Searching for my thankful…

I can fake it. I will post on my facebook wall a picture of a big fat turkey & all the appropriate thankfulness words. I will ‘like’ the other posts of Holiday wishes and smile my way through the family dinner. Here in the blog I am going to be honest and admit-this year I am searching for my thankful.

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This year, I feel an urgency I have never felt before and desolation I have never experienced. I have always been a fighter, a glass is ½ full girl, a believer that hard work and determination will save the day.  My beliefs are getting clouded by medical bills, changing medical coverage, and the fear that what Frankie uses to manage his diabetes–so successfully since August, we may not have access to come 2014. These challenges will have a direct impact on my kids—a freight train coming full speed ahead and I don’t think I can derail it-not this time. I am trying-counting insulin pods in the middle of the night, snagging supplies from other diabetic families who have a surplus, calling manufacturers–trying to figure things out—but I can feel the pressure of running out of time

798205_346230538844543_1008918039_o (1)A visible ‘thankful’-I see the positive changes in Frankie since he started on the Omnipod in August. He is talkative, laughs a lot, and goofs around- just like the days before diabetes. We haven’t seen this Frank since June of 2010. He physically feels better on this insulin infusion system and it shows—and whammo-the punch to my ‘thankful’- in 2014 we may not be able to provide it for him and that hurts.  Are there other pumps or methods of dosing insulin? Yes—but the Omnipod is the only ‘non-tethered’ pump. Other pumps have tubing from the pump itself to the infusion site-which have not been successful for Frankie. Can we go back to injections? Yes—we can go backward— he can stay alive that way-but he won’t feel as good as he does now-it is harder to maintain a good blood glucose balance on shots for Frankie– but we will have no choice if we can’t work it out…and my heart will break for my boy.

So this Thanksgiving, I am trying—I can recite the usual—I am thankful for my husband and kids, our family, our friends, our jobs–but my heart just doesn’t feel it. I can hear my mother saying “put your hand to the plow and don’t look back” her favorite Bible verse—and I am trying—to forge ahead and face things as they come—they are just getting thrown at me all at once and I forgot my catcher’s mitt. Are there people worse off than us? Yes-I get that—everybody has a hurt they are dealing with—but that doesn’t make me feel mine less.  Everyone has challenges to face-but challenges are so much easier to handle when they only effect me—not my children.  I don’t want turkey, stuffing or pie—I want our insurance to remain the same in 2014 as it was in 2013. I don’t want to pay more—and get less.  I want a Thanksgiving miracle.  So I will pray, as I do every day-for us and for all of you. Everyone needs a Thanksgiving miracle—and I hope we all get one.

I will go make green bean casserole now, get ready, and go see the family. I will smile, make small talk, and have a glass of wine.

and… I WILL keep searching for my thankful.  I am determined to find it.

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When diabetes hits…diagnosis and beyond…

We are in our fourth year of living with our uninvited guest-type 1 diabetes. We talk about diabetes alot…all and everywhere…in an effort to get people who do not live with diabetes to understand…and we hope that through public understanding will come an easier life for people who do live with this disease and a ‘heads up’ that diabetes could be YOU or YOURS at the next turn of life’s page.We are most likely-annoying about it–so here is a disclaimer–we are going to keep being annoying about it–no apologies–because now we know- what we didn’t know 4 years ago–and we want to make sure YOU know too–just in case.

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In June of 2010 we were celebrating Frankie’s graduation from Kindergarten and gearing up for that amazing journey to come–full day school! Happy, carefree times! At the end of June Frankie came down with the coxsackie virus-no biggie right?--just a few days of illness and back up on his feet.(or so we thought) Then came July-where Frankie grew a few inches and lost a few pounds. As parents we looked at him and saw a baby turning into a boy-losing his baby fat, growing, and looking just like his Dad at that age. Six years old- taller than most and lanky. By the end of July Frankie was changing-didn’t want to swim, play outside, or even have friends over. “Oh my,” we said, “are you getting worried about full day school?” and we talked to him about how awesome it would be to go to school all day.  We used to go for a walk every night back then–Mom and the kids–our bonding time. Frankie stopped wanting to go and we said “Now c’mon, you are six, get your sneakers on–you can’t stay in the house all day!” (Insert HUGE guilt here! ) Days rolled by and then August! Frankie started drinking water like it was going to be outlawed at any minute, and using the bathroom–and using the bathroom—and using the bathroom—you get the idea. These are all warning signs of Type 1 diabetes-but we did not know. The  medical community is unsure what exactly triggers the autoimmune disease Type 1 Diabetes. They are not sure what causes a persons immune system to attack the beta cells of the pancreas and shut down insulin production, but they believe it can be triggered by a virus- like coxsackie.

