Normally I would take today to complain...actually I have a list of complaints, I mean topics that I planned to ramble on about this week. That changed yesterday when I read about a family who have amazed me since I first learned of them.
I don't get the chance to read as many other blogs as I would like but I heard about a woman who had not just two boys like I have, but had FOUR and somehow was still functioning. I also learned that she had not just one child with diabetes, no not even just two children with diabetes but that three of her four sons had Type 1 Diabetes. In my mind this lady just went from amazing to superwoman! I have read her blogs and been amazed by her courage and her honesty.
I also belong to the Diabetes Advocates and have been able to see first hand this woman's amazing spirit and giving nature. She has been there with opinions and words of encouragement on many issues.
Meri has been very public about her love affair with her husband. It came as a huge surprise to read that he was now undergoing a serious health crisis. Having previously battled a bout of cancer, he is now facing it again on a much more terrifying level. In Meri's words, "...it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It's pretty much the worst kind of cancer there is."
I have never "met" this woman. I have never met her family. I have read of their courage. I have laughed at their coping skills. I am stunned at this latest revelation. There is little that we, the outside world can do but offer our words of support.
The family has also made one other request--prayer. No matter what your faith, no matter what you believe in, please keep this family in your thoughts and prayers. Send them "positive energy", "healing vibes" and your support. On Sunday March 4th, they also ask you to join them in a prayer circle to pray for a miracle for Ryan, father to four, best friend and husband to Meri.
"Isn't today the day that you need to change your site?"
"I don't think so."
"Let me see your pump. I am sure that you are due for a site change. If not today then you are overdue."
Begrudgingly, my son handed me over his pump. The first thing I noticed was that his battery was stating that it was dying and almost dead. "You need to change your battery...like now. Its on its last legs and I was right! Your site change is today. Get the stuff out and get the site changed."
My son grumbles and heads out of his room.
"What are you doing?"
"I need to get some insulin."
"Holy cow, you are going for the full meal deal tonight! You have a dead battery, no insulin and a dead site!"
I"ts not a dead site. The site is fine."
"Its due to be changed its a dead site. Time for a clean slate!"
Soon we had everything new but sadly he was still high during the night. Can't win them all with Diabetes in the house!
The other morning, I woke up, had my usual Chai Latte and headed down into my office to begin my daily computer ritual. I opened my email program, signed into Facebook and checked to see what had been happening in the world since I shut things down the night before. I love to scroll through and read about my many family and friends as well as enjoy the great new pictures that they may have posted while I slept.
On this fateful morning, I came across a post by a teenage friend. I have a number of "friends" who are children that I have known all of their lives or are the children of good friends. Its always interesting to see what they post--good or bad. This young person and the person's friends almost brought me to tears. I was so proud of what they had to say to each other. I was so impressed and given so much hope by what I read that I had to write about their story.
The poster was disappointed in their own diabetes care. They felt that they had neglected their health over the past week and diabetes had really kicked their butt. They had been running high and knew that it was bad for their body. This person was very upset with their actions--or lack of.
Quickly friends chimed in words of support and encouragement. They understood. They had been there as well. They began to encourage each other. All members of this conversation stated that tomorrow was a new day and they would all work harder to keep themselves healthy. They understood each other. They "got it" in a way that no one else could.
I was so very proud of these young people. They are mature beyond their years. I know their parents. I know that, like me, some of their parents have struggled wondering if their children will "get it". They fear that their child will never take responsibility for their diabetes--that they don't understand the seriousness of the disease or that they just don't want to learn. It appears that we are very wrong.
Even as I write about them, there are tears in my eyes. These young people with diabetes have a maturity that is not often seen in their peers. They are quirky and amazing young people. Their smiles light up a room but they carry a heavy burden. As parents we fear that burden but it appears that thanks to social media, they can share that burden with like individuals and become stronger because of it.
These are not my children but I feel truly privileged to "know" such amazing, strong, and empathetic young adults. Many people refer to children with diabetes as their heroes. These young people truly are heroes. You are amazing! Thank you for sharing in a way that we as parents can begin to understand.
"Did you remember all of your readings yesterday?"
"Well, actually...you see, it was like this...I forgot my morning test."
"Did you have your meter in your pocket?"
"Yeah."
