Just An Echo

The pronouncement was made and there was much anger and yelling and screaming, but strangely, no tears. There were no tears. Seldom were there any tears. The dish rack in the kitchen was wiped from the counter, shattering to the floor. Always, something had to be broken.

Hearts were pounding, all of them. One for loss, one for freedom. Two more for the uncomfortable familiarity.

It was not much different than any of the other times. She managed the distance between them, not fearful, but vigilant. This time there would be no backing down. This time, when the words came out, she would not take them back.

If he lunged at her, if he closed the space between them, spitting familiar words in her face, she would not back away. She would not look away. She would meet his eyes.

No more. No more name calling. No more criticisms. No more destroying personal property, space, private journals. No more threats. No more physical threats. No more empty apologies. No more gaslighting. No more.

***

In a tumultuous life and the changes it brought, accusations flew. False accusations. A pot, calling the kettle black. Misdeeds and affairs of the past denied, but known. Promises to change, promises to commit to things promised long before and long ignored. Threats to destroy. Demands to end friendships.

Soon after, she refocused her efforts on the time ahead. What must be done. How to accomplish it.

Interference from an outside, and separately invested source, compelled her to withdraw from much needed support. And what followed next – a song. A song, shared on Facebook, meant to express disappointment, sorrow, frustration – cut her to the core. Fade to Black.

An inconceivable ache in the soul, opened an old wound long ago healed. The tears flowed freely. Another kind of loss flooded back to her, one healed but never forgotten. A loss not wanting to be felt again.

So much to be done. No easy way out, but a way out – the only way now.

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Where I Wake Up Next to Another Man

Probably not the best followup to my last post but, as they say, what happens tonight goes on Facebook tomorrow.

We planned a small gathering of friends and our parents, and Mother Nature planned a winter wonderland to otherwise shut down what would have been a house-quaking party. Okay, not really a house-quaking. But nearly everyone north of the Mason-Dixon bagged out due to the icy road conditions and the danger of driving home later.

On the menu: lasagna with hot Italian sausage, white vegetarian lasagna, pulled pork, Cuban sandwiches, white bean and spinach soup, mixed greens salad, buffalo chicken dip, chips and salsa, and the standard crudité. The in-laws, who were bringing the cheesecake, opted out of the drive too – so Todd pulled a homemade apple pie out of the freezer, and thank God someone brought brownies and a wicked cheeseball that would put any fancy wedge of cheese to shame.

For such a small crowd, we ATE. Even the crudité, which is always at a party and really – who wants to eat raw vegetables at a party? Would you like some chocolate cake layered with chocolate mousse? Oh no thank you, I’ll just chew on this chunk of raw cauliflower.

And, like anything we do in this house which ends up with all the appearance of half-assed – even spending all of Friday night prepping food and 4 hours Saturday prepping the house – the guest room was still unmade and the vacuum lying on the floor next the bed, which to you sounds like no big deal but the room was doubling as a play area for the Oculus.* The artificial tree we put up in the rec room was assembled by Opac and my brother in the final hour, with only lights and no ornaments. (There are still no ornaments on it.)

One of my Christmas boxes with decorations in and on top of it, remained in the living room next to the couch the entire evening. In fact, it’s still there. The wreath I made last year with Christmas balls was lying on an accent chair behind the couch, apparently awaiting hell to freeze over until I could repair it and hang it on the front door.

We have four bathrooms in this house: the master bath, the hall bathroom (aka the kids’ bathroom), the powder room off the living room, and the bathroom downstairs in the rec room. The latter is desperately in need of a massive renovation. As for the hall bathroom, anyone with kids they don’t share a bathroom with can attest to the horrors within the confines of this room. It wouldn’t be a normal day if that toilet was working, and this evening was no different. Thankfully, no one attempted it. Well, except for V who will continue to use a clogged toilet until it rivals the look and feel of a port-a-potty.

Todd found some time to throw some lights on the two trees against the house, which at the time I thought was great until the next day when I saw that a tree and a half were lit. I said, Todd – what happened to the lights? He said he ran out of lights and forgot to look for another strand. And guess what? There’s still a tree and half a tree with lights on them.

