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.

May Her Memory Be For A Blessing

One month ago today on January 9th my dear friend Shari passed away. She was a wife and devoted mother to a beautiful 6 year old girl. She was also an all around amazing woman and friend.

To be truthful I have been avoiding my blog for the past month because I can't seem to put into words all that I feel. And sometimes the "feeling" still hurts too much. Maybe at some point in the future I will write more. For now I'm just going to remember her smile and how it could bring such happiness to all around her.

Happy Birthday AJ!

I'm not sure where the time goes. Can my little boy really be 6?? It seems like just yesterday when we brought him home.

Casey Johnson

It is always unpleasant when we hear of someone so young passing. It seems as though Hollywood has had more than it's share of such tragedies in the recent news. I always feel bad upon hearing about these young celebrities. No matter how a person lived their life, death is always sad. It certainly seems a shame that people who are loved by so many and have so many privileges can succumb to such a tragic end. That certainly seems to be the case with Casey Johnson who recently died at the age of 30 from unknown causes. Although I didn't know Casey her death has hit closer to home. Casey was a young socialite who was known in the tabloids for her famous lesbian affairs and party girl life style. What is not as well known is that she also suffered from Type 1 Diabetes. In fact, her father Robert "Woody" Johnson, owner of the Jets, is chairman of the JDRF. At this point we don't know how, or even if, her diabetes played any part in her death.

Besides feeling sad I also feel a bit angry. Perhaps it's just timing. As I write this a dear friend is literally fighting for her life. Yet, Casey, who had so many opportunities available to her seemingly threw her life away. I know that nothing has been proven yet, but it does seem fairly obvious that she was involved with drugs and alcohol. This can't be healthy for anyone but it is of particular concern for anyone with a serious health condition.

This leads me to the next reason that her death has me upset. I know that at some point soon my son will start asking me questions relating to his own lifespan and the effects of diabetes. I already find myself quickly changing stations whenever Type 2 diabetes commercials are on. They mostly always mention the long term side effects of diabetes, such as impotency, heart disease, etc.

Aiden is a very active participant in his own diabetes management. He can check his blood sugar. When told the number of carbohydrates, he can use his pump to give himself insulin. We have talked often about how we all need to work hard to keep him healthy. However, I struggle with how much much information I need to share with him. After all he is only 5! He has enough added stress in his life. I don't want to scare him with the repercussions that can happen if he doesn't take care of himself. But is omitting the truth the same as lying? What do you think?

Bueller, Bueller

Ah, so this is what Blogger looks like. I had forgotten. For all two of you that used to read, you may wonder why I disappeared. It was for the following two reasons.

1. Facebook: I'll admit I got sucked into the vortex and couldn't seem to juggle my time. And I didn't even play Farmville or Mafia Wars.

2. I will admit that one of my more annoying personality traits is a case of perfectionism. I am an all or nothing kind of girl. I either do it perfectly or don't do it at all. My blog suffered from this mindset. I kept comparing myself to others. Let's face it there are some really good blogs out there. What can I write about that will be exciting? My life is pretty darn boring. A lot of the blogs that I see are money making blogs and involve lots of give aways. I was feeling the pressure to make mine compare to that.

So now I've gotten real with myself. I don't have a professional background in PR, marketing, journalism, or business. So if you want to win something you can stop reading now. I also won't be worrying about my stats; i.e how many readers I have.

I've decided to use this blog as more of a journal for myself and my children. Someday I hope they can look back and get a glimpse of who we all were. I'd be more than happy for you to come read and comment. But if not I'm okay having a blogging party of one:)

Wordless Wednesday

My speed demons!

A Novel In the Making Or Just a Clumsy Fat Girl??

I'm thinking I should start writing a novel. It would be a novel along the lines of Bridget Jones Diary or any of the Jen Lancaster books. I just think that I should somehow profit off of the idiocy of my life. Take this past weekend for example.

