Striving for Normalcy

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My first encounter with Carter in public after his Neonatal Diabetes diagnosis was at an indoor playground in Merrimack, NH. I’m used to always getting looks, truthfully. My oldest son has ADHD and frequently needs to jump around or run around like a crazy man. He’s always the kid at the playground who just needs to run and yell. My daughter also has a very loud voice and loves to yell, so when in playgrounds such as those, I can never lose either of them! But this time, the looks weren’t regarding Corey or Hayley. I got pitty looks, side eyes and whispers about my infant attempting to crawl around the playground. All eyes were on the fanny pack and tubing clearly visible just over the waistband of his pants. All the parents who laid eyes on him were clearly wondering why such a tiny baby was wearing all this gear. And thus became my first frozen-in-time moment when I realized I was now the mother of a child with medical issues- that would always be my title. Cue the looks and stares at Carter for the rest of his life when he’s seen in public wearing an insulin pump, testing his blood sugar, checking his Dexcom or giving him insulin. All the sympathetic stares at me when parents of “normal” children watch me inject my infant with insulin or adjust the settings on his insulin pump. All the constant reminders that my life, and Carter’s, is anything but normal.

EDITED TO ADD: At the risk of offending someone with a child who has no choice but to have all their medical gear on display, I am not saying there is anything wrong with that at all! Heck, if Carter has to go back to the Medtronic pump with the fanny pack and tubing to best manage his diabetes, so be it! This post was just simply about that life-altering moment when it hit me that I DID have a child with medical needs and this was our first time out in public since his diagnosis (I had literally been out of the hospital for 12 hours when we went to this indoor playground for my oldest son’s birthday party). Another post in the near future will highlight a few sights I’ve found to make life with Diabetes for kids “cool”! Sights like Touch1Diabetic, who makes unique and custom belts, pouches, Dexcom/Omnipod sensor covers and even clothing with sewed-in pockets for pump accessories. There are many a resource out there to help kids feel better about having to sport all their gear when out and about. Again, I am not against having to have Carter’s “tech” on display at all- I just hadn’t really prepared myself for all the stares in public at that particular moment in time.

Anyways…

My husband and I already go back and forth about what to feed Carter. Sure, all of our kids are fed as healthy as possible and we try to make sure they all have balanced meals. Of course, Carter is no exception. But for example the other night at dinner, everyone finished their meals without needing prompting or reminders to stop playing. So everyone got a small square of homemade rice krispie treats. As I broke off a small piece to put onto Carter’s high chair- I got “the look” from my husband. The one that suggested he should NOT be getting such a high sugar treat. I took this opportunity, again, to remind my husband that Carter can eat ANYthing we or his siblings eat. He is not limited because of his diabetes. My husband’s argument was that he was already a little high and it wasn’t a good idea. Not to discredit him, he made a valid point. However, I felt it more important to make it a normal thing to have a small treat on occasion. It isn’t fair to bring Carter up alongside his siblings never having any sugar or treat due to his diabetes or current blood sugar. My theory is, bolus for it and move on! It isn’t the end of the world and high blood sugar actually doesn’t do any damage until Carter reaches puberty (per our Endo… this was awesome news to me!)

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We’ve already been talking about Carter’s first birthday in May 2018 and what we are going to “do about it”. I keep joking about “diabetic birthday cakes” and worrying about how much of a regular birthday cake would shoot Carter’s blood sugar through the roof. I wonder how in the heck we are even going to begin to try to bolus Carter for birthday cake or ice cream or anything “normal” children would have at their first birthday party. I just want my son to feel normal. I don’t want to him to ever feel limited by his disease or like an outcast in comparison to his peers. I will do anything to make sure that as he grows up, nothing about this disease limits his ability to make friends or enjoy life’s simple pleasures, like birthday cake.

But I am terrified of this disease as he gets older. Sure, it will make dosing him easier, since he’s on such small doses now. But the thought of him going to a summer camp or even a playdate without me terrifies me. What if he sneaks food or goes low? Will his caregiver or he himself know how to appropriately deal with the situation? What, in his life, will become more important to him as a teenager than checking his blood sugar and dosing insulin? But these are all questions for another time. Right now, Carter is 9 months old and the responsibility lies on me for quite awhile to manage this disease. And during this time, I hope I can make life as normal as any other infant/toddler’s.

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