August 22, 2010. Our annual family clambake. Both sides of the family for a day of fun, laughter, and clams. The family rolls in- each one saying the same thing–“My he is soooooo skinny!” “Give that boy a sandwich!”  and “hey, why don’t you feed your kid anymore?” By mid day I wanted ALL family the hell out of my house! I didn’t see it–I just saw my boy–sitting alone in his room with his legos–looking so sad—but I didn’t see illness–didn’t see DISEASE. (Insert more guilt here!)

August 23, 2010–that day a horrible memory – the day that changed all our lives forever. Frankie woke up in the morning vomiting- a gross brownish black substance, holding his head in pain, and saying his whole body hurt. A rush to our local urgent care, where I work–thinking the whole ride over–I bet he has Lyme disease. First up–a Doctor on his very first day at the practice. He takes a look at Frankie, looks at me and quickly says “I’m going to get Dr. C.” (the owner & my boss) I thought to myself–this can’t be a good sign…and in comes my boss. I knew, just by the look on his face–this was bad. In the kindest of ways Dr C. broke the news…”this is type 1 diabetes.”

In truth, I don’t remember most of what happened after that as we got on the roller coaster called life with Type 1 Diabetes. What I do recall are doctor visits, classes on how to keep Frankie alive and more doctors visits. I remember lots, and lots of blood draws, and being told to feed him, as much as he wanted to eat–and in the next sentence being told about 40 carbs per meal, ‘unlimited’ snacks (snacks with no carbs), how to dose insulin and juice boxes for an emergency. I can hear the doctor talking about the many ways this can kill him and in the same breath telling us “we can do this.” In my head I can see us- practicing giving shots on each other–Mike and I–injecting saline into each others arms, and I remember crying, crying, crying.  I remember Frankie’s face- sitting on Mike’s lap–when the reality of this disease, and his ever after life with it–finally hit him like a ton of bricks. I remember the sound of my husband crying in the middle of the night when he thought no one could hear- after being so strong though all the crazy, for the rest of us. I can see Rachel’s big blue eyes, filling with tears, so scared, when we dropped her off at Grandma’s to head to the Joslin Diabetes Center. What I can’t remember is how we got through those first weeks, and how we mustered up the courage to put him on the school bus 2 weeks after diagnosis- instead of wrapping him in the cocoon called ‘staying home forever and ever where I can watch you like a hawk.’

I’ve written about the rest- taking diabetes to school and the problems with that, the unsolicited advice of strangers, the bad jokes, and horrible stories of blindness and amputations told to my son. Those early years when we weren’t so strong, but we were determined.

I see now, 4 years in, the brilliance of a little better than average report card being brought home by a boy who gets to school late sometimes, misses school altogether sometimes, and feels rotten a lot of times and still plugs through his day. A boy who manages his diabetes in school with just a cell phone and self confidence.The patience of a girl, who often has to ‘wait for diabetes’, miss school herself, miss parties, cancel sleepovers and does all this without complaint. A girl who tries out for soccer, plays the clarinet, enjoys time with family and friends-but would drop it all in a heartbeat for her brother.

In 4 years I have seen progress. A school district that didn’t understand how serious this disease is–every minute of every day–4 years ago–now provides diabetes education to their staff and have written policy to provide for glucagon injections in case of emergency to keep children with diabetes safe at school. A town, recognizing that diabetes is a misunderstood disease and myths about it are everywhere, trying to change that–one blue light and one blue ribbon at a time.

In these 4 years we have felt the love of family and friends–who can’t take this away for us–but they want to…and with every hug, and act of kindness–they make this life with D easier.

The T1D ride is long and winding, torturous and maddening–but in it–is exhilaration at seeing the SUPERHEROS that are our kids-Rachel and Frankie–taking diabetes by storm and dragging the rest of their town onto the roller coaster with them.

We hope diabetes never hits for any of your families–but we hope–if it does–you know the warning signs because you asked about that blue light, that blue ribbon, or we annoyed you with all our diabetes talk.

We hope…if diabetes hits…you will be ready.

Saluting the BIGS and the LITTLES in BLUE-World Diabetes Awareness Day…

Today is November 14th.  This day could be your birthday, anniversary, or just Thursday-but to 26 million Americans living with diabetes—it is a day to spread the facts and fight the myths that surround all types of this disease. November 14th is World Diabetes Awareness Day.

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There are a lot of fantastic organizations-big organizations-that work hard every day to improve the lives of people with diabetes, work towards a cure, and help educate the world about all types of diabetes. You may or may not know their names…The American Diabetes Association (diabetes.org), JDRF (jdrf.org), The Joslin Diabetes Center (joslin.org), The Diabetes Research Institute (diabetesresearch.org), The Faustman Lab (faustmanlab.org), and many more.  We are thankful for their hard work and dedication to all those who live with diabetes- but  today we also want to celebrate the little guy—the people you don’t know—who are out there –working hard to raise awareness and educate the world about this dreadful disease called diabetes. Working hard to help others.  We can’t name them all—so we salute these few—in honor of all.

