What a month! The month of March was very important to me because it marked ten years since diabetes had moved its unwanted self into our lives. I faced it with mixed emotions. My heart broke for the innocence that was lost but we celebrated good health and the amazing friendships that we had found because of diabetes. I made a conscious choice to begin to focus on the positives. Diabetes was here to stay so no sense crying over spilled milk. It was time to rejoice over the wonderful people that had been brought into our lives.
Its not a big deal.
Its not that bad.
It could be worse.
Those sayings used to make me cringe. I would feel the hair on the back of my neck stand up. My blood pressure would quickly escalate…until today.Today I read something that changed that. It gave me a new perspective and brought tears to my eyes.
I read a letter written by a mother of a child with Type 1 diabetes. The child was 13 years old. He was diagnosed in March of 2000 at the age of three. He was active in advocacy. He was an inspiration to many other young people living with Type 1 diabetes. Notice the use of the past tense? He passed away recently. Diabetes killed him. His mother reflected on how lucky some of us are to be able to say that we “have” a child with diabetes. She noted that “I’d rather have a boy with diabetes, than no diabetes at all.”
Michelle Page-Alswager remains one of the bravest women that I have never met. She challenges us to walk in her shoes for just 30 seconds. I don’t know that many of us could. I remember March of 2000. I remember holding a lifeless child in my arms and willing him to live. I remember bargaining with God for the second time, asking Him to save this child. I could handle anything but he had to live. I remember praying beside his bed. Praying that he would live to see another day. Praying that my baby would be given back to me. My prayers were answered. My son has lived for 10 years with Type 1 diabetes and I hope another 80+ after that!
For the Alswager family, and sadly many others, diabetes was not just a big deal it was a deadly deal. Life must have seemed very bad and very cruel. Things could not have appeared any worse. For my family? Things could be worse. I have diabetes to hate and my son to love. I have diabetes to fear and my son has life to live.
Diabetes is not a big deal? Well we know differently.
Diabetes is not that bad? Death is certainly a lot worse.
It could be worse? Yes, we could have lost our battle 10 years ago but instead we stand here ready to fight another day. I will continue to work to teach my son to live his life to the fullest. To care for himself to the best of his ability. To try to accept and move forward. To love each day and be grateful for all of the wonderful blessings it brings.
According to Facebook, it is “Hug a person with diabetes day”. Personally I think an extra hug every day to show them how much we love them, care for them and enjoy having them alive and healthy is definitely in order!
Last night I was flipping through channels, killing a bit of time before I took my weary body to bed. I watched a show about a trans-gender case, got bored, moved on. I came across the “Celebrity Apprentice”. I have never seen the regular “Apprentice”, let alone the celebrity version but I noticed that Brett Michaels was on. I had read that he was going to be on the show and he would be donating his winnings to a diabetes charity. I don’t really follow the guy very much. I did enjoy listening to Poison back in the day when I had no clue about diabetes or the fact that the lead singer of the band lived with this disease. I decided to check it out and see what the show was all about.
It turned out that the show was divided into women versus men. They each had to run a restaurant for a set number of hours and raise as much money for charity as they could. The team that raised the most won all of the money. The show progressed and then they showed a preview of what was coming. Brett Michaels was going to go low on tv! Now how cool is that?? Not just talk about it but diabetes was going to be real and on tv that night! I called for my youngest son to come and watch the show with me. I told him “Hurry up, Brett Michaels is going to go low on tv! How cool is that???” He thought it was pretty cool and even knew who Brett Michaels was.
While we were waiting, I had my son test. He hadn’t been doing much but it was soon going to be time for bed and I wanted to have a clue as to where he was sitting blood sugar wise. It appears that waiting for Brett to go low had a greater impact in our house than I realized. When my son tested he was low as well! Crap but at least he was still up when it happened. He grabbed himself some juice and we sat back waiting for the “low” scene to appear…and we waited. It turns out that they were showing you what would happen in about another half hour or more on the show! In the meantime, my son retested. He was now LOWER than when he drank his juice! What the??????? Okay, this time Mom is going to get the glucose source. “Do you want juice or tablets?” “Juice would be could” was the reply. Alright then, a big glass of juice it is. We would get this low out of the basement one way or another.
