Friday, March 12, 2010

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.


Wednesday, March 3, 2010

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.


Wednesday, February 10, 2010

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.


Tuesday, February 9, 2010

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.


Wednesday, February 3, 2010

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.


Wednesday, January 6, 2010

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?


Tuesday, January 5, 2010

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:)