A different kind of alarming …

It’s four o’clock in the fucking morning, but that part doesn’t matter, seeing that I haven’t had a 20 minute stretch of sleep since I got into bed at seven pm. You see, I’ve been awake dealing with diabetes alarms …. which ones? EVERY FUCKING ONE. Highs, lows, lost signals, suspensions, her phone, my phone, his phone and some how an actual constant siren alarm blasting 100 decibels into his fucking ear. No, of course he didn’t wake up to that … and yeah, it made me think this hell of a night was almost over because why in the fuck would someone have an alarm set like that if it wasn’t time to wake up for work? … I guess I’ll have to keep guessing until morning because it was 3 fucking thirty AM! 

Never have I felt the need to blow off steam in the middle of the night like this. The need to drive a buck twenty down a north country road with the loudest metal my subs can pump before they blow. The urge to fuck and get fucked, until walking is off the table for a week (on a table, even better). The need to run seven miles, as fast as I can, in 25 degree weather until I see stars and/or break a leg off. 

Oh, but instead I’m going to lay here, blood boiling, head filled with “what the fuck am I going to do with my life” thoughts because I’m not only the keeper of this little girl that has no idea how fragile she is;  I am also the vessel for another precious human life. I love them. I love them more than I could ever love myself. I love them more than getting fucked, driving fast, running at lightening speed or anything else for that matter. 

Here I am, justttt reflecting. A life of making all the right decisions. Working my ass off since I was ten, making sound financial investments, getting rid of every man that was bad for me, getting the best education, throwing out all bad habits with drugs, drinking, food and worldly possessions. Never falling apart in body, spirit or mind, no matter what came at me .. because I swore I wouldn’t be like them.  

Them? Everyone. I was better than everyone. My mom. My dad. His mom. His dad. Who is he? Doesn’t matter. All of them! I was better than all of them. I wouldn’t fail. I couldn’t fail. In fact, I was so busy not failing that I forgot why I thought they were pathetic failures in the first place. Until, of course, last night … or was that tonight? I can’t even google the answer to that one. 

There I was, whenever that was, in my fathers house. The one he has been throwing millions of dollars into, his entire life, because it was his parents. God forbid he live his own life and let down those dead fools, who were never even any good to him anyway. 

My kids are running around, begging me, every three seconds, to take some garbage toy home with them. Another floor ornament I can look forward to making disappear in about a day, once it’s been ignored, starting one minute after they, proudly, get me to agree to take it home. 

My dad isn’t even there. He’s in Massachusetts for yet another doctors appointment. My brother is there, taking care of the house and the business that can attribute to 97% of my father’s health issues in the first place. Yeah … my Dad, stubborn, unhappy and alone in a large, old house inhabited, crowded even, with wayward, halfwit failures in their own right. 

There’s my brother. It’s like looking in a mirror. Every. Single. Time. He’s on his phone, trying to get the internet to work, desperate to escape into his video games, but still happier than I’ve seen him in a million moons. He’s already escaped from his domestic responsibilities for the night and now it’s just us in the kitchen. Life was always good when it was just us in the kitchen. 

We aren’t any better than one another and neither of us are really better than our parents. Maybe we are a little different. That’s just it. We are different. Different kids of unhappy. Different kinds of failures. Different things to run away from, but barely. We feel comfort when we are together because when we are alone, without our families, it’s … different.

When you’re kids, you’re just kids. You are exactly who you are and you can’t hide it from your siblings. You knowww them. Standing in front of them, no matter how much time has passed, you will be stripped down to your true self. You see each other more than anyone else could ever see you. You aren’t parents. You aren’t home owners. You aren’t workers. You aren’t successful or worthless. You aren’t smart or dumb, rich or poor, pretty or ugly … you’re just you. 

When you get a little older you try to focus so hard on what you think you should be like. What you wish your life will turn into. Some of us work towards it. Others give up before they start. None of us really end up exactly, genuinely, ourselves. We are still searching a little bit to figure out what it was that we were fighting for the whole time. What if this picture we wanted our life to be wasn’t at all what it was cracked up to be? What if somehow we lost our true selves while fighting to succeed in a cut throat, judgmental world where our harshest critic is ourselves … Or, what’s worse, maybe we never tried. Maybe we thought we were good enough from the jump and we never allowed ourselves to change into anything better because we didn’t see it as better … 

I may never figure out what I want to do with my life. Certainly not before the next alarm goes off at five am, FUCKING WIND CHIMES whyyyyyy .. 

