Sunday, November 23, 2008

A Trip to the Movies

It’s about 1:45 a.m. on Sunday morning, which really isn’t that late for me. I come from a long line of non-sleepers and I’m pretty sure both my girls inherited that particular strand of DNA as well. I took the girls and a group of friends to see Twilight last night, we had a great time. It was more than worth it just to sit and listen to all the gasps and giggles from the countless number of female teenagers in the audience.

It struck me that it was one of those moments that Nikki wasn’t thinking about her diabetes – well, let me rephrase that. She stopped thinking about her diabetes after she bolused for the drink and nachos she was eating – as I began to mentally calculate how many carbs were in the nachos, she leaned over and said “there are 18 carbs, I already figured it out” – Anyway, AFTER she bolused, she became one of the giggling, gasping girls in the audience and it was so nice to just sit there and enjoy being with them.

This coming Tuesday is Nikki’s 5th grade field trip to our State capital, Frankfort. Everyone is so excited; the school rents Coach buses for the 5th grade classes, so they’ll be watching movies on the way down and back, plus lunch near the Capital and a tour of the building as well as the State Senate. It’s hard to believe that this will be my last 5th grade field trip as a mom. I’ve actually been doing a lot of tallying those kinds of things this year; last Halloween Party, last 5th Grade Field Trip, last Christmas Party – all this being a “last” as the mom of an elementary school student. Next year I will have a middle schooler and a high schooler, UUUGGGHHH. I’m ashamed to admit how many times I’ve found myself tearing up at that thought of this school year.

We are preparing for Thanksgiving in Lexington with my parents and then a weekend of movies (TWILIGHT again) and decorating the house. In spite of the craziness of our lives with diabetes, we truly do have much to be thankful for.

Saturday, November 15, 2008

Nikki Has Something to Say


One of the things I hate most about diabetes has nothing to do with my blood sugar, my pump or my sites. It's that almost all of my friends say "I wish I had diabetes". I get so mad I can't think straight. All they know is that when I'm low I get to eat and sometimes that is when they can't eat. They say "lucky" or "I want diabetes". It drives me nuts because they don't know that diabetes is a horrible disease.

Diabetes is a monster. A monster that we haven't defeated but I'm not going to let diabetes get in the way of the places I'll go.

Thursday, November 13, 2008

November is Diabetes Awareness Month

The number of children diagnosed with Type 1 Juvenile Diabetes grows by 3% every year - we have to stop it now

Wednesday, November 12, 2008

Transitioning from Health to Type 1 Diabetes: When Your Child is Diagnosed

April 6, 2003 is a day that I will remember, in minute detail, for the rest of my life. That was the day that I transitioned from being the mother of two beautiful, healthy girls to being the mother of two beautiful girls-one healthy and one with type 1 diabetes. There is no way to be prepared for a day like that; having said that, there is also no way to avoid dealing with it. Many transitions occur for parents during the life of their child or children; having a child go from being one with perfect health to one with a chronic illness is among the hardest transitions that some families have to face.

This particular transition has so many branches that we will call it the ‘diabetes transition tree’ for this writing. A large branch of this tree is the fact that little has been done in the way of studying the effects this diagnosis has on a family. According to a study published in the Journal of Advanced Nursing, “Little is known about the experience of parents of newly diagnosed children as they cope with and adapt to their new situation” (Lowes, Gregory & Lyne, p. 253). In this study, 38 parents were interviewed about their experiences dealing with their child’s diagnosis. The conclusion of the study was very informative and may be a good starting point transitioning parents into what amounts to a new direction in their lives: Before diagnosis, most parents associated their child’s symptoms with normal childhood illnesses. The unexpectedness and speed of the diagnosis left all parents ill-prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future. Diabetes intruded emotionally and practically upon all of their lives. Parents successfully adjusted and adapted their lives and rebuilt a new model of the world to accommodate their child’s diabetes (Lowes, L., Gregory, J., & Lyne, P. [2005] p. 253).

The same study discusses Parkes Theory of Psychosocial Transition. To summarize this theory, it is the assumption that a loss, of any kind, causes individuals to be forced to change their view of what the world was supposed to be, versus what the world has turned out to be. “A familiar world suddenly becomes unfamiliar, causing feelings of anxiety and fear that cloud judgement and impair concentration and memory” (Lowes, Gregory & Lynne (2005), p. 254), this is a powerful and accurate description of what is usually a sudden and unexpected diagnosis. In my personal experience I have found Parkes Theory to be accurate; however, it does not account for one factor that contributes to the grief associated with a diagnosis and that is something I call the ‘It Could Be Worse Syndrome’. This syndrome is actually perpetrated by well meaning strangers who like to say to parents “well at least it is only diabetes, it could be worse”. What that does is make the parents feel guilty for being devastated over their child’s condition. It compounds and complicates already volatile emotions; which makes the transition even harder. Most parents are aware, within days of their child’s diagnosis, that diabetes is a life threatening disease. This is something that many non-diabetic people are not aware of; in fact, “38% of Americans wrongly believe that insulin treatment either renders diabetes harmless, cures it, or they don't know the effect of insulin” (Health Care Strategic Management, (1999), p. 8).