I’d work on that today, but it’s freakin’ 19 degrees outside and I just spent 10 minutes righting the recycling can in gale force winds, collecting all the cans and cardboard that blew into my neighbor’s yard. And, if she’s reading this – Kay, I’m very sorry if I missed anything and also I apologize for any strange noises you may have heard in the backyard on Saturday night.

And, while we’re on the subject – I put the brakes on two drunks and one twelve-year-old with a recorder who wanted to go caroling, so neighbors – you’re welcome.

Anyway, the guests. We had a low turnout which was actually nice because of who showed up. The staggering of the arrivals made for pleasant and equal conversation. We got some chat time with one of the couples from our San Francisco trip, and later with a couple Todd used to bowl with whom we shared our Pittsburgh experience, and the last couple were new to me so I had some time to chat with them towards the end before Todd sat down next to me and I promptly passed out fell asleep.

Yes, I had wine. I had wine, because hello! It’s a party. I wasn’t drunk, not even once, but I was definitely pacing myself through food and wine and water until sleep overtook me in the presence of two people I’d only just met. I’m so good with first impressions.

And the next thing I know – I woke up at 3 a.m. on the sectional by the twinkling lights of the Christmas tree and the hearth, the lamp next to the couch still lit and the television still on at a volume reserved for rowdy football games… and the room empty but for Robbie, who was asleep completely upright, snoring like a bear at the other end of the couch.

 

There Was This Boy

So there was this boy, I saw him walk by me once and he took my breath away. I couldn’t avoid his eyes or the chemistry between us. He asked me out once and I said yes, and we went out again, and again, until he owned me. I never knew love like that, and it was precious and intense, and I never forgot it or how it made me feel. Life took us away from each other, but the years went by and I never forgot December 11. Never. My soul remembered the sound of his voice, and the smell of his skin. I thought about him, wondering where he was, what he was doing, and got lost in fantasies about reuniting with him. And then just seven short years ago, I found the answers to the unending questions I had, and the true meaning of “soul mate.”

There was this boy – he imprinted on me, so that I would never forget him. So that I would spend years blindly reaching for that bond with others. I never forgot December 11. That was the day God gave him to the world, to not only one day love me, but to do great things and to selflessly give of himself to others.

There was this boy – now a man – who never forgot me. I am so blessed to know and be loved by him again – in this, our second chance to get it right. There was this boy – who completes me in a way I could only have dreamed. He’s not perfect, but he is perfect for me… and he is mine.

There was this boy- who stole my 15-year-old heart, and reclaimed it more than 25 years later. He took my breath away. I never forgot his eyes, the sound of his voice, or the smell of his skin. He never knew that I thought of him every December 11. When he took my hand in his again – it was like coming home.

There was this boy – I loved him then, and I love him more than ever today.

Happy Birthday to my first, my last, my one true love!! I love you!!

AND, in case you missed it… there was this Birthday Poem from a few years back.

 

 

How Did You Know?…. As Asked By V

Riding in the car with kids always produces some interesting conversations. This wasn’t one I was expecting, though V is full of questions about everything these days. I also didn’t expect the raw emotions to bleed through me as I remembered it like it was yesterday.

How did you know when I got diabetes?

Well, for about a week you were drinking a lot, and soaking through your diapers – which isn’t really normal for babies to do. They’d get so wet that they leaked in the bed and I had to change the sheets. You couldn’t get enough to drink. You’d fall asleep with your sippy cup in your hand at night. And I wondered, “what causes thirst like this? Something causes this. What is it?” (Lots of guilt here, I left unsaid. Including the retrospect that I’d also noticed she looked thin in the bathtub one night, and wondered if she always looked that thin? Was it just my imagination? Again, lots of guilt here.)

And then we went to a birthday party O was invited to, and you wouldn’t eat anything there. You were always a clinger, but I thought you’d at least have cake. Nope. Wouldn’t eat. Just drank from your cup.