I had been hearing about the Zumba workout craze for a while now. For those that haven't heard of it Zumba "fuses hypnotic latin rhythms and easy to follow moves to create a fun aerobic workout". Easy to follow for some, but not me... more on that in a bit. Some of the girls at my gym have been raving about it. I am not usually one to take classes. Too many nightmarish memories of step classes with girls in their thong unitards. Whenever I have taken any aerobics class it seems that while everyone else is kicking up to the left I'm still over to the right doing G-d knows what, all the while trying not to have a heart attack. I explained this to one of the Zumba girls but she assured me that it was nothing like that. So one of my good friends and I took the class together on Friday afternoon. I expected to sweat a lot and feel like dying, so no surprise there. However, the Latin American instructor was like an over-crazed Chihuahua. Her feet were doing things that mine will just never do. So I just kicked my feet around in the hopes that I would somehow look like I knew what I was doing. Meanwhile, the Latin culture tends to have a certain sexual vibe which I'm sure Zumba is supposed to convey. However, this chubster felt about as sexy as these lovely ladies:

So on Saturday I woke up a little sore but feeling good. AJ's soccer game is canceled due to the rain so I figure it's a good opportunity to try a Pilates class. I have done Pilates about 3-4 times before. The last time I had done it I ended up getting extremely ill the next day, which included a 103 degree fever. But I chalked it up to coincidence.

This time around I manage to survive through the class and was actually feeling pretty good about things. The instructor knew I was a beginner and after the class she said I did really well. My stomach muscles were sore in a good way. Yeah, a class I can do! Fast forward about 2 hours. I was barely able to sit because my spine and tailbone were so sore. They felt like they should have been covered in black and blues. Then my back started to really bother me. My shirt rubbing against me was hurting. I finally lifted my shirt up and looked at my back in the mirror. That's when I noticed that part of it was missing. Literally missing. I have a huge circle of missing skin. I have a red gaping hole in my back. Fabulous.

Maybe fat chicks are just destined to stay fat!

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:)

He Makes Me Laugh... When He's Not Making Me Crazy!

Some funny AJ comments:

"Mommy, sometimes when we go down to the basement at school they say XYZ." I couldn't understand what he was saying but it sounded like broken toe.

"No. Not broken toe. But I think they are talking about a toe."

After a solid 5 minutes of trying to help him figure it out I realized that they must be saying Boker Tov. It's Hebrew for good morning. Apparently, he missed that translation about 2 years ago when he probably first heard it!

AJ: Mommy can we go to China?

Me: No. (thinking how nice it would be to go and digging the fact that he wants to experience another culture)

AJ: Why not?

Me: Because it is very expensive. Plus, it takes a long time to get there. Also, I don't think they just let anyone come visit.

AJ: But I really want to go.

Me: Why? (as the light bulb is starting to finally turn on)

AJ: I want to see the factory where they make all my Star Wars figures.

So much for culture.

I had to bite my tongue about possibly seeing kids his own age working in those factories:(

I can only do so much but I did point out some of China's other notable attributes, like the Great Wall, panda bears, etc.

I have a diva on my hands

Funky is already such a little girl and likes to play dress up all the time. She is constantly putting my shoes on and stealing my jewelry. After these pics were taken Daddy took her to the $1 store to get her own necklace, which she refuses to leave the house without. He's a bit worried about her future birthday requests. Diamonds are a girl's best friend! Hint, hint... mommies like them too:)

She loves this hat that is way too small on her.

Posing for the camera. Okay, not really. She just wanted to get into the bathroom.

She normally just puts on my everyday, i.e. flat shoes. However, we had gone out the night before and she found the heels. Evan was shocked and a bit concerned at how well she could actually walk in them!

Wordless Wednesday

On Monday night we went to a Purim pizza party at our synagogue.

AJ was dressed in a Batman bathrobe (sort of like a King) and I had a mask for him to wear but he was having none of that. So it was perfect when he got his face painted like Batman.

Our own Queen Esther.

Clearly Funky was having a great time!

Mommy Time

Recently I was lucky enough to attend a wonderful Moms Night In at the house of Classy Mommy. She always throws a great party. I was able to connect with some bloggy friends while also getting pampered. Thanks to Beth from Role Mommy I had my nails and make up done courtesy of Calista Grand Salon and Spa. Then I was able to check out the products by Slendertone. The Revive system felt like heaven. I was really able to feel my muscles relaxing. One of the ladies demonstrated the Slendertone System Abs. As she lifted her shirt to put on the ab belt I couldn't help but thinking that I didn't need to hear any more. The fact that she could lift her shirt up in front of a room full of women was an advertisement in itself! After having my second child my stomach is a huge problem area so I was so excited to receive the ab system, as well as the Revive system. Look at the video below for some highlights of this great night.

