Support

I truly am one of the luckiest people on the planet. About one year after my son was diagnosed with diabetes I joined the world of technology and "found" the Internet. I had been struggling for most of that year. I knew no one with diabetes. I was living far away from family. Life was hard in a lot of ways. I had a child with diabetes who hated to eat. I did not have a clue how to give him the insulin I knew he needed and keep him conscious. I was spending more meals in tears than not. I was at my wits end.

I searched for children with diabetes and it did not take me long to find my life-line. I found the Children with Diabetes website but more than that I found some incredible friends. I found people that would challenge me to do more...and I did. I found find friends who would help me when times were tough...and they were. I found friends who would cry with me when that was all I had the strength to do. I found friends who believed in me.

Over the years I have lost track of some of these people but many more have remained incredible friends. I have been able to give back to some people and hopefully be there for a few more. I learned about "Friends for Life". Those are people who are brought into your life because they are struggling to deal with the same chronic illness that you are. They have been there, done that...and guess what? We do have t-shirts!

As I posted the other day, my latest trial has been puberty and not testing. I went to my CWD email list and asked for advice from those who had survived the teen years and have such incredibly well adjusted young adults in their lives. Once again I found awesome advice, incredible support and just as importantly, I was able to open up a venue for others to express that they were going through the exact same thing and how they were handling things.

I wasn't alone and funny but even those kids that I thought were perfect had had their moments as well. As terrible as it sounds, that made me feel better too!

One of my friends provided me with extra support. She knew of someone who specialized in this issue. He had lived with diabetes for almost 50 years and was well versed in teen aged issues. He kindly called me and we chatted for a bit. He gave me some guidance and helped me to put things in perspective. He told me to call anytime. His time is paid for by Animas (Johnson and Johnson) and they offer his service freely. He was worth his weight in gold to me. I am not claiming that life will now be a bed of roses. He said some very powerful things and I have a LOT of work to do. He did not claim that this would be a cure and my son would instantly realize all that he had to do, the dangers of diabetes, or the sacrifices of his mother. Actually he claimed just the opposite...the kid will hate you but it will work out. Ironically, that was comforting.

Forty-eight hours ago I was stressed, depressed and alone. Today I am know how un-alone I really am. I have incredible friends who look out for me no matter how far apart we may be geographically. I truly am very blessed.

Can I cry now?

Can I cry now? I feel like just sitting down and letting everything go. I am not sure if I would be crying for my failings or the failings of my child. Would it change anything? Probably not. Would I feel better? Well until I looked in the mirror and saw those horrible puffy eyes but then again they would go quite well with the increasingly greying hair.

Tonight was a repeat but worse of many nights we have had over the past few months. Liam has only just got a permanent teacher this week. I was away for the first day of this week. I was busy with his brother yesterday and then he was with his father last night so tonight I asked for the week's readings. Bad move...well bad move for my nerves.

Liam had forgot to bring his log sheet to his father's so he wrote things down from memory and meter. I wanted to see a few more days and could not immediately find his log sheet so I went through the meter. Again...bad move.

As I scrolled through his school meter I saw tests at 7 am and then nothing until 2pm. I saw readings of "HI". I saw tests at 9 am and then not again until 3pm. I saw lows that were never retested and then heading out to play on the playground. I was in shock. What the heck was wrong with the teacher? Why wasn't he reading the information I had sent to school? What was going on? Was this my fault? Have I been too lax in letting him test and learn on his own? I am asking if things are being done. He is lying to me and telling me it is but I am not looking at the meter each day. I am trusting him. This is my second go-round with a child this age. I should know better but funny it still hurts just as much.

I didn't know what to do. I told him I was sick and tired of this. How can I help him when he can't be bothered to help himself unless Mom is sitting on him. At home he tests fairly regularly. Does Mom need to follow him everywhere? He has lost some freedoms. I will be going into his classroom tomorrow. I am at school anyway but I will make a point to see that he has tested and to have a quick chat with his teacher. I have added more alarms on his pump. I hate having them on because I am the only person who seems to hear them. All it does is drain the batteries. When he is at home he ignores them. When his is at school, he seems to just turn them off. When he is at his father's house they all ignore it. The only one that it seems to help is the battery company because we end up going through so many more of them.

