Things I wish you knew about Type 1 diabetes…

1. I wish you knew that there really is no controlling blood glucose. Blood glucose is affected by weather, emotions including but not limited to fear, excitement, and worry, illness, growing, hormones, sleep, activity or lackethereof, severe change of schedule, and absorption of insulin. I’m sure there are more but those are the biggies for us. Until I am able to miraculously control each and every one of those variables then I might be able to control my son’s blood glucose numbers. For now I have to be happy with managing those numbers to the best of my ability among  the plethora of variables that seemingly conspire against me day in and day out.

2. I wish you knew that things can turn on a dime when dealing with Type 1 diabetes. We can be trucking along with blood glucose numbers in the low 100s (good range) and then Wham! Blammo! out of know where a site pops out somewhere between the last BG check at 1:00pm and the next one at 4:00pm and we can have a blood glucose reading of 495 with 1.1 blood ketones. We go from enjoying our day to emergency triage. Got to get that glucose number DOWN. NOW. Got to get rid of those ketones. NOW. We go from enjoying our day to checking blood glucose and ketones every 15 minutes. Pushing water and insulin like they are one in the same. Ketones are dangerous and deadly and come hell or high water you have to get rid of them. Turn on a dime, life or death, a day in the life…

3. I wish you knew that dealing with Type 1 diabetes is both proactive and reactive. Yes, I am proactive that all my son’s pump settings are in a good place right now, all his other ratios seem to be working and helping to keep his number  in range. We eat right. We rest. We exercise. We live our lives to the fullest. Then there is the reactive. I have to decide on a moments notice what to do with a blood glucose reading of 46, or 446. I have to know exactly what to do when his POD starts whistling and giving an error message that there is NO delivery of insulin. I have to react as quickly as if my son’s life depended on it. Oh wait, it does.

4. I wish you knew that when my son is not under my care, the variables are multiplied as to what can negatively affect his blood glucose. An adult or teacher that doesn’t quite “get” his diabetes will cause my son stress and will make it harder for me to pinpoint how to keep his number in range. A cafeteria menu that keeps changing without notice makes me tell my son the wrong carb count for lunch which will either cause his glucose to go sky high or drop like a brick. A cafeteria worker who won’t tell us the alternate lunch until she looks in the freezer each morning which leaves my son scrambling moments before lunch to find out what his carb count is before he sits down to eat so he can at least finish his meal in the 20 minutes the school gives them to eat.

5. I wish you knew that I live in the moment because I absolutely have to. We have high blood glucose reading and low blood glucose readings every single day. See above. A number is just that to me, a number. I have to see it, evaluate it, and move on. We check my son’s sugar over 10 times a day. Could you imagine if I got stuck on every too high or too low blood glucose reading. I’d be stuck somewhere in August of 2007. So when you ask me, “How is your son? His number was high yesterday.” I am not looking at you in a deer in headlights because you are wrong for asking, but because I honestly do not remember or even know about which number you could be talking about. If I chose to dwell on every number of every day I’d be in big trouble. It’s nice to be asked, but in most cases I won’t have an answer other than, “He is fine.” Until there is a cure, “He is fine,” is the way it has to be or we have no where else to go.

Kid first…diabetes second…easier said than done.

That is my mantra.

Since our diagnosis with Type 1 Diabetes over 4 years ago when my little guy was just a teeny baby in my eyes I have tried my absolute best, and with pretty good success I think, at letting him live as normal as life as possible. After my initial breakdown of hysterical crying and dropping to my knees in the Sugar Free aisle in our Shop Rite I realized that for my son to have a happy, healthy, normal life even living with a chronic illness 24/7 for the rest of his life, I would have to make diabetes fit into our life and not the other way around.

Many families try to make this their mantra as well, yet many have a hard time succeeding at it. And I find holidays like Halloween, Thanksgiving and Christmas really test our mettle as to whether we are true to this mantra or not.

The way our house works with regards to making a food decision I ask a few questions: Is it healthy? Is it a good food choice? Is it the right time for something such as a treat? Would I let my daughter without diabetes eat it? It’s the last one that really has kept me grounded. If I can answer yes to the previous questions and then a final yes to the last question, then I do say yes to my son, the child with Type 1 diabetes. If my daughter’s allowed candy, then my son is allowed candy.