The next day was Father’s Day and we went out for ice cream. You didn’t finish yours. You didn’t want it.

The next morning, a Monday, you were very, very sleepy and wouldn’t eat and slept on my lap all morning, almost until 11. And then when you woke up, you were breathing fast and shallow like, [I demonstrated this to her]. That part was scary. I called the doctor, and they asked me to bring you in right away.

So the doctor told you I had diabetes?

The nurse tested your blood sugar, and Dr. Watson came back in and told me you had diabetes, and that you had to go to the hospital right away. They were going to send us to Hershey, but first we had to go to the local ER. I told Dr. Watson I wanted you to go to CHOP. You had to go to the ER first because your blood sugar was so high and you were dehydrated and in DKA, and CHOP’s team wanted you to be stable before they could pick you up.

Were you scared?

I hesitated a moment, collecting my thoughts, feeling almost ancient tears welling up behind my eyes.

Yes. We drove over to the ER and they were waiting for you. They tried placing you in a bed, but you were hysterical and reaching out for me to hold you. But you were also dehydrated and exhausted, so you didn’t fight too much. They started IVs in both your arms, so that you could have fluids to help you feel better; they attached little sensors to your chest and body to monitor your heart rate. I sat on the bed with you and touched you. I kept my hand on you. You’d fade into sleep, which was a relief at the time.

Was dad scared?

Yes, he was.

He thought I was going to die. Did you think I was going to die?

No, I never thought that for a second. I knew when CHOP’s team came to pick you up that they were going to make you better. I had no idea how, but I knew they would.

But dad said he thought I might.

Well, he may have heard some things the doctors were concerned about, that I didn’t hear. I was in shock – I don’t think I heard much of anything. All I thought about was you and holding you and how we were going to get through this.

The concern was the DKA. You know that’s very serious, and can cause coma or even death. The nurses came in every hour and checked your pupils in your eyes to be sure you were okay, and you were.

Did they do lots of tests on me?

I think so. You had IVs in both your arms and both your legs, and they did come in periodically to check on things and run tests. I don’t know what they were for anymore. You were getting insulin in one of the IV’s, so I know they were checking your blood sugars to see if they were coming down. The heart rate monitor was still attached to you, which is normal, and they checked your blood pressure too. (I didn’t mention the mind-numbing screaming she did for hours, the next day, when her fatigue began to wear off and the insulin was making her better.)

Was O there?

He was with us in the ER until Nannie took him home. She brought him down to CHOP the next day to see us. (I know she can hear my voice, somewhat weakened by the memories. I didn’t tell her that her then 6-year-old brother asked me if she was going to die.)

And dad took him home?

Yes, dad took him home and took care of him while you and I stayed in the hospital. I know that was really hard for him, that he couldn’t stay with you. It was very hard for me, to be separated from O for 5 days. I worried about him too, because he was so small and he didn’t understand what was happening.

So then I got a pump?

No, not then. We had to start with shots, which you hated. It was really hard, V. You  were so little and you hated it all, and there’s really no reasoning with a 2-year-old. When I’d prepare the shot you’d run away from us. You’d refuse to eat, and spend half of mealtimes crawling around on the floor under the table. I’d follow you with the spoon too, begging you to eat. (She doesn’t remember any of this.)

You finally got your pump a year later. That was hard too – a new change to get used to. But it was the best thing, because we had so much more freedom and you didn’t have to eat on a schedule as much and your numbers were so much better controlled.

(I didn’t tell her that I hated how she would be tethered to a machine for her insulin. There would always be a site, and tubing hanging off of her, attached to a small box she’d wear in a pouch around her waist. How I hated that I couldn’t hold my baby girl without that “thing” being there, between us.)

Why do I have to have diabetes? Why doesn’t O have it?

I don’t know. There are many theories on why more and more kids are being diagnosed, but none are absolute. Many believe our environment is a huge contributor to this, and I think they’re right. But it’s also about some people having some sort of predisposition toward developing it. Some people have it, and some don’t. And I don’t even think the “experts” can explain that one. I wish I knew. I’m glad O doesn’t have it. But I also wish like crazy that you didn’t.