Another branch of this complicated transition tree is food. Most families have to completely relearn what they thought they knew about carbohydrates and food in general. Diabetes has a way of making food and eating a chore. According to the Juvenile Diabetes Research Foundation, “Once they've accepted the fact their child needs daily shots or pumped insulin, food becomes the major focus and often the cause of considerable stress for many parents of children newly diagnosed with type 1 diabetes” (2006). Suddenly, a large portion of the day is spent thinking about food: how many carbs are in that; are they fast acting carbs or complex carbs; will that piece of candy cause a delayed high blood sugar; and on and on the questions go. There is no break from thinking about food, it is one of the most important parts of daily life; it is permanent and it is exhausting.

Another large part of this transition has to do with the emotions and life changes for other children in the family; the ones who are still healthy. A diagnosis of this magnitude tends to absorb the parents completely; where does that leave the siblings of the diabetic? A study done in 2001 by PhD and Licensed Social Worker, Colin Hollidge, showed that a well child, who has a diabetic sibling, had emotions that rivaled the mother’s in intensity. Well siblings, in Holidge’s study, had to deal with intense feelings of anxiety, guilt, jealousy, shame, worry and survivor guilt; that is a lot of weight to carry on young shoulders. My oldest daughter has shared stories with me about those early days in her sister’s diagnosis. I thought the best thing for her was for her was to go on to school, so things could at least be normal for one of my children. That is not how she perceived it. She felt pushed away, completely out of control and out of her very young nine year old mind with worry. She believed that her sister was going to die and she would not get a chance to say goodbye. In the years since, she has shared her feelings of shame for being jealous that her sister gets so much attention; and her feelings of jealousy that I love her sister more because she has diabetes. Her feelings are strong and very real. Ironically, my diabetic child has suffered the exact same feelings for the exact same reasons, only they are a mirror image. She has felt like I loved my non-diabetic daughter more because she does not have diabetes; she has felt shame that she wishes she was not the only one in our home with the disease; she has felt jealousy that her sister can run out the door without having to remember a bag of supplies that may save her life-or end it if they are forgotten. Like her sister, her feelings are strong and very real. Unless, a cure is found for diabetes they are most likely going to have live with these emotions on different levels, at different times, for the rest of their lives.

Perhaps the biggest branch of this transition is learning how to live with all the changes. There was a study done in 2000 showing children who had some form of coping skills training, were more likely to have better control of their diabetes and felt fewer emotional problems related to having a chronic illness (Faulkner, 2003). This indicates that parents, who were proactive in addressing diverse issues associated with their child having type 1 diabetes, clearly had a positive affect on their child’s overall emotional well being. A study conducted by Kathleen Hanna, PhD and Diana Guthrie, PhD, listed several areas that parents considered helpful in dealing with their child’s diabetes; they are directive guidance which provides practical support; non-directive support which include counseling behaviors such as listening and unconditional support; positive social interaction which includes participating in social engagements for fun or relaxation; and tangible assistance such as sharing many of the numerous tasks involved in caring for a child with diabetes (2003, pg. 216). The common thread in both of these studies appears to be communication; whether that communication is from patient to doctor, parent to parent, or parent to child.

When contemplating ways of dealing with this disease, well siblings must be part of that plan. Hollidge (2001) suggests several steps parents can take to help their well children adjust; including “physcoeducational groups designed to help parents understand the stressors of the well sibling” (pg. 24). Hollidge believes that when parents come to terms with their own emotions about their ill child they will be better prepared to understand and accommodate the emotions of their well children. Likewise, she feels that entering well children in a group program, specifically designed for siblings of diabetic children, will help them with the myriad of emotions that come with having a chronic illness living in the middle of the family through the person of their brother or sister.

It is clear that of all the transitions families go through, the ones dealing with the life-or possible death-of a child are the hardest to handle. There are many facets to accepting that your child is no longer healthy; that he or she will no longer have a carefree childhood that should be the right of every child. Learning to accept the disease, educating yourself about the disease, facing your own emotions, and facing the emotions of your well children are all branches of this enormous tree; they all have to be dealt with. Whether you are the parent of a chronically ill child or a professional helping a family through this difficult transition, the most powerful weapon, and sometimes the only weapon, you will have at your disposal is knowledge; the key to mastering that weapon is learning how to use it.

