Awareness can be awkward…

Low on milk, bread, and everything we head to the local market for some groceries.

We have the juice boxes, the 15 gram snacks—and my T1d is looking over the yogurt choices when we hear the words “I love your shirts!” This is grass roots awareness—this is why we wear our shirts—that and the fact that five years in—5 years of walks, bike tours, and diabetes events have us fully stocked up on diabetes clothes- we haven’t needed to buy any other kind.

“Thanks” we reply “do you have family with diabetes?”

“No, but my friend’s- cousin’s –neighbor’s son just died from that—he was like 17” says person “Just went to sleep and didn’t wake up. His name was XYZ—did you know him?”

Lots of weird going on here. I look at Frankie—his eyes are big and his face is red—he is staring intently at the yogurt selection. I am thinking about the fact that person thinks we would know the person—like there is a big list-serve of diabetics— we all know each other-and we all get a shirt.  I am thinking Frankie knows he could die from this, has had a friend die from this—he has to know—it is part of living with this disease-but to hear it from a stranger in the dairy aisle—weird.

“Ahhh, no, I don’t know them, sorry to hear of your friends passing—we will be thinking of all of them.”  I say and I try to push the cart along—no awareness is going to come out of my mouth—just want to get Frankie out of here.

“ He wore a thing” says person, keeping up with my cart “that kept giving him the medicine. He had it really bad”

“All types of diabetes are the bad kind.” I say, awareness eeking out “A pump. You wear it for insulin-the medicine. My son here has Type 1—body doesn’t make insulin so he wears a pump.” I am trying to get person to get it—person doesn’t know Frankie has diabetes. I want person to stop talking.

“You look so good!” says person to Frankie “Good luck with it!”

“UMMM, yeah, thanks” says Frank

I push the cart like a bat out of hell, forget yogurt, forget the rest of the list, and head to the checkout.

“What did you think of that? I ask Frankie

“People say that a lot” He says “We should have worn our coats.”

We talk it out on the way home.

“I’m good” he says “I don’t need a life lesson.”

Awareness can be awkward.

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Amid a box of old ornaments, a fake tree, and a yellowing note that said “Pat’s” …

Simply put, it’s been a tough year. It is with great anticipation and high expectations I look forward to the coming of 2015.

For the first time, in I think a lifetime; I started this season wanting to rush past Christmas. “What!!???!!” I can hear all of my siblings exclaim! I have always been known to them as the sibling of Christmas. I didn’t rush through the holiday the year my Dad died—age 13 – I hoisted that fake tree up the basement steps- when my mom left the house to do errands. “We don’t need the tree and all that this year, Patty, we’ll just put out a few little things.” she said. I thought otherwise, and my Mom’s youngest was, and always has been a stubborn one. I can still see her face when she walked back in the door- surprise, a bit of anger, and in her blue eyes-a tiny twinkle of Christmas magic. She didn’t say a word at first. It took her until dinner, by the lights of the tree that night, she just kept looking over and shaking her head at me, but she was smiling. “You did a good job” was all she said. She let me have my tree, that year, and every other year-and when she passed-she left a note on the Christmas boxes that simply said “Pat’s.” My last gift from my Mom.

My Mom’s been gone a good number of years, and I have put up that old, fake tree, and every decoration bequeathed to me ever since. I love that tree and everything that came with it. This year, it took some effort-diabetes, cancer, the passing of my beloved Aunt, emergency surgeries, moving, and more- I was at a loss for Christmas motivation. But I’ve got kids, and I was a kid whose Mom almost didn’t put up a tree one year, so I know—that will never do. My stubborn nature still serves me well-so I mustered it up and once again- hoisted that tree up the basement stairs for another year.  It still looks pretty good, to me anyway, and I was brought to tears hearing my kids say “Hey! this was your Mom’s!”  “Wasn’t the topper your Dad’s favorite?”  “I think this is your favorite, right Mom?” That tree and how much my children know about the meaning of each tiny ornament- turned my Christmas spirit around.

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The tree reminded me-Christmas is not about the damage cancer, diabetes, or any other hardship tries to inflict. Christmas is about remembering and cherishing-old and new. Realizing all of the difficulty life brings–can’t steal the shine off our tree of life.

