Category: Uncategorized

Type 1 diabetes demands your respect whether you think it deserves it or not.

Respect, according to Merriam-Webster online, is an act of giving particular attention. Type 1 diabetes demands that it is given particular attention at any moment of the day. People that assume otherwise are seriously mistaken. There are people that feel Type 1 diabetes will work with their plan, and that is just not so. Type 1 has it’s own secret plan, and we are just along for the ride.

Let me explain. People with Type 1 diabetes can have a seizure if their blood sugar drops too low. The key is that there is no number that a person will or will not have a seizure. Some people may have a seizure if they are in the 30s, or 50s, or even 60s. I think you get my point. If a person with Type 1 diabetes tests their sugar and they are in the 50s, regardless of what you may believe, that person could possibly have a seizure.

You may say to yourself, 50 is not that low, and he probably won’t have a seizure, but unfortunately you do not have that power over Type 1 diabetes and the human body. A seizure can happen at any time. Every low, no matter how low or not too low, needs to be treated with the utmost respect. All lows need to be treated with glucose within seconds. It is not up to us as caregivers of this disease to determine how low is too low and how fast it needs to be treated. Low is low and it needs to be treated immediately.

Along the same lines, a high is high and needs to be respected. No one knows how fast a body can go into DKA (diabetic ketoacidosis). Just because a body has seen numbers in the 300s does not mean that that number is acceptable. All numbers out of range need to be respected and dealt with immediately, if not sooner, as they say.

The biggest mistake that I see people make when dealing with people with Type 1 diabetes is an exaggerated comfort zone. Once you see a low that does not cause a seizure the comfort level rises and then you are opening yourself up to more disastrous situations. Once you see a high where there were no ketones and no DKA your comfort level increases and you think all high numbers are nothing to sneeze at.

There is no comfort zone with Type 1 diabetes. All lows are serious. All highs are serious. Type 1 diabetes is in charge. Sometimes it complies and works with our ratios, and basal settings. And then other, more serious times, it does not. It doesn’t comply and it reminds us that if we don’t give it the respect it deserves it will turn around, slap you in the face, and make you respect it.

Babysitters of children with Type 1 diabetes must be properly trained in all aspects of diabetes management. Significant others of adults with Type 1 diabetes must be extremely knowledgeable of the disease too.

When you child is born, you don’t ever want to leave their side. You set them at your feet when you do laundry. You bring them into the kitchen when you are cooking dinner. You never leave your newborn’s side. I know of new moms that bring their babies into the bathroom with them when they shower, just to ensure the little one is breathing while the mom gets clean. Eventually, as time goes on, months for some, maybe even years for others, but eventually the mom decides that it will be okay if she leaves her little one for a short while with a babysitter.

First is may start with a trip to the supermarket with a babysitter watching the baby, then is may be a longer trip out to lunch with a friend, and then finally and even longer trip, possibly over night with their husband. The babysitter proves they are capable one excursion at a time. The baby seems to love the babysitter, the sitter seems to be a really responsible, caring person, a perfect match is made.

A perfect match between a child with Type 1 diabetes and their babysitter is not just about love and responsibility. A major part of the relationship between child and babysitter is knowledge. Specifically, knowledge about diabetes. My son’s Nannie and Papa already had two parts of being the perfect babysitters, there is more then enough love, and they are very responsible, and this weekend they began working towards getting that third component. They attended Caregivers Camp for kids living with Type 1 diabetes this weekend (along with my son’s very wonderful Uncle).

While I am grateful that caregivers camp exists, I am also saddened that my son up until 21 months ago, didn’t need to attend a special camp with his Nannie and Papa, and now because of Type 1 diabetes he does. Up until 21 months ago, there was no special knowledge to take care of my son. You loved him, fed him, and bathed him, that was about it. Yes, those three tasks are still on the list, but now there is so much more.

Now on top of loving, feeding and bathing, my son’s Nannie and Papa need to know how to check his sugar, count carbs, recognize highs, recognize lows, correct high sugar, treat low blood sugar, administer Glucagon, attack ketones, and evaluate insulin on board to name a few of the new responsibilities. They truly need to take my place when I am not around. Not fun and not fair. Grandparents should have the lighter side of the reponsibilities, but unfortunately with Type 1 diabetes there is no lighter side.

Fortunately for both my son and me, his Nannie and Papa are willing to take on these responsibilites, and thanks to their attending Caregivers Camp they are well on their way.

Type 1 diabetes is a unique disease. It does not compare to any other disease for better or worse. In fact, comparisons should never be made between any disease that strikes children. They are all awful in their own right.

I had a funny, sarcastic, to-the-point, kind of rude response when people would say to me, “It could be worse,” when they heard about my son’s diagnosis with Type 1 diabetes. I would say to them, “Yeah, it could be your kid.” Of course, I was hurting when I would say this, and this was my way of dealing with that jab to my heart. I don’t want anyone, child or adult, to have to live with Type 1 diabetes. I don’t say this anymore. I have grown over these 20 months. I have my empathy back, I lost it there for a while. However, I still believe very deeply that a comparison to another disease, or suggestion that ‘it could be worse’ should really be left out of any discussion regarding Type 1 diabetes.

I won’t even get into the other diseases that I have heard that they would be worse. I do want to ask those people that have suggested Type 1 diabetes is easier than other disease if they really know what they are talking about.

I have to prick my 5 year old son’s tiny finger over 10 times a day. That is over 70 times a week. That is over 300 times a month. That is over 3600 times a year. No comparison. Not better or worse. No comparison.

My son gets a site change for his insulin pump every 2 days. That is over 15 times a month that he must endure the pain of a site change. That is over 180 times a year. No comparison. Not better or worse. No comparison.

My son must endure checks at any given time of day, regardless of day or night, awake or asleep. As his parent, I worry every time I go in his bedroom if he will be alive. If his number went too high, he can be in a coma. If his number went too low, he can be having a seizure, and if not caught in time, he could die.

People with type 1 diabetes and their caregivers are the only people that have to worry 365 days a year about ‘Dead in the Bed’ syndrome.

Now I am not saying I don’t think there are worse things. I just don’t compare. That’s not for me to do, and it’s not for you to do either.

Please don’t tell me, “It could be worse,” when you hear my son has type 1 diabetes. I am not sure how I will respond, and I am not sure I will be sorry either.