Life As It Becomes More

The holidays when you’re 50 are much different than the holidays when you’re, let’s say, 30. I’ve had years in between where my enthusiasm ebbed and flowed. This year I was eager to get the Christmas tree and Veruca was equally excited. The two of us drove to the tree farm and there were about a half dozen families toting dwarf trees to their cars and the pre-cut Frasers were, well, NONE. Anyway, a google search revealed another tree farm in our area I’d never even heard of and let me tell you right now – the tree I reluctantly chose (reluctantly because the branches were upright and tightly hugging the trunk) was the Most Beautiful Tree I’ve had in years.

Anyway, my 50-year-old enthusiasm was limited to the Christmas tree and the stairwell I decorate with garland and baubles every year. The artificial tree we put up in the rec room never made it out of the box. The Christmas Village ceramic houses never made it out either. We didn’t decorate the outside of the house. I’m not sorry. I just didn’t have it to give.

There’s an old quote: “just don’t have it to give.” Came from a Gemini male I once shared a home with in my 20s, who was full of prolific bullshit like statements about me being “uptight.” I learned to cringe when these statements flowed from his or, even years later, others’ lips. But today, older and wiser, I realize that the former statement is a confession moored in self-awareness that is more positive than negative.

I’m trying to avoid the inevitable cliché that comes when one pontificates about life and becoming conscious of what really matters when it happens at the turn of a new year. That it’s also a new decade does not have an elevated significance in my particular case. Unless we’re talking about my new decade.

Anyway. My friend lost her dad in December. The memorial service was earlier this month and I made the hour-and-twenty-minute drive to honor him and support her. Our families have an interesting history.

We were both born and raised in the same town. Like I think it is with most folks, the town is one which is spoken of with both reverence and disdain, often in the same breath. Our town is, uh, town. The town isn’t exactly small, but so many people know each other in a seemingly impossible way that it’s almost incestuous. (Okay not really.)

So… my mom worked with T’s grandmother before I was born and for a couple of years after. My mom somehow always knew T’s parents too. My dad and former stepmother were friends with T’s aunt and uncle (her dad’s brother) – which is where it gets really weird because I remember a time when they took me with them to the aunt and uncle’s home and there were other kids there that I played with. It wasn’t until many years later, when two of those kids (T and her brother, now adults) were working at my mom’s restaurant, that I realized that we had met so many years before. (Do I need a diagram?)

In another strange twist, thanks to Facebook, I noticed that T was friends with someone I went to high school with. T didn’t attend the same school as us, and she is also five years my junior. When I finally remembered to ask the friend how she knew T, it turns out her mother used to work for T’s father.

Anyway, back to the memorial service. Many, many people came. Mom met me there. We stood in the line to see the family, which was really long and moving like a backwards river. Seriously. I found my patience waning fast as folks were stepping out of line to greet and hug others and then the line would come to a standstill until they stepped back into the line. And there’d be this huge gap between people that ramped my anxiety to blast-off.

This well-dressed little old lady with impeccable hair and makeup in front of me stopped moving altogether as she stood staring at her husband who had left the line to chat with old buddies from somewhere. I pondered the possibility that he was deliberately ignoring her gaze. And then was struck with the urge to scream, move the fucking line! But thankfully I’m not yet old enough to pull off shit like this in public, so I said it in my head.

The line went on like this for about 25 minutes and I was beginning to wonder if the services would start on time. (Spoiler alert: they didn’t.) At one point when I thought I’d hit the peak of my anxiety and intolerance, T and I made eye contact and for a brief moment I was sure I felt her. There’s something between us that can be read as instant understanding sometimes. If I ever had a sister, she’d be it. Not because we might be alike, but because in many ways we’re not and there’s this innate understanding that cannot be explained. There are things over the years we have shared with each other that with others might be a, “huh?” that for us is, “haha, YES.” And she is no nonsense. You better buckle up because she will tell you straight up Truth.

So we moved through the line and sat down, which is when my entertainment really begins. The older folks with the bouffant hairdos and the outfits and the jewelry. Familiar faces too (it’s our town, after all). There was this one man who clearly was either wearing a hairpiece or using Grecian formula, with a pencil-thin mustache, and was a dead ringer for one of my family members.

The photos on the monitor could easily have been photos of my own family … the clothes, the hairstyles, the furniture, the backgrounds. There was a picture of T’s dad as a boy on a pony. We have an identical picture of my uncle. It’s all this weird six-degrees-of-separation that isn’t limited to just our town, and it’s so very cool.

I don’t know how all this segues into my thoughts about life and where it’s going and what matters. I suppose funerals do that. T’s brother spoke eloquently of time spent with his father and the value of memories…. Though he didn’t say it quite this way, that we have an obligation to impact our children with memories the way our parents did for us.