Without a doubt the bond of 10 kids, who grew up fighting for space in a 1200 square foot cape cod, has been the brightest, shiniest, ornament on my tree of life. We don’t get to see each other often—but we are there by hook or by crook when the going gets tough. My parent’s- they struggled—to keep a roof over our heads, food on the plates, but never struggled to show the love they had for each other, all of us and in turn- teach us what a treasure family is—treasures like old Christmas ornaments.

I’ve been lucky, to land friends throughout my life, who have been there for me in ways I can never repay or thank them for. They are the sparkly lights on my tree of life—examples of the meaning of Christmas- shining brightly- all year long.

I lost my parents pretty young, but in adulthood was given the gift of ‘new’ parents—my in-laws. I have never been anything but another daughter to them—I have always felt like we have known and loved each other forever. I gained a sister too—who knows how to make me laugh –even when laughing doesn’t come easy. Not to mention the extended family- the greatest Grandparents I could have ever asked for-the uncles, aunts, cousins- in great number – all wonderful new ornaments on my tree of life.

My own little unit-my husband and children. I think of them like my cherished Nativity set. It doesn’t matter if we are in a stable or a grand hotel—life is good because we are together.

So, I almost lost the glory of what this season really is. I almost let cancer, diabetes, and all the rest cast a shadow on the most brilliant light of all-God’s love. Jesus- born to Mary and Joseph- getting through their own hard times-with their family and friends, in a stable, full of love and light and wonder.

Thankfully-amid a box of old ornaments, a fake tree, and a yellowing note that says “Pat’s” I remembered the true meaning of Christmas.

Wishing you and yours a Happy and Love filled Christmas & may your expectations of 2015 be met!

Lead on, Frankie

Frankie–getting older, taking on the ‘betes more every day. He tells me he doesn’t think he needs to text me the pre-bus check anymore. He wants to text only if he needs a pickup–can’t take the bus, and only when he needs me. Oh My!

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Talking it over, we decide to have a ‘trial’ run of “What would Frankie do?” regarding bus check. Everyday–instead of a text with his BG & my text back of what to do—Frankie will be texting me his BG and what HE decides based on the reading…until Holiday break & see how it goes making the final decision before going back to school after break.

Yesterday:

Frankie : BG 182 .50 OB (that’s his BG and insulin ‘on board’- in his system) Aware. (meaning he feels good–‘aware’ of his body) K 2 ride bus.

MOM: good choice–great job–good to go.

When he says “I’ve got this” I know he does—my head knows–but my heart worries and doesn’t want him to have to take it all on–but we have always faced D telling him HE is the leader.

He stayed on syringe shots when all and everyone encouraged an insulin pen or a pump. He decided on pen about a year in—again facing all the “go on the pump” advice. He was not ready—and he knew that better than anyone. The end of year 3—he came home one day and said “let’s go to pump class” where he choose the Omnipod because it is tubeless. We have talked about continuous glucose monitors and he says “I don’t want something else attached, I’d rather take my number 1,000 times.” He has never missed a BG check.

He has been self managing in school for 2 years. In that time his A1C (glucose level over a 3 month period—Frankie’s goal is to hit between 7-8) has gone from 8.5 to 7.6. In the beginning of this—he would text—his BG before and after gym, at lunch, snack time, throughout the day—and we had a  gradual reduction in calls and texts—as he figured it out—and the slow progression to just the bus check—it didn’t hit me like a ton of bricks—because it was gradual.

This change is a struggle for me, my ton of bricks, my smack in the head—because I want to KNOW his glucose level, but I realize—I want to know for MY sake—more than for his. We BOTH know—this ‘trial run’ is for me. This is LOVE. Frankie giving me this time, this trial, so I can get used to this change. It’s coming—he is helping me adjust. Truth is—some days the bus check goes like this:

Frankie: BG 122 Drop Pick up (meaning good BG, but he feels it dropping, so he can’t take the bus and needs to be picked up.) “I’ve got this” and he does.

When playing sports—Frankie gives me hand signals—so I know he is okay—again—that is for ME not him, but he loves me—so he does them. I asked him after a game “Is it better when Dad goes to games?” “Not better-easier” he said.

I am realizing I am another aspect of diabetes management my son considers. He could have stopped sending the bus check (he knows I would have blown up his phone with calls! LOL), or could have told Dad “tell Mom no more bus check,” but he did what a good leader does—he talked to me, and told me he had a plan. He knows I worry, wonder, and wait—he also knows I trust him.

We move forward, we change.

Lead on, Frankie.