I feel annoyed. I feel blessed. I feel right. I feel wrong. I feel overwhelmed and completely in control at the same time. But there isn’t one feeling better than when it’s just us, alone in the kitchen. 

Time, Money, Heart.

I’ve always had this sort of obsession with looking good on paper, both literally and figuratively. Like yeah, it doesn’t hurt to look good in your license picture. I will admit I have delayed getting a picture taken on a bad day. Let’s be honest, they always end up just terrible, regardless. It was always HAVING the license that really made me smile. I remember when I got my first job, (not on the farm) at the ripe age of 13. I remember what it was like to have my first bank book far before that, at about eight years old. I remember my first paper checks (what are those, right?). I remember my first American Express Card. I remember filling out all the paperwork. God I LOVE paperwork. This feeling of paying bills, having a passport, license, registrations, applications, credit cards, asset accounts, insurance documents, diplomas and degrees; It made me feel like a person. Equity, organization and the ability to have the means to get something done has always been my most urgent focus in life.

I am more than positive that my need for being a success on paper was derived solely from feeling like a scattered mess as a child. Having no control, as a child, made me want to be an adult as soon as possible. I grew up too fast and took everything too seriously. As an adolescent, I strived for significance far beyond my years. I craved a significance that embodied a structure and control that I was desperately seeking in my childhood.

I have always felt that if you aren’t moving forward, you are moving backwards. I procrastinate for motivation. I reach further and further than I even need to so that I can catch up with myself. I wholeheartedly believe that the most fierce competition should be with oneself.

As I grow older not much changes, except that I’m not as worried with where the next money will come from. I don’t do this because I’m delusional. I do it because I now know what matters more. I know that if I work hard as much as I can, whenever I can the money will eventually come. Just as they money comes, it will go away. That’s the lesson in life about money .. it comes and it goes. Time, however, time just .. goes. You don’t get more time.

There’s always a point to working hard, making investments and being smart with money. There no point, however, in stressing about something that you can’t control. You’ll never be able to control the price point of the things that you need or want … so if you need it or want it enough … buy it and shut up. If your family needs it or wants it .. buy it and shut up. If you have a slow day at work, remember there will be busier and more lucrative days in the future, just like there were in the past, enjoy the pace and shut up!

I am old enough to have watched people die, too many times. On one’s death bed they are never worried about that slow day at work 15 years prior or how they needed to budget a little more on certain months. They never tell you about how they regret making too much money or too little money. No. If there are any regrets to be spoken of , they are the regrets of lost time and lost relationships. Rarely is it about what they look like on paper, but more how their families and friends see them in their heart.

I have small children. I do not have all the answers. I do know that I would like my children to be motivated and determined to make something of themselves. I expect for them to learn these things about money, time and heart on their own. Far beyond what I want to teach them about the importance of education, infrastructure and success; I want them to know that it is all going to be okay. Is that hippy of me? No. (and ew, never) I believe that my kids will be far more successful if they do not hear the adults in their lives being a slave to work, time, money, price points and the constant battle to look better on paper than the day before. There will always be more money … there will never be more time.

Tis the season.

It’s that time of year again … out come the long sleeve shirts and jeans, slippers and favorite hoodies. For many kids and many parents, it is the season where people finally give you break. They stop asking what that thing on your kid’s arm is. They stop wondering what is attached to their leg. After all, diabetes is an invisible disease.

This is the time of year I’m most reminded that this disease is everything but invisible. A type one diabetic mom never forgets that their heart and sole is running around with a bomb attached to their little perfect body. I mean that figuratively, while a pump, itself IS a bomb in it’s own right and should always be thought of as such.

This disease is relentless. The days that seem to make the most sense on paper are actually the days when diabetics and diabetic caregivers are the most baffled. Being the mother of a child who is on a treacherous blood sugar battle to the death is like watching an old wooden coaster in New England. You know the one .. it’s the best one at the park, but if you stand at the right angle you can actually see it shift as the car races the tracks. It’s a wooden roller coaster, so it’s okay, right? Yeah, let’s go with that. I guess there is a difference, the people on the coaster knew full well that the coaster seemed sketchy, yet they chose to take a risk, have fun and maybe not die for that five minutes of their life. No child, no parent, NO ONE EVER chose to have type one diabetes, there’s no way to step off that death ride.

