Category: Uncategorized

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.

 

…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.

In a world where there seem to be so many new cases of allergies, I am finding that many people I meet indeed do have a child with allergies. Many of these people are passionate about keeping their children safe, and more specifically safe at school. I listen to how class parties shouldn’t have snacks so their kids don’t feel left out, or kids shouldn’t be allowed to celebrate birthday’s with a cupcake but rather a pencil for every kid in the class. But what always stands out to me in these types of conversations is that the parent usually ends each statement with, “because my kid could die.”

We have been living with Type 1 diabetes for over 4 years. I have explained this disease to numerous teachers, classroom aides, Principals, Vice Principals, class mothers, and friends’ mothers. Really, almost too many people to count as I always feel I am on a crusade of educating everyone about Type 1 diabetes. But until very recently I never added the, “because my kid could die,” statement to my conversations.

But that is very much the truth.

I don’t want my son’s sugar to plummet while he is sleeping, “because my kid could die.”

I don’t want my son’s sugar to go unchecked and go to high, “because my kid could die.”

I don’t want my son’s sugar to drop so low when he is high up on the jungle gym as he could fall, hit his head, “because my kid could die.”

I am not sure why this statement hadn’t really passed my lips in the four years since diagnosis. Until recently.

Maybe I am taking some lead from the mom’s of kids with allergies, knowing that the world listens a little better when you add in that a mistake may make a child die. Maybe I am tired of living with this disease 24 hours a day 7 days a week and people still aren’t getting how serious this hidden disease really is. Maybe I want people to understand that the reason I wake up at night, sometimes several times a night, over the course of four years is because I do not want my child to die.

Maybe I am just coming to terms with the fact that my child, my heart and soul, my absolute reason for living, could indeed die from this disgusting disease at any given moment.

I make a flippant remark the other day to a friend when we were talking about ‘my’ life. “You know it’s a good day in our house when everyone wakes up alive.” It came out faster than I could stop it. As my mom used to say, what’s on my lung comes off my tongue, and this was the case. Although what I said was not insulting anyone it did set ME back a few steps.

In my world, yes, there are fights about school and even with the school. Arguments about cleaning up or lack thereof. Dissent when it comes to bed time. But all in all, it’s a good day in our house when everyone wakes up alive.