You would take it from me and have it yourself.

In a heartbeat.

There’s never going to be a cure.

I believe there will be. You know all those things they’re working on to make life better for type ones? There are also a lot of researchers working hard on that cure too. I believe we’ll get there. After all, someone discovered insulin, right? That means someone will find the cure, too. No matter how long it takes.

3:38 a.m.

Bladder calling! My legs are trapped in a web of sheets and blankets, items deemed unnecessary for a sleeping Todd that get pushed to the bed’s center and somehow always end up twisted around me like a boa constrictor. To make matters worse, the cat is sleeping at my feet, further restricting movement. A handful of silent profanity later and I’m back in bed, trying to rearrange the bedding without waking Todd.

My feet are hot. I still have ¾ of the bedding on my side so I can’t get my legs out without considerable yanking and pulling the covers away from my body. Finally, I manage to get one leg cleanly out. Oliver decides to leave now, pulling the bedroom door open with his paw, and disappears down the hall. I rearrange my pillows, lay my head down and stare at the red numbers on my alarm clock. 3:52.

And now I’m awake. I take a deep breath and close my eyes, willing myself not to start thinking. Please don’t think. Nothing that can’t wait till morning.

4:03. I’m uncomfortable. The bad elbow is aching, so I roll over to my left side, except that this means my legs are back under the quicksand. Another deep breath. I can do this.

A few minutes later 16 pounds lands behind me on the bed. Oh good, Oliver is back. Except that he is now kneading the covers. Lie the fuck down! I want to hiss at him, but by this time I’m sure Todd must be awake and if we start talking to each other that’ll be it. Finally he is sufficiently satisfied with his work, and lies down right up against my legs, effectively immobilizing them. RIGHT back where I started. Dammit.

He weighs sixteen pounds. That’s more than the turkeys I bought for Thanksgiving. He weighs more than a Thanksgiving turkey. I really wonder if he should be on some sort of diet. The vet seemed unconcerned at his last appointment. He’s so sweet. He’s been exceptionally close to me of late. Probably because it’s cold out now. Selfish little bastard.

But I love him more than he’ll ever love me, and I don’t quite care. I’ll keep loving him, and cleaning his box, and thanklessly feeding him at the crack of dawn. And pray he lives forever. Because I just can’t say goodbye to another animal. Oh lord, why am I thinking about the cat’s mortality at 4 o’clock in the morning?

V and I saw a cat at Petco that looked just like him. Wouldn’t it be cool to have two identical cats? No. No, I will not adopt another cat.

I think maybe I should write something about Thanksgiving and our trip to Costco. Nah, maybe not. What’s new about an angry old lady pushing her monster-sized shopping cart against the flow of traffic, giving the death stare to everyone in her path? Nothing terribly interesting happened on Thanksgiving either, other than me accidentally dumping roughly a quarter cup of garlic powder on turkey #2. You know Todd actually asked me if I at least washed some of it off? No, I did NOT. What’s wrong with a little extra garlic?

I really, really need to go back to sleep. In two hours I’ll be up for work. We have no appointments scheduled, but that will change at 8:01. All the stockings for our Secret Santa are up in the break room. What the heck am I going to put in mine? Still being the new kid, I was hoping to at least get someone I knew a little bit better than I did six months ago. Well, that kinda worked out, in both a strange and daunting twist of fate. I’m both glad I got her, and a little intimidated too.

I have reports to work on today. I wonder how many things I can check off my list this morning?

I can’t believe Christmas is coming. What am I going to get for Opac this year? I’ve already got V’s handwritten list. She’s thinking ahead for once. I hardly spent any time with her on Thanksgiving. Ah well, she hardly seemed to notice since my mom was there. I love how the kids love my mom. It reminds me of  Nana, all the time I spent with her.

When are we going to get our tree? I’m not ready to put up a tree yet. Todd’s birthday is coming up. I’ve got to start planning that. Haven’t planned an open house. Probably not going to do it this year. People are always too busy. Not feeling it this year.