In my very specific case, my child will never know a life without this invisible disease. For all intents and purposes it is, just that, to her, invisible. Sure, she sometimes has a tummy ache. When an alarm goes off she knows she can drink a juice box (which she loves!). She gets poked with needles often and understands that she is part robot and that’s just who she is.

This baby has never had to manage her disease alone. One day I will obviously need to teach her. I imagine it will be slowly over time, easy and natural … But here’s what I was thinking … what if I don’t. Crazy, right? More than crazy? Oh for sure!

Right now, I’m the one with diabetes. She has devices on her body, but I’m the one that feels the most emotional and mental pain. I’m the one with the sleepless nights, carb counting, meal prep, bag full of medical supplies and tools. It’s all me. Maybe it is crazy .. but wanting for that to become a burden on her is not something I look forward to. She is a fighter and she’ll be okay. I know this. I would just give ANYTHING to make this disease as invisible to her as this favorite hoodie season makes it look to everyone else.

Officially official.

Ten months of classes. No sleep in Saturdays. No idea what I’m going to wear, last minute, as I gather the kids and rush out the door. A full hour and a half of sitting in a chair waiting for one kid to come out of class as the other goes in. Antisipation for costume reveal. Sock buns. Hair spray. Bobby pins. Sock buns. Sock buns. Tights. More tights. “Where are the tights?” Application of mascra and eyeliner on a squinchy, unwilling little face. Dress rehearsal. Then this day … Recital day! The day they show us what they’re made of … the day they show us what this ten months was all about. Boy did they show me! My son moved !!! (100 times the step up from dress rehearsal) Oh my gawdddd he was so cute, it hurt. A true testament to the fact that a four year old will do anything for bubble gum ice cream. My daughter though … she can dance! Not just follow some direction, look at the older kids and copy. She actually did it! On her own, with pride beaming from her little face. I could actually see her determined mind communicating, confidently, to every muscle in her body. Then the biggest moment of all … when I get to hug my little star and watch the next half of the show with her, just us (and my dad, this year 💜). She is SO happy, so proud, excited and inspired. All I can see is that she’s SO grown up. She’s watching all her friends (I’ve never met a five year old with so many friends!). She’s cheering, clapping, hollering. It’s the official start of summer. Officially! I’ve had this moment with her for three years already and I’ll get to do it again, but not enough. When did my baby get so big? Why won’t time slow down? I’m in awe of this little human. I can’t wait to see what she’s going to do next, but if we could just slow it down a bit, that would be okay with me. 💓  #tinydancer #officiallysummer #thesemagicmoments

The perfect drug.

There’s this thing we all do, the most important thing we ALL do … MOVE. Moving seems like so very little, but truly, it’s the most important phenomenon. The ability to move is a gift that many squander. Whether you take moving for granted or you were a mover and shaker your entire life, every living thing feels that ache and yearn for movement when they have limitations.

I have been blessed to be acquainted with many great examples in life and I listen to them! My dad is a man that was born with congenital heart disease. He has had many a surgery and many a surgery complication. I have seen him on life support twice, once in a coma for a week. My father has organ function slightly higher than that of a cadaver. Still, every single day he is working, moving, producing and creating with all that he has. He once told me ” if you don’t use it, you’ll lose it.” My dad sure knows how to use it!

In this chapter of my life, the “life creating” chapter, I have lost the “it” my dad was referring to so many times. I lost movement by choice. I lost it because being pregnant was more important. I lost it because sitting around breastfeeding my miracles was WORTH it. I lost it because cuddles and book reading was worth it. I lost it because they ARE worth it.

Regardless of why I lost movement or whether it was worth it … it SUCKED to lose it. Something starts to eat away at me when I’m not moving, like an orca in a swimming pool. I crave movement like a drug.

I need to run like a kid, as fast as I can. To run like I’m running away from everything and everyone that bothered me recently. I can actually feel that moment when the endorphins start running through my veins and I become me again. No longer am I my circumstances. No longer am I that awful day I had. No longer am I that dreadful bill I can’t stop thinking about. No longer am I just someones mom, someones daughter, someones friend, sister, employee or wife. I am ME for ME with no one else to report to, feel responsible for or please. I am on that journey of movement all alone. The rewards are my own. My body is my own. Pores that have been soaking everything in and laying dormant open up and push everything out. They push out the harsh self criticism, the self doubt, the situational anxiety and the fear. I’m left with myself. But fresher. Stronger. Clearheaded. Brand new.