Saturday, November 8, 2008

Halloween and more

It’s taken a while, but I think I will live LOL. I started Nikki and Amber on antibiotics because Nikki was showing some severe HIGHS which usually happens about 5 days to a week before she actually gets sick.

Halloween was fun. Nikki went as a princess – Cinderella and Amber was a vampire (she’s currently hooked on the book series Twilight) and they had a blast. Nikki’s blood sugar maintained itself, which always makes things more fun for her.

I had the opportunity to teach Nikki’s class on Friday, yep she called me Mrs. Turner the whole time (while giggling). She’s been waiting a very long time, so she says, for me to be her teacher. She says I’ve taught every other class in the whole building except for hers, so she was pumped. Hurt my feelings a lot I tell you :D (not).

For anyone getting a pump for the first time, be prepared for unexplained HIGHS (as if any of the HIGHS or LOWS are really self-explanatory). We’ve had to play around with basal rates and food bolus ratios, but I think we are finding our stride.

For those of you who may not know, November is Diabetes Awareness Month! Let's educate as many people as possible, starting with INSULIN IS NOT A CURE!!! That one drives me crazy (that people think diabetes isn't a big deal as long as the diabetic takes insulin).

I've also decided to put in quotes from a fabulous book from time to time. It's called Schuylar's Monster and even though it does not directly deal with diabetes; all parents, who have a child who has a chronic condition or illness, can relate to the message of the journey. So here is the first quote:

"Any parent knows how difficult it can be to resist the urge to suck up your child's pain and make it your own (pg. 164)".

Here’s hoping for a quiet 2 weeks before Thanksgiving…….

Sunday, November 2, 2008

The Sweetness of My Girls

I wrote this yesterday (Saturday 11/1) but we've been having computer router problems, so I am just now getting it posted......

I’ll start off this blog by saying I’m sick. That’s not the sort of thing I readily admit, for a variety of reasons, but I must explain that for this writing to make sense. I’ve been sick for about 3 weeks, and 2 days ago it really started to do me in. By this morning I thought my head would explode. So I’ve been in bed, literally, all day.

My girls have had people in and out all day, but they have been so wonderful about just letting me lay here with my headache. They pop in from time to time and watch a show here in my room, or ask a question and they’re off again. This evening they are both home with one friend each; Bryan is gone to ref a high school football game.

I did start on antibiotics this afternoon; so I’m expecting a full recovery by …. Tomorrow? Being sick just isn’t in my schedule :>) Anyway, I was just about to fall asleep when I heard a weird sound, a weird ‘mommy’ sound, it was enough to make me sit up and listen harder. Then the sound got louder, it was Nikki crying. One of those ‘there is something wrong, for real’ cries. I got up and went into the kitchen, Nikki was crying very hard and Amber was standing there beside here with arms around her (their friends were still downstairs).

This is what happened: Nikki’s dog had gotten her leg tangled in Nikki’s ‘wires’ (pump) and had accidentally pulled out the pump site. That didn’t feel too good, but Nikki didn’t want to bother me with it; so she decided she could handle the situation by herself – let me also say that the dog pulling out her wires has never happened before – it was fluke. She came upstairs, got out a clean site and tried to insert it (it’s like an I.V.) herself in her stomach, without using any numbing cream. At the last minute she ‘flinched’ when inserting it and the cannula (i.v. tubing) didn’t go in all the way and it was hurting her. She still didn’t want to bother me.

Her next step was to try the ‘skin cement’ (something we use when the sticky tape isn’t adhering to her skin like it should – it helps hold the i.v. in place) to see if that would make the site stay in anyway. NOT A GOOD IDEA; it caused stinging, intense stinging. At this point she began crying, not loud enough for me to hear where I am, but Amber heard her and came to find out what was wrong. Amber looked at the site and when she touched it – Nikki had a meltdown. Now for an adult, it probably doesn’t sound like that big of a deal, but when you’re 10--well, it just is.

I came in, took the site, which was hanging halfway out, the rest of the way out; iced it and we started over. It took only a few minutes of mommy hugs and kisses for Nikki to calm down and things went back to normal almost immediately (Amber stayed beside her until she had calmed completely down – I made them both promise that they would get me even if I am sick :D). The focus of my story is the sweetness of my girls. Nikki’s concern for me and not wanting to make me get up, Amber’s concern for her sister….I am just so proud of the young ladies they are. My cup runneth over.