Thursday, June 07, 2012

What not to say to the parent of a Type 1 Diabetic

When you have a child with an invisible disability, navigating the waters of social interactions all of a sudden becomes very tricky. When that invisible disability is actually life threatening, it can turn regular, moderately sane moms (and dads) into raging beasts that sometimes lose their cool and lash out at folks who are only trying to be sympathetic or helpful.
          So, what is a good intended, well-meaning person supposed to say when the person they are talking to discloses that their child has Diabetes?  That might be easier to answer by discussing what not to say. There are a few triggers for the T1D (That’s our short hand for Type 1 Diabetic) family.
          First, please, do not assume that you understand the disease unless you live with it too. There are, unfortunately, copious amounts of information at the ready for all things related to Type 2 Diabetes, but very little of that is applicable or appropriate for a T1D.  Even more unfortunate is that the media does not bother to differentiate the two, making claims like “A Cure for Diabetes Found in Acacia Berries,” without stating that this will do nothing for the person with Type 1.
Given that the media is fraught with this sort of hype, it is easy to assume you may have the magic bullet from the latest Dr. Oz show. False information enrages a T1D parent faster than just about anything else. So let’s clarify some of those misconceptions right now.  I don’t care what you have heard; diet and exercise will not cure my son.   I did not feed him too much sugar as a child.  It is not that I didn’t breast feed long enough.  It is not that he was lazy and should have been encouraged to exercise more. None of those things had anything to do with why he developed T1D.  
There are no miracle pills to cure him of his inability to make insulin.  Going Gluten-Free won’t help (he has Diabetes, not celiac).  It is perfectly acceptable, and in fact necessary, that we have diet soda in our house, as a regular soda would cause his sugars to rise so fast that he would be unable to successfully combat it with insulin.  There are times, of course, when he MUST have regular soda; when his sugars are dangerously low, please, by all means, hand that kid a Coke!
Please, I know you are well meaning and trying to be sympathetic, but I do not need to hear how your grandmother was a diabetic and lost her leg.  I don’t need to hear how Uncle Harold died from heart failure after he went blind and lost a few toes because he was diabetic.  Trust me; parents of children with Diabetes, and T1Ds themselves, KNOW the risks and all the possible negative outcomes from this disease.  We live and breathe the negative consequences every day. Because of that, we rarely sleep because we are up checking our children’s sugar levels at least two or three times a night.
Please do not say to me “But he doesn’t look sick.”   He doesn’t.  Nor do any of his diabetic friends.  This is a disease you cannot see, unless he is very low or starting to go into Ketosis (A condition where his blood sugars have been so high that the sugars are literally turning acidic in his blood). 
This disease is unrelenting.  My child, and every T1D out there, cannot open their mouths without thinking about carb counts and insulin.  I ask my poor child nearly 15 times a day to check his blood sugar numbers because he can go from low to high, and from high to low in an hour’s time.  I ask him about covering for his food, because the consequences for missing a dose of insulin can be bad. Making that a habit can be very bad.  Too much insulin and he could die.  Allowing his blood sugars to rage out of control, and he could die.
Please do not say to me “It could be worse, he could have …..” and fill in that blank with something else like cancer. I am beyond thankful that my child does not have a terminal disease; that I won’t have to watch his precious body deteriorate before my eyes.  To say such things, however, only lessens the severity of what my child actually does deal with every day. It belittles my worry for him.  To say “it could be worse” makes it sound like what he has, a lifetime living with Diabetes, is a walk in the park.  It is anything but…
So what can you say? What would be helpful to the parent who may just be teetering on the edge of sanity between the constant worry and lack of sleep?
Ask me how he is doing.  Not how is he doing about his Diabetes, but ask about how he is.  Ask me how I feel about his diagnosis.  Ask me about what it is like to live with this disease. Ask me how you can help.  Sometimes, all a parent of a T1D needs is to get away and not think about Diabetes for a few hours.  Sometimes we need a shoulder to cry on. Sometimes we need an ear to listen, if it is about struggles we’ve had lately or the amazing advances being made in the treatments for diabetics and in research toward a cure.  Sometimes we need to know what is important to us is also important to our friends, so join us for our annual Walk.
The best reactions from me come when the person I am talking with asks, first and foremost, how my son is doing. Not how are his numbers, not about his disease, but how is HE doing, remembering that while he is a diabetic, he will always be a person first. What is the best thing to say to the parent of a child with Diabetes?  
Say that you care.

Saturday, November 05, 2011

Language I hope becomes like Latin..

.. words that are no longer spoken but in very unique circumstances, like Med School or history class..
  • "Do you know the carb count of this?" 
  • "Have you bolused?" 
  • "What is your basal rate?" 
  • "Your last A1C was WHAT??" 
  • Continuous Glucose Monitor 
  • Personal Diabetes Manager 
  • Glucagon
  • OmniPod 
  • Humalog 
  • Ketoacidosis 

Soon... JDRF is working tirelessly to find a cure. I hold out hope that SOON, all the above will be useless vocabulary. I know that I, for one, would be happy to never speak those words again.