There is a healthy balance in life, a strength in getting what you want and being patient for what you can’t have (yet). Through this chapter of life, I have learned a patience that I never knew existed within myself. I have learned discipline, routine and structure in it’s most selfless form. I am amazed at what my body has accomplished and I love it more than I ever have. I know I will always crave movement, but more importantly, I have proven to myself that I am strong enough to be still.

 

 

 

Back Burner.

It was July 23rd 2017. A nurse handed me a 15 month old baby. She looked just like my baby. She talked just like my baby. Something was different. This was a BRAND NEW baby. I didn’t know how to take care of this baby. Everything had changed. Everything was different.

From the moment that they yelled out that my baby had type one diabetes, I didn’t care. She was awesome. Diabetes or not this kid was perfect.

After a week long stint in a pediatric ICU it was now my turn to figure out how to keep my child alive. This new baby came with accessories like no tomorrow. Walking out of the pharmacy for the first time looked like me walking out of Victoria Secret’s semi annual sale.

Overnight, I had to become an expert at injecting hormones into a tiny person that would die if I injected too much. It was like that newborn parent feeling you get when you wake up in the middle of the night and you think that you left the baby on your chest, but it isn’t there because you put it in it’s own bed before you fell asleep … except it was ALL the time.

It was laundry, diabetes, breakfast, diabetes, work, diabetes, shower, diabetes, snacks, diabetes, phone calls, diabetes, diabetes, diabetes, diabetes. I was advocating for her on the phone with insurance companies, specialists, doctors and medical equipment companies at least three hours a day. I even got 4 land line phones for all around the house to make all my time on the phone easier and so 911 would come to the house asap if needed.

Things got slightly easier and I was keeping her alive like a champ. She was always happy. However, keeping her alive wasn’t enough. No matter how close I got with her doctor; chatting until 10 pm on the land line (I inspired her to get one too, btw) and making constant changes to her dosing, diabetes was still weighing on me. I mean that literally! It felt like I was shackled and dragging a million pounds behind me everywhere I went. I had the constant thought that things weren’t as good as I wanted them to be. I worried about the long term effects of high blood sugars. It is a fact that high blood sugars in children before puberty creates no issue really what so ever in the long term. It was also a fact that my child was doing extremely well for her age. It still weighed on me.

I would wake up in pain, if I ever even went to sleep. I had cortisol running through my veins where blood used to be.  I was on the back burner and it was where I belonged. I was doing every single thing I could. My child was alive and so happy and doing everything any kid her age was. I started to fall into a fog. Every single time I looked at a blood sugar or had an appointment with one of her doctors, it was like I was in the backseat, a complete and total passenger in my own life. The doctors told me I was doing great. I said, “thanks”. I was tired. I was dragging ass. I didn’t think it was good enough and I wanted it to be better. I knew that I had to keep learning, keep reading, and keep alert, but all I wanted to do was crawl into a hole.

I was no longer looking forward to those two hour phone calls with her doctor. Not that I really ever “looked forward” to them, but it used to feel like they were helpful and I could see results in the changes we decided to make. The changes started to become so miniscule that they were barely worth the phone call. I felt like we were going around in circles, not a downward spiral, instead, a hamster wheel that I couldn’t escape.

I decided I would stop looking at her blood sugar as much as had been. It helped a little, but not enough. I was looking everywhere and anywhere that would take my head out of this endless battle with numbers, that really meant so little, but meant so much to me. I was becoming a self destructive, shell of a person and that back burner lit on fire.

One magical day I asked myself .. “Who the hell am I?” A failure? Hell no! “Someone who accepts “average” or “good” as enough?” No. It’s not enough! I decided no doctor and no God could help me fix my internal demons about diabetes and they certainly aren’t helping with her numbers anymore. It was all up to me and I know everything I need to know. I was scared before, but now I was ready! It was time for a miracle.

I self assigned diabetes to be about four things: MATH, timing, manipulation and nutrition. What do you know … those four things have always been my FAVORITE subjects. I picked up her pdm (insulin pump computer thingy) and made educated changes to her basal without any help from her doctor. I saw a change. I did it again. I saw even more of a change. I was finally in control, somewhat.

When we left that pediatric ICU almost a year ago they told me that it would take at least a year to acclimate to having a child with type one diabetes. I am still not acclimated but I AM challenged. I will not back away from a challenge that I have some control over.