We continued to watch the show. Brett finally goes low. He is given a coke with a nice amount of ice and stands off to the side to drink it. My oldest is watching him saying “He is low! What the heck is taking him so long to drink that? Would you finish that buddy? You are low!” Okay, that child is well trained! It appeared that Brett recovered from his low much faster than my son. Three glasses of juice later the child is finally in range. We sit back and watch Brett Michaels’ reaction as he is told that his team has won and he will get to give $100,000 to his diabetes charity. Awesome!
He is visibly moved. As he walks out of the boardroom, he continues to say that he has lost so many of his friends to this disease. So many of the people that he grew up with have died because of this disease. My heart breaks. Here is this man who is out there (and from what I understand some of his reality tv stuff really puts him “out there”), in the public eye and so tormented over this disease that drives us insane each day. Fame and celebrity may allow him to win a great amount of money for charity but it does not protect him from experiencing the lows of this disease. Congratulations Brett! I may even have to try to stay awake to watch again next week.
The other day I was on Facebook, no that is not the “wow” factor”. Anyways, I was on Facebook and noticed that someone had posted a request to know if people were planning a special green meal for St. Patrick’s Day on the 17th. Again, no big deal normally about people celebrating St. Patty’s Day. Its not a day that I celebrate but it is a date that sticks in my head.
This topic often comes up when speaking with parents of children with diabetes. The child becomes non-compliant (don’t you just love that word?) and the endo threatens to take the child’s insulin pump away from them. I really do not understand the reasoning.
If you child is not bolusing, testing, etc–basically not doing their daily diabetes care by pressing buttons, what makes the professionals think that drawing up a syringe will make them that much more accountable? I think I would feel better if my child had a pump because then I would know that the basal rate is at least being delivered. If they are on shots they may miss injecting the basal dose the same as they are missing the bolus amount.
Maybe they think that if they are injecting that Mom or Dad will be watching the injection and make the child more accountable? What is the difference between Mom or Dad watching/doing an injection versus them bolusing or supervising a bolus on a pump? I am honestly stumped by this.
In defense of the endos however, I have heard of parents who felt that, in some cases, this can be the way to go. It has been suggested that the psychological implication of being attached to something like an insulin pump 24/7 can become difficult for preteens or teens. The constant reminder of their illness becomes too much for them. We know that they just want to be “normal” kids and not stand out in any way. They are often too young to realize that normal is just a setting on the dryer. They have yet to realize the importance of being an individual.
Another reason for “taking away” the pump has been to restrict freedom. In all honesty, I do not exactly understand this reasoning. The idea is that without the pump the child will have to go back to routine meals and eating habits. I find two problems with this. First is that kids will be kids and if they are sneaking food or not bolusing, the lack of a pump and having to inject for food will not change this. If they didn’t bolus they will most likely not inject. If they were sneaking and not telling what they ate, why would the lack of a pump make that behaviour change? The second problem I have with this is that most people using injections will now be put on a long lasting insulin like Lantus or Levemir. They do not require the strict eating schedules of NPH and regular insulin. They allow a child to pick and choose eating times. Yes, they could be put on an NPH regimen but why would you do that when research shows the basal/bolus regimen to be better for your child?
The biggest thing I have taken out of this debate is the fact that an endo should NOT be the one to say your child is not complying and should be taken off the pump. It should be a decision made by the family in consultation with their diabetes team. The child may in fact need a “pump holiday”. They may be overwhelmed and need a different method of delivery to help them cope. It should not however be a punishment with the pump being the reward. Good health is the reward and it should be obtained in the best way for the person living with diabetes…and of course the sanity of the parents.