I have been told to step back and let him fall like this. I have been told to be there to pick him up, to help, to push. I tell others to do the same. The logic is sound but the practice? Its killing me and I worry that it is killing him. Am I expecting too much? Am I not on top of things enough? Should I be hovering again? I am going to have to in some respects but will we both get slack again? Will I feel comfortable and trusting again only to see another explosion of disappointment? Raising a teen is tough. Raising a teen with diabetes?? There is too much involved for one person but you do what you must so I will probably allow myself to cry for a moment and then I will pull up my boots and do what I must. I will hover. I will talk. I will check. I will listen to alarms. I will try and stay sane through it all.

I want a normal life!

I am tired of this. I am beat out and want off of this roller coaster. I didn't volunteer for it did I? Well maybe I said that I could handle anything as long as my son lived. I guess I can. I have managed this far but sometimes I wonder. Last night was definitely one of those nights.

My son kindly gave me a touch of his cold. I have been fighting sniffles and a sore throat. Add to that the fact that I have not been able to sleep for a few nights and last night I was exhausted. Bed was all I wanted to see. I drank some cold medicine. I crawled into bed with my book. I tossed and turned and soon midnight approached. I went in, tested Liam--17.8(320), corrected and crawled back into bed. Soon I was dozing into a lovely sleep for an entire four hours. At 4am I woke up and realized that I should get up and test Liam again. I pulled my weary body out of bed and headed back to his room. It didn't take me long to wake up when I saw 2.9(52) on his meter. I grabbed the juice and decided I was going to get a lot of reading done this morning! Sure enough it took an hour to see a rise to a point that I could go back to sleep.

Why couldn't we be a normal family and simply sleep through the night without worry? Because normal is simply a setting on the dryer and we are far from normal. We try though. This morning, after counting carbs and changing insulin cartridges we dealt with some "normal" things. There was the hair that would not stay in place and required Mom's magic touch to fix it all just so. There was the garbage that needed to go out. And there was the goodbyes that seemed especially poignant this morning. My sweet child was still alive, still healthy and still able to wish me safe travels before heading out the door.

Who needs a normal life? This one has some serious benefits.

Passing the reigns

Where does the time go? Its amazing how far we have come. Last year at this time, Liam was finally doing his first site changes. As you may remember, his doctor had ordered him to be doing this by his fall visit. The day before the said visit, he finally changed his site by himself. Now its old hat unless trying to insert in certain parts of his arms. At that point he tends to yell for Mom. He also tends to ask before jabbing a well used area.

At Liam's fall visit, his doctor said that he had to take more control of his diabetes. He had to begin logging and looking at what is going on. Mom was terrified. He is so young to have all of this responsibility. What was the doctor thinking? He was thinking that it is better for Liam to make mistakes and learn now while Mom is there to hover over him than to make those same mistakes when he is off at university and Mom is nowhere to be seen. It made sense.

I am amazed and impressed at how well he is doing. Liam is not a big logger and I am sure that when this is completely up to him, he will never log another thing again. Mom is a big logger so until he is on his own he will log. Ah the power!

It is interesting to see him log though because I am seeing how much he has learned and understands. His log from this weekend for instance shows some major highs after a meal. He went up to the 20s (360+) and there is a note that says "forgot to add in syrup for pancakes". I loved that he took the initiative to look around and see "why" was he so high and found a solution! My baby is growing up.

Before making any changes now, I also have him sit down with me. I try to do this at least once a week. We sit out his charts, I highlight the highs or lows, and then I ask Liam what he thinks. Do we adjust a basal rate or should we make a bolus change? He is usually pretty good about knowing what to do. We are even getting to the point of learning when the basal rate needs to be changed.

This entire concept still blows my mind--having a twelve year old responsible for so much. It scares me and then I realize that he has been watching all of this for almost ten years now. This has been his life. He has been learning for years. He has known since he was toddling around and trying to steal strawberries from the fridge that all of his food needed to be weighed and measured. He knows the carb factors for many foods and now has the scale and calculator handy every time he steals a cookie off of the counter.

We have come a long way. I never thought we would see a day when he could steal a cookie at anytime and eat it. Thank heavens for rapid acting insulin! He is in many ways a normal pre-teen. He is forgetful. He eats me out of house and home. He is special in many ways however. He has a lot to remember in his forgetfulness. He has to take over where his body has failed him. He must provide his cells with insulin. He must remember to test to keep himself in good shape. It is not an easy life but to watch him for the most part its nothing. Its amazing.

Failing

I had a recent conversation that left me scratching my head and wondering where I went wrong.

The conversation had turned to the condition on a great-uncle. He has poorly controlled Type 2 diabetes and has been experiencing complications for years. At the moment he has lost a toe and now, because of poor circulation, is looking at heart surgery and bi-passes in his legs. Those are the facts. He and his wife have worked for years to try and deal with diabetes but they are not winning. We all hope that he will come through the operations and be on the mend soon.