Damn, my elbow hurts. I’ve got to go see the chiropractor on Monday. He told me to take ibuprofen at bedtime and again in the morning, but I think I forgot last night. He also told me to ice it. I hope he doesn’t ask if I did.

Is this what aging really means? That everything hurts all the time? Bed is supposed to be a sanctuary, but at some point the body can’t take another minute of lying down. WTF is that? And my knee still hurts. Of course it does. I have mild degenerative joint disease in it. If this is what mild feels like, please just take me out behind the barn when I reach level 3. I don’t know how people with chronic pain do it.

Everyone I’ve seen in my doctor’s office just keeps prescribing me drugs. I don’t DO drugs. I don’t want to take pain pills to cover it up, I want it GONE. At least my chiro and I are on the same page. He’s a healer, not a cover-upper.

Maybe I should start doing yoga. I need to get that mat I bought 8 months ago out of the corner of my bedroom and blow the dust off of it. And speaking of dust, I need to clean the blades of the ceiling fan.

Why am I doing this at 4:30 in the morning? Why can’t I just go to sleep?

 

 

Where I’ve Been – October/November Edition

Today is a quiet Sunday. I’m alone in the house. The kids are away and Todd went off early to finish a deck, because working 60 hours a week teaching and serving on several committees isn’t enough to keep him busy. I woke at 6:40 this morning, because that’s what it means to be OLD. I know this because my 91-year-old grandmother goes to bed around 6 every night and wakes up at like 4 a.m.

Now my soul is leaping out of bed like a deer, dragging my body out like an F250 dragging roadkill behind it. I can’t stay awake at night anymore, and I’d like to say that it’s okay but recent sarcastic comments from my husband are spoiling my delusions.

Anyway. I got up at 6:40 this morning because my bladder. Another happy development to the process of aging gracefully. But as I am forever the optimist and always counting my blessings, I won’t complain since it could be worse – like the inability to control the timing of the large intestine, which I vigorously pray isn’t hereditary.

So I woke up early on the ONLY day I actually get to sleep in with the worst kind of headache – the kind that hurts far worse when lying down. A half-pot of coffee, two loads of laundry, and another useless attempt to remove adhesive from my kitchen floor later, and I’m trying to convince myself that it’s Sunday and I can skip the housework and treadmill and go back to sleep. It’s hard to maintain the underachiever of the household title. I don’t know why my motivation to get stuff done is higher on weekends, but this is bullshit.

Underachieving aside, since my last Where I’ve Been post Opac’s football season came to an end with a breathtaking 1-9 record. I ran Veruca to softball practice two nights a week and attended all but two games. I have no idea what their record was. V is a born athlete and improved her game and gained unexpected status as a great catcher. She takes the game seriously, got frustrated with the girls who didn’t, and now wants to do travel team next Spring. On that note, her Little League team won the first place title last Spring and she now has a plaque in her name.

Todd and I attended the 16th birthday party of our neighbor’s son – a motorhead of sorts who also loves Mustangs as much as we do. He has a “car show” with a plethora of old cars including his own vintage Mustang and Todd and I drove our collection up there for the occasion. And then there was The Cruise. Everyone jumped in a car and we cruised around our area, ending at an ice cream shop before returning to the party. Three of the girls jumped in the convertible with me and the girl riding shotgun tuned the radio to all sorts of 80s (!!!) music and the three of them were loudly singing along. Fully enjoyed my middle-aged self, even if it was somewhat tempered by my anxiety over the alarming level of the gas tank.

I had multiple fun trips to the dentist last month, which I mentioned before. I had my mammogram, which was also fun because how many body parts can you actually watch flatten down to an inch without passing out?

I’ve been happily working extra days and realized how much I want to not be home on weekdays anymore. A year ago it was a daunting thought – how to go back to work full-time and manage our lives. I’m so glad I got the opportunity to get the part-time job and then put in so many extra days. We made it work. And I’m ready for more.