"You said that you always remember when you have your meter in your pocket."
"Well, this time I forgot. Did you text me today?"
"No I was busy with a lot of other things going on and didn't get the chance."
"Well, if you don't remember to text me, how can you expect me to remember to test?"
Quid pro quo...and Mom loses the battle. He later admitted however that he rarely pays attention to my text messages until hours after the fact but if Mom couldn't remember to text then how could I expect the son to remember all of his bg tests? I hate it when my children use logic on me that I have to agree with. I did text him the next day...one excuse he cannot use this time!
"At lunch I have a sandwich and two juice boxes. If I bolus the right amount I go low so I have been bolusing for only one juice box and it works out fine."
Wow, I was stunned. My son had worked this out on his own! He may be forgetting to test and frustrating the crap out of me but when I least expect it he completely amazes me with his diabetes care!
"Grab a pen, a piece of paper and a calculator. Let's figure out what your carb to insulin ratio for lunch really should be." I told him.
I had my child scroll through his pump and find out exactly how much insulin he gets when he under boluses. We figured out how many carbs he really was eating and came up with his new lunch time ratio. I then made him pull out his pump, go into the settings and make the change. His old ratio was way different from the one that he was using by not bolusing a juice box. It obviously needed to be changed.
Today is the first day with changes initiated and made by my son. I am curious to see how he does and proud as well. Despite my fears, and there are still so very many, he does pay some attention. He is learning a little bit at a time. There is some hope! I can breathe again...well for today anyway.
I was talking to my mother the other day about my youngest son's lapses in memory concerning his diabetes care. She told me that I was just worried because he will soon be an adult and I will lose all control. He will be on his own.
I laughed at her. I am not worried, I am downright terrified! I am not sure if the terror is magnified because my oldest son is now days away from being 18 and is currently planning his future with little input from Mom. Knowing that the first child has reached this stage means that the second one is only a few years behind in doing the same thing but the second child has a bit more baggage to consider.
I know in my head how much my youngest son has learned over the past few years. I see some small changes. I know that he will learn at his own pace and he will surprise me when need be. I also know that he will be a young man one day. He will drink. He will most likely do his best to ignore his diabetes. He has already stated that he would rather go back on injections than have to continue to visit a doctor on a regular basis to have prescriptions refilled. (I told him that he still had to go back once a year either way. He was not happy.)
He will most likely move to an area where I am not two minutes away. He sleeps through his lows. He answers his phone only when he feels like it. He has no interest in a CGM and I am not sure if I will be able to convince him of its benefits before he goes off on his own.
Its not just about control...being able to tell him to test or to bolus. Its also about complications. Its about not waking from a low. Its about not telling people around you about your diabetes and getting into trouble with no one to know the difference. Its the fact that he doesn't wear his Medic Alert bracelet or necklace unless I tie it to him. The list goes on and my terror grows.
I can't dwell on any of it. It is still a number of years away. I can only hope for the best. I must prepare myself to accept a happy medium and teach, teach, teach without coming across as preach, preach, preach. Let's hope that there is enough wine and hair dye in the world to get me through! Why do I want a cure? To save myself from myself and this list of fears!
Out of nowhere my son turned to me and said, "You know Mom, if I had to explain to someone what it felt like to be high or low all I would have to do is tell them to watch Suzie and Sweedums eat breakfast. Suzie is what its like to be low and Sweedums is what its like to be high."
I stopped and looked at him. I was amazed. It was a great analogy!
Besides being black versus white, our dogs are extremely different when it comes to food--especially first thing in the morning. Suzie cannot get enough food into her fast enough. To watch her eat, you would swear that she had not been fed in weeks. She swallows a mouth full of food as fast as she can. Before you turn around, her entire bowl is gone and she is looking for more.
Sweedums is completely different. She looks at her food. She sniffs her food. She takes one morsel and chews. She repeats the entire process from sniff to chew for each piece of food in her dish--one piece at a time. You have time to make breakfast, eat breakfast and clean up before she is finished her small bowl of food.
Now if we could just publish pictures of the dogs everywhere for young children with diabetes. "Timmy do you feel like Suzie or Sweedums today?" What a great way to learn...okay only in our strange little piece of the world but I still really love and appreciate the analogy!