Tuesday, October 04, 2011

Happy Diaversary!!

Happy Diaversary to my Marvelous Middle!!! It is hard to believe that two years have gone by. Many times, it seems like it's been forever. All those late nights, all the blood tests, all the worrying, all of the high numbers, the low numbers…

In many ways, it has become second nature to us to live with diabetes. In many other ways, this is still something new, something foreign, something we don't fully understand. It is an old acquantaince, and a new fear. We get it, and yet.. there is still so much we don't get. I was thinking it had been longer since we were diagnosed. I was convinced that we were about to recognize 3 years. I think that is just sometimes how the mind works - things unpleasant seem to take longer, don't they? So, to those newly diagnosed, folks like us who have been dealing with this for 2 years are "old hats" at it all. But that's not really how it goes at all; you get better at the carb counting, and knowing what will trigger highs or lows, but you still live in a constant state of alert... you still get up every night to check blood sugars even though you have alarms and technology.

You will still be befuddled by unexplained highs, and terrified by lows. Yes, I now know that, for the most part, a piece of white bread has 19 grams of carbs, and M's favorite pizza is 38 grams per slice. I know that a Capri Sun at 2am will bring his sugars into a good range within about 30 minutes... I know that a snack with protein will help him stay stable throughout the night. But there is still much I don't know. I don't know why some days we are in a great range, and others seem to be all over the map...why some days he over-responds to insulin, and others make us wonder if the pump has failed.. We don't know the whole story. There are so many things going on in the background that cloud the picture; so much we can't see, we can't know...

But we do know this.. he is here, he is healthy, and contrary to some "medical experts" who don't know their ear from a hole in the ground.. he can eat cake! So we will... Happy Diaversary my amazing young man... many happy, and healthy, returns of the day..

 .. Until there is a cure...

Sunday, October 02, 2011

2 years, and a lifetime ago...

This is a repost from just about 2 years ago, exactly.  Today, the 1st Sunday in October, 2009, our lives changed forever... As we get ready to recognize Middle's 2nd Diaversary, I wanted to revisit the time when our world started spinning out of control.

I've been quiet lately, not for lack of something to say, but for lack of time to get words down.

Middle and I spent 3 days at Scottsdale Healthcare hospital this week. He has been diagnosed with Type 1 Diabetes. Up until last week or so, he was asymptomatic, so we had no idea. Then, everything started to more or less fall apart for him.

It's funny, though, how you respond to what, looking back, are glaring changes in your child. Middle has always been our bright, cheerful boy who has a twinkle in his eye and won't sit still unless he is building something. For the last week or 10 days, the twinkle was gone. But we didn't really see it.

He had also been drinking water like a fish. This was more noticeable to Steve than it was to me, because Middle would hijack Steve's water in the middle of the night, after he'd gotten up to use the bathroom. I never keep water by my bedside, so I didn't notice that it was mysteriously gone by morning.

We had noticed that Middle was losing weight, but again, it didn't alarm us. He had gotten to be a little chunky last year, topping his brother on the scale by about 11 pounds. But then he started slimming down. His shoulders got broader. We thought he was growing and shifting in his shape from a little boy to a young man. Then he got on the scale. 9 pounds in 3 weeks. That scared me.

When he didn't want to go play in the park, that got our attention. Middle is always looking for an excuse to play in the park... always!! He wanted to go to Oldest's baseball game, but just sat with us, his head on either my shoulder or on Steve's. He was no longer talkative.

The thought crossed Steve's mind.. do we take him to the ER? "And tell them what... he's tired??" But clearly something was wrong. Emergency-room wrong?? No.. but maybe MinuteClinic wrong.

We went to CVS on Sunday after Oldest's baseball game. We didn't bring him home until Tuesday afternoon. His blood glucose level was 474. The nurse practitioner looked at me and said "I think you are going to go to the ER now.." and we went. He was a trooper with the IV, and the emergency room, and the poking of his finger 1000 times a day, and the shots and the knowledge that this is for life.

In fact, Middle has handled this whole transition better than I could have imagined. I expect he may have a fit sometime down the road, but for now, as we learn about carb counting and how to successfully draw insulin into a needle withOUT bending the poor needle.. Middle is almost looking at this as a science project. He enjoys seeing his glucose numbers, and figuring out how many units of insulin he gets depending on what he eats. "So, I have to make some changes, but this is so much better than some of the other things that could have been wrong with me."

Amen, my amazing child ... Amen!

Sunday, September 25, 2011

Matthew's Miracles JDRF video

Walk with us, November 5th, 2011
Or donate to help us find a cure..

Walk for the Cure -->   Team name: Matthew's Miracles