In true V fashion, Veruca decided she wanted to go to her bff’s neighborhood on Halloween night. Another big Letting Go moment for me. So I dropped her off with her meter and a handful of hard candies, although who was I kidding? I knew she’d be snacking from her newly acquired loot. Her cell phone was fully dead, so she had no phone with which to reach me or I her – another moment of OMG-I’m-going-to-hurt-you. But – I let her go anyway and entrusted her to the higher power.

Meanwhile, back at home, I turned on the porch light and waited. And forgot Sabra, who barked like a ferocious beast safely from two rooms away when the first doorbell rang. I handed out candy to the little girls who were intuitively not afraid of my doggie, and then parked Sabra’s pansy-ass in the bedroom with the door closed. Waiting for trick-or-treaters in my neighborhood is like waiting for water to boil, so I decided after the 3 masked boys (who were no strangers, btw) left that I would just leave the basket on the porch and go sit on the couch. Soon after I heard a ruckus and they were back and, as I watched from the window, rummaged through the candy and took more – but left behind candy from other houses. I had to laugh. At least they left something behind. And admitted to it, on the bus the next morning, to V because they’re all friends.

Opac turned 17 at the end of October. He and I planned to go to New York for the day, but the weather wasn’t very accommodating so we bagged it and went to Five Guys Burgers and Fries. Since football season ended he’s been eager to get behind the wheel, he says because he wants senior option next year but I think it also has to do with someone something else.

So Wednesday I sat in the passenger seat while he drove us into town. It was okay. I was okay. Until he approached the left turn back into our development at the breakneck speed of 35 without braking. Apparently Todd heard about it, because I was instructed not to grab onto the door handle “like that” “when your son is driving” because I’ll make him nervous. Fine. Next time I’ll just freak out after he mows down the neighbor’s tree.

Happily, Neph made an appearance on the Sunday after O’s birthday, to bring presents in a bag that he’d accidentally spilled Chinese food in (only Neph, I swear), and then overtook the kitchen like the good old days, fixing himself a pannini from the leftover cold cuts and lox. Got leftovers? Have Neph.

Other things:

Painted the guest room and subsequently developed a sore arm, and soon noticed a large swelling on my elbow. Had an x-ray and guess what? Nothings’ wrong – just minor osteoarthritis. Fuck middle age.

I went back to the chiropractor for an adjustment, thinking my neck is feeling great but something is causing these daily headaches, and now he’s focused on relieving the pain in my elbow.

We had a our annual JDRF fundraiser at the restaurant and I gave my one annual public speech, which this year (I think) went far better than last year’s alcohol-laced debacle, which I thoroughly owned and apologized for this year.

Todd, who loves me more than I sometimes deserve, went over to the place to check out the giant metal chicken I was so excited about, ‘cause he fully intended to bring that bitch home and surprise me when I got home from work. $225. Guess what? She’s not living here.

We had a long overdue date night at Iron Hill Brewery, which was lovely and was also my first drink in nearly 3 months. I was serious about giving up drinking, and I seriously lost 11 pounds to date. Yesterday morning I was down 13 pounds, but that could be blamed on the previous day’s unintentional diet of only fruits and vegetables, which I’m sure was subsequently undone last night at my cousin’s wedding where I decided one glass of the house wine (which turned into more – the tally still under dispute with Todd) wouldn’t hurt, and no doubt caused the monster headache this morning.

But who doesn’t love a wedding? I had a great time. I used Rent the Runway again, another Marchesa Notte, which was lovely but difficult to dance in during “Shout!” The sleeves don’t allow much give in the upward direction so now I have the cocktail dress equivalent of rug burn on my shoulders. I danced the night away with family and friends, including one new friend who proclaimed himself the choreographer of our little circle and soon we were leading the congo line and generally making a fantastic spectacle of ourselves while the millennials sat at their tables looking on like spectators at the zoo. Though I only expected to dance the slow dances with Todd, we had a fantastic time dancing to other songs like a pair of handicapped ballroom dancers.