The problem arose in listening to the person recount the tale in their words. The story was changed to my great-uncle having already lost a large section of his leg. It progressed to the fact that "people with diabetes" can be rather embarrassing in their quest for the sweets that they cannot have. They obviously had way too many of them before they got diabetes and that is why they are in this situation to begin with.

Okay, back up the gravy train here bud! Was I really hearing this?? This was coming from a person that I had been sending information to and speaking with for almost 10 years. What in the world was going on here??? I was speechless (and that is no easy feat).

The conversation did not end there. This person when on to speak of other diabetics who had it "really bad". They of course had heart problems and did not live long. Sadly I had my phone on speaker and I just shook my head when looking at Liam. He said "They had diabetes and lost their leg? They had it really bad?" No this has nothing to do with you. We work very hard to keep you healthy. Your legs are fine. Your heart is great. Don't worry. More of the WT??? is going through my mind.

I actually ended the conversation speechless. I just got the impression, from trying to correct things earlier in the conversation, that the truth simply had no place in this conversation. First of all, it should be well known that sweets do not cause diabetes! My son did not consume any sweets at two that caused his pancreas to fail. My great-uncle who has Type 2 diabetes also did not like sweets. His heritage and gene pool made him susceptible to this vicious disease.

Trying to say there is no having diabetes "really bad". Diabetes is a horrible disease. It is a killer. You have Type 1 or Type 2 diabetes. You may have issues maintaining control but you do not have it "really bad"--its all bad!

Obviously I need to try a new tactic for educating people. My own family are not getting it. What am I going to do?

Awareness

I have been big on awareness for years. I want everyone to know about diabetes. I want them to understand the signs and symptoms. I do not want another family to go through what we did when Liam was diagnosed. I want doctors to be thinking. I want parents to understand. I want caregivers to know the serious nature of this disease. I want teachers to be caring and thoughtful. I want to alleviate the fear of the unknown and simply allow the fear of what we do know. Its a healthy fear that garners respect for a horrible illness.

This has been a huge part of my life for almost 10 years now. I don't think a lot about it. It is part of who I am. Liam has a very different take. Its something that is a part of him but its private. Its not to be shared. Its just to be lived with until a cure is found. He will get by. Leave him be and let him live his life. This means that when his teacher asked him to tell her about diabetes his only response was "I have no restriction on what I can eat." That told her a lot! She thought he could out grow this. Boy did she learn a few things with me.

Recently I have become to see a third perspective when dealing with this disease. Its what I would have to call the car phenomenon. You know that when you buy a new car its perfect for you! No one else has a car like it. The color is unique. The styling is just yours...until you drive off the lot. Suddenly there are 10 other cars your color on your block! You see twenty other cars of the same model in the grocery store parking lot. Your special, unique car is EVERYWHERE! It turns out that the same can be said when you are introduced to someone with diabetes!

A friend of mine has two aging parents who live with Type 2 diabetes. They are able to manage with diet and exercise. The father has to test once or twice a day but his control is excellent. My friend had not really had much to do with someone with Type 1 until meeting my son. There was a kid that he went to school with. He knew that there were dietary restrictions and needles. He knew that the child didn't always feel the best but it was nothing more than a fleeting memory.

He watched us with Liam and still didn't quite get the full scope. Liam had a low and he knew that I was up through the night. He quickly heard the constant..."Liam did you test" and wondered how in the world the poor child handled that child of nagging. I tried to explain that it was necessary because Liam forgets two seconds after you tell him something. I didn't push any learning and simply answered questions.

Imagine his surprise when he went to the grocery store and a man came and sat at his table with him. There were all sorts of other places but this guy decided to sit by my friend. He told him that his blood sugar was low and he had to eat now. I am guessing he told my friend this because he started his meal with his dessert and my friend was looking at him a little odd. My friend was blown away by the coincidence. He had only known Liam for a short time and now he was meeting a stranger who had diabetes as well.

As I said, its the car phenomenon all over again because the people he met did not stop there. He took his car to a garage to do some work. The owner's wife has type 1. He took his moose to the butcher to be cut up. The butcher and his friend both had type 1. This was the biggest awakening for my friend. These gentlemen told him of the amputations and complications that they had experienced. The butcher showed him his pump and told him how important it was to his life. My friend and his brother walked away speechless. They now understood why I harped on to Liam about testing. He began to understand how terrible diabetes was. He is shocked by the number of people that he knows living with this disease but before meeting us, well it somehow never came up.