I was at a party talking home renovations with a friend whose home right now is under construction. It was fun to see the paint chips, talk new cupboards, and new floors. It got me thinking about the EXTREME home makeover we went through when my son was diagnosed with type 1 diabetes.

Upon leaving the Joslin Diabetes Center, hands full of diabetes merchandise –meters, lancets, needles, test strips, insulin, glucose tabs, ketone strips, juice boxes, glucagon, frosting tubes, and more–to keep scary diabetes thoughts at bay—I began thinking about where the heck will we put all this stuff? And so it began…Extreme Home Makeover: Diabetes Edition.

The Kitchen: The hub of diabetes supplies.  IMG_3968

I spent the next few weeks, reorganizing my kitchen cupboards and drawers. I created a ‘go to’ drawer full of all the need right now items for our little type 1. This is where we keep the glucagon and frosting tubes for emergencies. I needed another drawer for all the food measuring tools and the food scale. I emptied an entire area of cupboards and replaced those kitchen items-(why did I have 3 waffle makers?) with all the supplies used to keep my son alive.  Man, there are so many supplies.  I needed an entire bottom section of cupboard space and two drawers to fit it all in…and that was just a three month supply.

The fridge was even harder. Insulin has to stay refrigerated until it is open for use. Then it is only good for 28 days –in even ‘room temperature.’ If conditions get to hot-like in the summer or too cold-like in the winter—insulin can go bad—so the supply kept in the fridge gets pretty big. I started out with the little drawer—the one for lunch meat and cheese. I discovered pretty quick-not big enough. I moved on to the bottom drawers—filled them up and had to continue on to using ½ the door space and all the butter compartments.IMG_3985  If you need butter—you better be prepared to dig behind all the mayo, ketchup, eggs, and salad dressing- relegated now to one of the shelves- to find it.  I have found—you must really, really want butter. Now- upon coming home from the grocery store we ask… ‘Does this absolutely need to be refrigerated?’

The Bathroom: The hub of ketone testing.

With diabetes-you have to test your urine. You do this by peeing in a cup and testing with a ketone stick. For my son, this is a perk of having diabetes. He likes to play ‘mad scientist’ and pretend it is nuclear pee. The kind of urine that shows you have super powers. (If you have diabetes—you DO have SUPER POWERS! No urine check necessary.) To be a mad scientist you need SPACE and an area to keep your science stuff. Drawers were emptied out, counter space cleared. All the pretty toothbrush holders and soap trays replaced with urine cups and test strips.

The Bedroom: The hub of the night time check

IMG_3936The first night, creeping into Frankie’s bedroom with a flashlight and testing supplies-I step on a tiny Lego pieceIMG_3955-which imbedded itself between my toes and left a mark that is still there 3 years later. I call it my war wound. The next morning—room renovation. Legos, tiny cars, and all the tiny toys boys seem to be mesmerized by—all received a drawer, a bin, a PLACE. Floors were cleared and the room rearranged for easy night time access to the bed.

The REST of the house: The hub of CLEAN to ward off illness

A simple cold can land my son in the hospital-so Mrs. Clean to the rescue. I MADE my husband order a dump box from our garbage service—so I could fill it with all the junk we accumulated in the last 10 years of living in the house. Where the heck I got a Pillsbury Doughboy doll missing an arm and why I kept it still puzzles me—along with all the other crap I was holding onto to. I didn’t want to clean anything that wasn’t deemed absolutely necessary to our lives. So out it went or it went through a sanitizing process. In the early days of diagnosis I was a sanitizing clean machine! I’ve mellowed out since then—my husband wishes that nut case cleaner would come back and live with us again.

Three years with type 1 diabetes in our house—at any given time I can tell you where the carb counting book, the meter, or a frosting tube is at the drop of a hat. If you want to borrow my punch bowl…while, that’s another story.



paradeIt hit home yesterday just how much strength my son has to conjure up every day and how love can give you that strength.  Sitting at the 4th Parade, candy being tossed from the floats, I see my kids bagging theirs up for later—when we can check a BG and count the carbs—plan it into a meal. All around other kids are bagging some, eating some. I remember—my kids used to do that. When your favorite flavor of Wacky Taffy gets tossed right in your lap—it takes some self-control to stick it in a bag for later. As Frankie does it-he says “this is mine! I call it!”  His sister Rachel nods, and sticks her own favorite into the bag, also ‘calling’ it. She doesn’t have T1D, but she loves her brother, so she waits to eat it too. Strength and love in action.

A kind woman, sitting near us, offers my kids an ice cream sandwich. Inner me wants to step in, but I hold back to see what the kids will say. “No Thank you” says Rachel. “I have type 1,” says Frankie, “and I just ate and got a shot, so thanks though.” Uh oh, I see the LOOK come across the woman’s face.  She has no idea what Type 1 means. Here is when, as a Mom of a T1D, you have to decide-do I let my child handle this or do I step in? Will she say something negative? Will this conversation take a bad turn as sometimes they do?  “What’s Type 1?” she asks—mainly to me—but I decide to let Frankie take this one. “My pancreas doesn’t work, so I need insulin when I eat. I just ate—so I don’t want another shot, but thanks” he says. “Oh, do both your kids have it?” she asks. I am thinking to myself—she doesn’t know he is talking about diabetes and I am wondering WHAT it is she thinks he has. “No, just my son. He had a virus that triggered it” I say-deciding that a full blown T1D lesson is not the appropriate response to this act of kindness. “While do you want one honey?” she says to Rachel. “No Thank you” is her reply. “You can have it if you want” Frank whispers, “I don’t care.” “No, I‘ll wait & we can have one later” Rachel whispers back. “Mom, can we buy some ice cream sandwiches on the way home?” Rachel asks. Strength and love in action.

Swimming with friends later in the afternoon, Frankie checks his BG before getting in the pool. About an hour into swimming he has to come out to check again. The kids are mid-pool game & I can see on his face he doesn’t want to get out-but he does. Checks his BG, hoping it will be good and he can get right back in, but meter reads low-so he has to eat. I go into the house to get some snacks and when I come back outside ALL the kids are out of the pool. “We’ll eat with Frank and go back in after.”  A friend says.  Strength and love in action.