This time of year, with Halloween fast approaching, I see many places like dentists, orthodontists and schools that have candy buy backs. They buy back the candy that the children received on Halloween in exchange for a small gift or a dollar amount. The purpose of these buy backs is to keep America’s children’s teeth healthy, their weight in check and as a measure of good will as some of the candy is donated to troops. I have not seen one dedicated to buying back candy from kids specifically with diabetes, yet many parents’ of children with diabetes seem to gravitate towards them.

Prior to my son’s diagnosis he had 3 Halloweens under his belt. Not once did I consider going to a buy back. Yes, he was just a baby, and yes, I’m sure we ‘helped’ him finish his candy, but a buy back was not ever something I considered. If I was a buy back participant than maybe I would consider it for my children now, but I wasn’t so I don’t.

We trick or treat. We are candy people. I steal the candy from my kids as we trick or treat. We eat the candy for a few days. I bolus accordingly. We are pumping so bolusing between meals is a bit easier than when we were on shots, but even on shots we did it. I would add a few pieces of candy to his meal bolus so that he could enjoy the candy with the same shot that was given for dinner. Yes, giving the candy when he ate might not have been exactly the way we did it before diabetes, but you have to work with what you have. A shot regimen doesn’t allow for easy snacking between meals, but we always made best of it. Candy was eaten and enjoyed just like every other kid.

Now I am not knocking the candy buy backs. They are great if that’s what a family wants to do. But our involvement or lack thereof in a buy back has nothing to do with diabetes and everything to do with our love of candy and our goal of living a normal as life as possible for us.


Even this girl has her limits…

…and it seems to be about 35 minutes. That’s the distance that both my son and I consider to be a comfortable distance for me to be away from him. As with most things you really never know something until you are forced to experience it.

Back when my son was first diagnosed with Type 1 diabetes, while I never left his side because I was his only main caregiver, I don’t think I had a limit. I fondly recall going to another state about an hour away overnight early on in diagnosis. Yes, I was worried. Yes, I slept with my cellphone. Yes, I did not have the best time of my life, but I did it. We did it.

Then came the night of the dinner party. A big-person, adult-only dinner party. Now as the mom of two children 22 months apart, big-person, adult-only are not very common themes, but nonetheless, my husband and I were indeed acting like big people having dinner and a few drinks. Then came the phone call.

The phone call that ended my night of big-person, adult-only fun. It was my mom on the phone. She was watching my son. I could end this blog post right here, as most of you can formulate your own story of what can happen to a child with Type 1 diabetes that would require a phone call from the sitter to the mom, but I will continue.

My son’s sugar was dropping and even though the proper treatment of glucose was given it was still dropping and dropping fast. I remember the night like it was yesterday even though it was well over 2 years ago.

I left the party and began to drive home the 25 minute ride with my Bluetooth in my ear. The conversation went something like this:

Me: What’s going on?

Them: He was just 55. We are giving him candy but he won’t chew.

Me: Give him something that he can drink.

Them: We are trying to give him soda but he is saying he just can’t drink anymore.

Background from them: I think he’s tired and he wants to go to sleep.

Me. (Screaming) NO! NO! Do not let him go to sleep! Give him anything!!

Them: (Nervous) Ok, we have syrup and we’re putting it in a syringe (to shove in his mouth).

Background: Noise. Whispering.

Me: (Screaming) Is he awake?!?! Is he ok?!?! What is he doing?!?!

Them: (Loudly) Yes, he’s awake still. He’s taking the syrup. Ok. He’s good. Ok. Ok.

Me: (Screaming) Is he still ok?!?!

Meanwhile I am driving through city streets at top speed, slowing down just enough at red lights so they will turn green while I am still moving and revving it through yellow lights so they don’t turn red on me. I am screaming into the phone because they have the phone on speaker so I can barely make out what anyone is saying. Or if they are talking to me, or each other or my son.

Me: Is he still awake?!?!

Them: (Calmer) Yes, he’s awake. He’s drinking now.

We hang up the phone.

I cry. And cry. And cry.

On so many levels that night was so unfair. To absolutely everyone involved. A child should never feel like sleeping (passing out) because his blood sugar has dropped too low and won’t come back up. Grandparents should never feel fear of watching their grandchild pass out because they can’t get his sugar up. A mother should not race through city streets trying to get to her son for fear that this low may be the low that he never wakes up from.

So yes, I have my limits now. And they will remain until, well, I don’t really know how long they will remain, but surely long enough for both of us to feel safe.