The Henson Family: Camillus NY.

This BIG HUGE Billboard says it all…

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This billboard not only raises awareness of diabetes and gets people who see it to google ‘World Diabetes Day’ –this billboard shows LOVE. Love of a family-united- for one of their own who is 10 years old and living with type 1 diabetes. A family-taking the time (a lot of time) working together to create this fantastic billboard, heft it out into their front yard and IT LIGHTS UP for goodness sake! Just spectacular! The Henson’s also gave out diabetes informational flyers with blue ribbons attached and asked people to tie those ribbons on trees for the Month of November. If you are lucky enough to drive through their hometown this month—you can see the love, waving with the trees—all the ribbons!

Gabriella McLaughlin: Dewitt, NY

To say Type 1 Diabetes has been unkind to this wonderful 18 year old is an understatement.  Diagnosed when she was just a baby—diabetes has not played fair with Gabriella. What would make me cower in a corner, hide under my blankets, and just give up—has only motivated this young adult to keep fighting the daily fight. Gabriella volunteers her time with many diabetes advocacy groups, she is a caregiver to young diabetics—a lifesaver to parents of children with diabetes—because they can safely leave their child with Gabriella—because she KNOWS. No explaining shots, BG checks, glucagon, and more. Gabriella is the Mary Poppins of Diabetes! This November-Gabriella started a facebook page for people in CNY who live with all types of diabetes. She wants them to have a place to share information and ideas, to celebrate the good days, and help each other through the bad. Gabriella puts her own struggles aside to HELP!

Kelly Wright- Badgley and Ingrid McCurdy: Mom’s on a MISSION in Central NY

These wonderful women are Moms to children with Type 1 Diabetes. Sometimes people with diabetes can’t feel the fluctuating highs and lows of their glucose level. This is dangerous and life threatening. Such is the case for their children. What to do? These Moms got busy-doing research and raising funds to provide their children with a Diabetes Alert Dog. ( D.A.D.) These dogs are amazing—they can smell a fluctuating glucose level in the early stages and alert their owner –so they can check their BG and correct as necessary before an emergency happens.  Kelly and Ingrid did not stop there.  Their children now have their dogs, and these moms are still raising money to pay for them (it’s not the dogs that are the expense—it is the extensive training they need to do their work) they have begun reaching out to other families to help them learn about these awesome D.A.D.s and help them raise the money needed to bring one home to their children.  Kelly and Ingrid are saving lives— one dog at a time.

So today, as we commemorate World Diabetes Awareness Day, we say a HUGE THANK YOU—to the BIG GUYS and the LITTLE GUYS—working hard everyday to make the world a little smarter, a little better for people who live with diabetes, their families and friends.

Saluting the BIGS and the LITTLES in BLUE this World Diabetes Awareness Day!

You’ve heard the BAD…here is some GOOD…

All parents are trying to raise responsible little humans. We want them to make good choices, good decisions. If you are a parent of a child with diabetes –double, no–quadruple that and multiply it by a million. We want our children with diabetes to make smart LIFE choices and smart DIABETES choices. 

My son is 10. He has had type 1 diabetes since age 6. The first night home after diagnosis my son creeped into the kitchen and ate an entire box of fudgies. Bad choice…but he thought he was never going to be able to eat a fudgie again! We have come a long way since those crazy first days after diagnosis.

Frankie now self manages all of his diabetes care using an Omnipod insulin infusion system. The system does the carb math for him–so he doesn’t have to rely on us, his school nurse, or any adult regarding his management. This scares the crap out of me and makes me proud all at the same time! 

Let’s talk about Frankie’s awesomeness! Frankie knows how to adjust his insulin dose based on an upcoming basketball game, math test, or growth spurt. Frankie knows that pizza will have a slow reaction in his system and he regulates his insulin to cover that late pizza blood glucose spike. When I think it’s too much insulin for a dose–he says “I know what i’m doing” and damn he is right every time! 

Parenting a child with diabetes is letting go of the reins and being amazed by your child’s ability to know how to get it right! Easier said than done! 

Today-Frankie’s Omnipod became detached–it got knocked  and came undone. He called me–told me what happened–and I went right to school to replace his pod. He was sitting with one of his teachers–face like a stone. The teacher left the room and he burst into tears–scared he would go into DKA because his pod was not delivering insulin. Frankie knew right away that his pod was compromised, called me, so he was never in danger. He did what he had to do and kept it together until I got there. 

I don’t know that I would have the strength that he had to keep from crying for so long. He was a ROCK until I arrived. 

That is resilience, strength, and awesomeness. 

We changed the pod, he stayed in school, life went on. 

the BAD and the GOOD.