insulin and watching out for any signs of hypoglycemia. Then last Sunday I went to our local summer camp fair. I took lots of deep breaths and walked up to the various representatives at the fair. I was very upfront and dove right in with the big question. My son has Diabetes. Are you willing to have him at your camp? Okay so it wasn't quite that simple. The conversations were a bit more detailed. However, the great news is that there were a few camps that were happy to enroll him. It couldn't have turned out better. The director of the YMCA camp was there and she has worked with a Diabetic camper in the past. We happen to be members of the Y so this is the absolute best option for us. For now we have decided that we are still a little nervous about a full day option. Instead, he will do half days. This works out well since we have joined the outdoor pool. I will pack lunches, pick him up from camp and then we can all swim.

This experience has really taught me that I need to overcome some of my fears. And not just when it concerns my children. Will it really hurt me that much if someone says no? I guess not. And you can't get anything if you don't ask.

Summer Camp Stress

Diabetes is a chronic disease that is manageable. That's not to say that the managing isn't a full time job. Even with myself, my husband, a team of specialists and AJ working to maintain good blood sugar numbers, it doesn't always happen. We have our good days and our bad.

However, diabetes doesn't usually impact our lives dramatically on a day to day basis. Yes, there are the small annoyances like school parties. Typically the treats get packed up and sent home. This bothers him a little bit but we deal with it. With all the allergies that kids have he knows he's not the only one in the school.

Unfortunately, there are times that I am painfully reminded that my son is "different". My feelings of guilt, sadness, anger, frustration, etc. that accompany this disease always seem to rear their ugly heads during this time of year. What is so special about February you might ask. Hard to imagine, since we have about 30 inches of snow on the ground, but this is the time when camp information starts flying around. Our area is lucky to have some great camp programs. The problem is that most of them don't have a nurse that could deal with AJ's medical needs. I doubt that many (if any) programs are going to take the responsibility of counting carbs and giving insulin. Even if they are willing, will I be comfortable with the situation?

Diabetes camps do exist. The problem is that most are only for about a week or two. And all the overnight camps start at 7 or 8. We do take part in a week long diabetes camp in Delaware. It is an hour drive each way, which means 4 hours a day of driving. Of course, it is worth it because he has a blast. He loves to meet other kids that know what it's like to have the big D.

So where does that leave me? Well there is a camp fair coming up on the 28th. I plan on attending and I am going to cross my fingers that I find a program that will work for us. Otherwise, this may be a VERY long summer.

On the Hamster Wheel Again

We are fortunate that on most days Diabetes is just an inconvenience. To be frank it's a huge pain in the rear. There is the endless poking of the fingers to do blood sugar checks, site changes, etc. However, for the most part we go on with our lives. That's not to say that it isn't a constant cause for worry or stress. But we deal.

Than there are days or weeks that Diabetes suddenly rears its ugly head and causes us trouble. This week was one of them. It first started with our interest in a CGMS (continuous glucose monitoring system). This device would check AJ's blood sugar (kind of... I won't bore you with the actual medical mumbo jumbo) every 5 minutes to show us if he is heading up or down. We would still have to perform regular finger checks to confirm what we see and to calibrate the machine. Why bother then? Well because it can show you things that you might not otherwise see. When we check AJ now we only know the # we get; is he high, low or okay? What we don't know is where he is heading. The CGMS can be a very effective tool. The reason we haven't done it before now is that it requires a separate site to be worn. Here's what the CGMS and pump combo looks like:

There was talk that they would somehow integrate it with his pump site but that doesn't appear to be happening. He has been dealing a lot better with his pump site changes but certainly doesn't love them. So do we really want to subject him to that?

Of course, another concern is the cost. This is where I turn into the hamster running on the wheel. I called the company that we would order the device from to see if they knew how much it would cost and if our insurance would cover it. Not so simple. In order to find this out I have to call the doctor's office so they can fax a letter of medical necessity over to the insurance company. Now right there I have to laugh. The doctor basically needs to stretch the truth and state that AJ is "uncontrolled" and that he needs the device. I suppose this "uncontrolled" diabetes will be the reasoning why he will never be able to get life insurance. But I digress. I had the endo's office fax over the ppw. Then the insurance company will get in touch with the company. And the company will get in touch with me. Weeks of spinning on a wheel just to find out how much the thing will cost us! Because we're still not sure we are going to get it!

To top things off both kiddos have had a cold. AJ's must be getting worse. All night his numbers were very high. This morning I checked him and it was way too high. Even worse he had ketones. So we haven't left the house. He's been a tinkle machine all day because of all the liquid I'm pumping into him. And we are all a little more than cranky. Although, I guess if we were going to hibernate a rainy day is the perfect day to do it:)

One step at a time

One of the reasons I voted for the President was his stance on stem cell research. I'm glad he followed through. This is a great day for the Diabetes community. One day we will have a cure.

JDRF Praises President for Executive Order Lifting Restrictions on Stem Cell Research

First day of camp

Today Aiden started a week long camp for kids with Diabetes. Not surprisingly, he was in hysterics when we left. We called to check in on him later and he was fine. His Daddy is picking him up now so we'll see how it went. I'll update more when I can.

Mama Mia...what a weekend!

Here's the low down on our fun weekend:
Friday night: Mommy went out with the ladies to see Mama Mia and have dinner. I loved this movie!! I must get the music because I have the first two sentences of each song stuck in my head. It is so nice to get out with friends, get dressed in something other than gym cloths and talk about adult things. Plus, I have a name and it's not Mommy! One of my favorite things about getting dressed for these nights is the tiny purse.

This isn't mine but it's cute.

Even before Funky came along I had to carry a large purse. I know that with a 4 year old it's typical not to carry much. But one of the physical effects of diabetes is a bad back. Not for the kid but for the Mommy. Whenever we go out I have to carry his glucometer (blood sugar checker) and his emergency kit. The kit contains this: big ass emergency injection, supplies to change pump site, AAA battery, glucose tablets and syringes (plus other supplies that I know I'm forgetting).

Saturday: We went to Dutch Wonderland, a kid's amusement park. AJ had a blast. He is a pretty timid kid so we weren't sure how it would go. We were so proud. He went on everything except the larger roller coaster. He told us that he might try that one when he's 5. Meanwhile, he is already asking to go back.

Lovin' those fast corners.

Taking a pony ride.

As usual if FC has her binky she's good to go!

Sunday: The hubby and I got to have a date night. We went to see Dark Knight and had dinner out. It's always nice to reconnect.