For the first time I didn’t cry at a funeral. I don’t know if it’s because there wasn’t a profound sadness permeating the room or whether I drew my cues from T, or whether there was larger, deeper impact poking at me. I left there feeling like I needed time to process and reflect on the feelings circling like birds overhead.

Much of my twenties was chaos. Not in the literal way… just chaotic movement from place to place, person to person, living in the moment (sometimes self-destructive) in anticipation of “what’s next.” Never quite sure of myself while being fully myself and lacking the awareness to understand why I did what I did and how not to do certain things again.

The thirties introduced a long period of change and more chaos which turned out to be more destructive even than that of my twenties. The juxtaposition of becoming a parent and loving something more than my own life while simultaneously fighting for my identity. It was a period of survival. I’d forgotten that I had choices. That I’d always had them and that somehow I’d relinquished them to someone else, who had no business deciding for me.

The forties: a rebirth. A remembrance of me. The final hitting of a wall; a wall I couldn’t climb or go around. The revelation that the only choice I had was in fact no choice at all. I had to move forward and away from toxicity and vicious words because the only thing I could change was how I chose to live. And look where it got me!

The fifties have just begun. I embraced that birthday with the spirit I have always had. I’ve been living in joy and peace and contentment for the last 9 years. I couldn’t ask for anything more. Except for less debt and a swimming pool.

Still, there’s more. I want to live in the moment, every one, but this time with the awareness and connection I didn’t have 25 years ago. Less distracted. More tuned in. And I knew this before I googled what it meant to dream of thousands of cats running around my house.

 

 

 

To be continued….

10 Years of Diabetes

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V’s 10-year Lilly Medal

Ten years ago, on June 17th, I went to sleep on my last night of uninterrupted sleep. Ever. Ten years ago my 2-year-old daughter woke up lethargic and drowsy. Ten years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last ten years…

My 2 year old was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent 8 hours in the ER, receiving her first dose of insulin and getting stabilized, before CHOP’s transport team picked her up. She spent a total of five days (two in PICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with multiple-dose injections of fast-acting (Novolog or Humalog) and long-acting (basal – known by Lantus or Levemir) insulins for the first year. It’s not easy to give injections to a two-year-old.

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and our primary insurance paid only $1,000 of the nearly $6,000 pump. Medicaid paid for the rest. It’s not easy to insert infusion sets into a three-year-old.

She has endured over 50,000 finger sticks, roughly 2,190 insulin shots, approximately 1,700 site changes for her pump, and 10 complete metabolic panels. It’s not easy to get a small child to do all of these things.

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in JDRF walks, attended one gala. My mom, her restaurant and her wonderfully generous guests have raised over $10,000 for the JDRF in the last 3 years.

I’ve “met” dozens of fellow moms and dads and other Type 1s. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with  hypothyroidism – diabetics are more prone to additional endocrine disorders – three years ago, and has added another medication to her arsenal. There are more blood tests to monitor this.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child with a life-threatening disease who requires extreme vigilance away from home.

I wake two-three times a night to check her blood sugars, to make sure they don’t go too high or too low. Well, except for the nights she spends with her dad… though I still wake up spontaneously around 3 a.m.

I participated in the development of my state’s newest Guidelines for Diabetes Management in Schools, which was recently released. This was huge. I’m grateful for the opportunity to contribute to something so important.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve let her go. This is the biggest development in our ten years on this unthinkable journey. I’ve let her go to do things and go places where I’m not constantly “helicoptering” and trusted that she’ll do okay on her own. This is a process that will probably never end. The worry will never go away.

Ten years later…

Children and adults continue to be diagnosed with type 1 diabetes with no definitive answer as to why. Several children have died due to undiagnosed diabetes, mistaken for the flu or other illness, and discovered in DKA (extremely high, life-threatening blood sugars) and too late. Also, people with diagnosed diabetes can and have died from both extremely high and extremely low blood sugars.

We in the diabetes community continue to struggle with the stigmas and misconceptions surrounding the disease, which is often confused with Type 2 diabetes and the subject of many a misplaced joke.

CGMs are widely used today, which allow a virtual window into the minute-by-minute changes in blood sugars. And – they can be connected through the cloud to parents’ cell phones, so those numbers can be seen in real time whether they are away from you or just down the hall. V refuses to use this because it requires another “site” for a needle.

The Artificial Pancreas and Bionic Pancreas are systems under development and currently being tested that will ultimately manage blood glucose levels without constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing insulin-producing cells (beta cells) which would  effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. This, too, is in clinical trials.

Veruca, at age 12, has no memory of life before diabetes. But 10 years later, she “hates diabetes.” She just wishes she was “normal.” “Why doesn’t O have diabetes?”

Ten years later, she counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her. She is easily annoyed with my constant nagging about testing and bolusing, and eating things without doing those things first. This will be an ongoing battle for us.

Ten years later…

We’re still waiting for The Cure.

**For more information, the Diabetes tab above contains previous posts and background.