Role Mommy Presents Mom's Night In...Philadelphia! from Beth Feldman on Vimeo

Also, check out this funny video from Slendertone:

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

Bloggy Catch Up

Well there seems to be a serious and contagious virus going around. It's called Facebook addiction. Unfortunately, my blog has suffered the consequence. I know I'm not the only one because it's been pretty quiet at a lot of my regular reads. Anyway, I thought I would catch you up on all our happenings.

So a couple of weeks ago Funky was in our bed watching some Disney while I was putting on my make up. Evan went in to get AJ up and then I hear the uh, oh. Well apparently there was an accident and I went into his room to help strip the sheets off, etc. When I came back to the bedroom I realized that I left my eyeliner within Funky's reach. She must have mistaken it for lipstick.
To make matters worse she was holding her hand up when I walked in the door. All I could think about was the hilarious movie Rat Race, in particular this scene. (If you don't have the time just fast forward to the end)

------------------------------------------------------------------------------------------------

A couple of weekends ago I had multiple errands to run. For some reason the rest of the family didn't feel like joining me. So Evan took the kids to a children's museum. I was bummed to miss it but they had a great time!

Of course, I realized afterwards that putting her in a headband while under Daddy's care probably wasn't the best idea. Olivia Newton John anyone?

Aiden had fun painting his face.

------------------------------------------------------------------------------------------------

Snow Day! We went out for a little while. It was so cold and windy that we couldn't stay out too long. I looked over at Funky and her cheeks were red and splotchy. AJ's were pretty much the same. They had a great time while it lasted.

This was the best pic I could get of the two of them.

AJ had a great time. I felt bad that we couldn't stay out longer. He really wanted to have a major snowball fight.

These were her first steps in the snow. There were only 2 other times this winter that we had snow. We had an appointment for the one and she was sick for the other. She loved it!

A Little Summer Goes a Long Way

On one of the coldest days of the year my daughter got to go swimming. Her awesome toddler class teacher had us bring swimsuits for the little ones. She cranked up the heat and set up the baby pool. Funky had a super time as is clear from these pictures.

Happy Birthday To My Baby Boy!

Here's AJ a few hours after he was born. We had just arrived home. This outfit was also worn by myself and my brother.

And here he is now at 5. This was taken at his Chuck E Cheese party.

AJ has brought so much happiness into our lives. Oh how time is flying by. I'm so grateful for every second I get to spend with him, even when he is making me want to pull my hair out:) He certainly does make me laugh. For example, he had been a bit confused by this whole birthday thing. We celebrated twice over the weekend and he kept saying that he was 5. We explained that although we were celebrating he wasn't actually 5 until today. So this morning he woke up and we sang happy birthday. Then he said, "I think I'm still 4". "Why is that?" we asked. "Because I still look the same and I'm not any taller". So later today I will show him his 4th birthday pictures to prove that he has indeed grown, just not overnight.

I think this is a great shot and AJ is the one who took it!

A Chocolate Revelation

So this weekend we had some early birthday celebrations going on for AJ. I will be posting some pics and more info later. On Saturday night we were having family over and I was baking him a chocolate cake with chocolate icing, per his request. As he was helping me make it I almost started crying because I started to think back to when he was first diagnosed. As I'm sure is the case with any parent who receives surprising or difficult news about their child, I went through a type of mourning period. I started to think about all of the things that AJ might miss out on. For whatever reason one of the things I was upset about was baking. I have many childhood memories of making my birthday cake with my Mom. She would always let me lick the batter from the mixers or the bowl. I never thought AJ and I would be able to share that experience together. However, now that he is on an insulin pump we do have greater flexibility. Plus, the truth of the matter is that we have learned not to be so worried and rigid with his eating anymore. Did I know exactly what the carbs would be for a lick of the spoon? No. Was it possible that his blood sugar would spike afterwards? Yes. Yet I still let him do it. Overall, his numbers are great and I felt that it was an important part of my childhood that I wanted to share with him. I'm so glad I did because we had a lot of fun. It also made me reflect on all the positives that have come out of his diagnosis. The biggest plus is that we have been able to see how supportive our friends and family are.

On an unrelated side note about chocolate Funky Chicken managed to get into a leftover goody bag. She didn't eat any paper but managed to somehow suck the chocolate out of a Reese's Peanut Butter Cup. She was covered in chocolate and quite delighted with herself.