Today we learned that my angel’s A1C is 7.2 which is down from 9.2 right after her diagnosis. I WILL make that number better every single time. Not for diabetes. Not for recognition. Not for me. I will get that number down every single time for that perfect baby because I owe her everything for sharing her life with me.

 

 

 

 

The C word.

It’s that time again .. Time to lay to rest another good man, lost to cancer. This one was a godly man, a coach (both literally and figuratively), a loving husband, a father of three and a grandfather to five. He was my neighbor my whole life. His middle son was my brother’s best friend growing up. His wife and my mother were pregnant with myself and his youngest son at the same time. There is still a photo somewhere of their bellies together as Morgan and I “met” for the first time. Later, Morgan’s wife and I would be pregnant at the same time. We don’t have that picture, but it happened.

As I heard of the loss of Matt I could only think of his beautiful life and his brave and determined battle against this disease. I am so heartbroken for his amazing wife who stuck by him every single day. I swallow so hard and can’t help but choke back tears when I think of Ben, Jake and Morgan and the pain that is burring your father. Not only do they have their own sorrow, but they are raising little children they must explain this to and regretfully watch as they try to understand.

I am really bad with this stuff. When someone I care about has been diagnosed with cancer I don’t look the other way but I do stay more silent than I would like. I pray. I hope. I build up this super hero in my mind that will fight this and come up on top no matter what. I don’t know if it’s the right approach, but it’s all I know how to do. I am scared. I am confused. I am anxious. Most of all, I am angry. I am so angry because it just isn’t fair.

Cancer is my biggest fear. Not having any control of your body as a sickness makes you weak, unrecognizable, dependent and scared shitless is the worst thing! Now, of course, sharks really upset me too. What is worse than being eaten by a shark and drowning at the same time? No thanks. But you know what .. That’s why I stay the hell out of the ocean.

Cancer is not so easy. You can’t just stay away from the ocean and not get it. You don’t get it because you are the best person in the world, or the worst person in the world. You just get it. Sure, you shouldn’t boil water in a plastic cup and drink it, you shouldn’t eat bacon every single day, you shouldn’t smoke or lay out in the sun all day, but you could and you might be just fine. My brain has a hard time wrapping that up into a nice package.

I want to fully understand everything, understanding is powerful. I can’t understand why a mother of seven, nursing a baby under a year old would black out at a family barbecue, find a brain tumor and be dead just a few months later. I can’t understand why a 28 year old veteran who barely survived an IUD while fighting for his country would then get leukemia and die of phenomena, after a stem cell transplant. I can’t understand why a woman would go to the doctor 10 weeks pregnant and find out that she has cervical cancer and the best thing to do is abort her baby and fight it aggressively, possibly leaving her with no chance to carry another. I can’t understand a cancer battle that was seemingly going well until a platelet loss turned into a massive brain bleed. I can’t understand these stories as much as I can’t understand how a man can smoke a pack a day for his entire life and never get cancer.

I wish I could go back to when I was a very small child and all I knew about cancer was that you got sick and lost your hair. Remember that? When you thought that they lost their hair because of the sickness. As a kid you KNEW you didn’t have cancer because you had hair.

I met Corey when he was 14. He had hair. He made out with my friend Faith. He jumped on the trampoline (maybe a little less than us). He signed my tree house in black permanent marker, just like all my friends did. If possible, his clubhouse was cooler than my tree house. Him and Josh, my best friend, would steal dirty magazines from their dads and look at them in the clubhouse. I remember going through his cd collection and asking why he had Britney Spears cds and he said “I like to have all kinds of music just because everyone likes different things.” He was wonderful. That was his last summer. His dad invited Josh into his room after he passed away to see if he wanted to take anything. He had left his room untouched. Josh vividly described to me how a pair of Corey’s pants were on the floor, as if he had just taken them off, as if he was still there. We all wished that we could have grown up a little slower and learned a little later about how sad and unfair cancer really is.

With the recent passing of Matt and so many others, all I know for sure is that no matter how much we all try to feel in control and feel like we understand, we will never truly be better off than when we were young children and everything seemed so simple.

Rest Peacefully ..

Matt Locke,

Clare Oliver,

Corey Hillsgrove,

Tony Lance,

Ryan Goggin,

Nita Donnell,

John Bowles,

Midge Burnham

                         FUCK CANCER.