Thanksgiving is a mere four days away and I forgot to get the turkey out of the freezer until this morning. If you’ve ever bought a frozen turkey, you know that thing is still gonna be frozen on Thursday morning if it hasn’t been in the fridge for at least a week. If there was ever a power outage in July, we could keep the insulin cold for two weeks in a cooler with one frozen turkey.

More to come.

Type 1: Know the Signs!!

It’s National Diabetes Awareness Month…

The Tara Chronicles

Lately it seems Type 1 diabetes has been in the news, the worst kind of news:  the reports are of new cases only diagnosed after a child has died.  It seems implausible to me that this could happen, and I really don’t like to focus on the negative of anything, but the fact is… it has happened.  How could it get that far?  And more frightening of all… how could a physician, any physician, miss the signs?  Or, at the very least, consider all of the possibilities?  That just one finger stick and a tiny spot of blood could rule out this chronic and debilitating disease?

And this is why we “D-parents,” as we often call ourselves, are so eager to educate and get the word out.  We don’t want to hear any more tragic stories of diagnoses that, had they come soon enough, would not have ended this way. …

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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.

 

 

The Pump, a Tooth, and the Carpocolypse

The tale of an endless string of bullshit that might not only seem implausible, but has all the potential motivation for getting rat-arsed and banged up on sauce.

It all started with Veruca’s insulin pump, which was no longer under warranty. I called Animas, the company who produces her pump, to get a head start on acquiring a new one and … just how much of this $6,000 device was coming out of our pockets?

The sales guy asked if anything was wrong with the current pump (no warranty notwithstanding) – because insurance companies typically don’t want to fix what aint broke. Turns out I didn’t have to dig deep. While I was on the phone with him, I asked V if I could see her pump. She hands it to me and there’s a nasty crack around the cartridge compartment – a potentially dangerous situation and don’t use this pump because it’s dangerous. This isn’t our first rodeo. Somebody has a habit of over-tightening the cap on the compartment and this has happened before. Oh, and for the record, it isn’t ME.

So we start the process. Our insurance company covered the full cost. Woohoo! I was so happy. Until five days later when Animas announced they were going out of business and all pump holders would be transitioning to another pump company. I was so angry. And stressed. There was more drama over it, but I’m over it. For now.

Meanwhile, back in the garage….

The 2012 Mustang. One Friday evening, Todd went to start it and … nothing. Dead battery. Pressed for time, he took my car. A few days later, my 7-month-new car decided to take a seizure on my way to work. Todd took it to the dealership in town, who essentially accused him of not maintaining the car, told him there was only a quart of oil left in it and contained metal shavings, and the engine was blowing smoke.

They’d need to tear down the engine to determine the cause, and until they tore the engine down they couldn’t determine whether it would be covered under warranty or not. Todd called bullshit and told them he was taking the car home. The receipt stated that customer failed to produce receipts (of maintenance) and was “taking vehicle with known internal engine issue.” Way to piss off my husband, guys. (He rarely calls me at work, but this day he called me on a rant that literally had all my anxiety nodes tingling with electricity.)

He called the original dealership that sold us the car to arrange for a tow. Ford will tow your vehicle to their dealership at no cost. Or, at least at no cost up to 35 miles. We live exactly 38 miles from the dealer who sold us the car. So it was going to cost I-don’t-know-how-much to tow it the extra 3 miles, and so THEN he called AAA who would tow it but wouldn’t tow it until the dealership opened because someone has to “receive it.”  (This is a new one. And even the dealership was perplexed.)

The happy ending to this story: the dealer found no metal shavings, and – shockingly – no smoke blowing from the engine. Turned out a cylinder-6 spark plug needed to be replaced – a known problem among this particular model. And, OMG, they didn’t have to tear down the engine. Oh yeah – and it didn’t cost a thing.

Meanwhile, back in the driveway, the Ford Fiesta, which was residing with another family member for the past 3 years, came back to us. The timing was good, since I needed to switch cars that fateful morning. But this car is like a petulant child you have to coax into doing shit. You have to turn the key in the ignition just so far, and hold your foot on the brake for 30 seconds. Then, after those 30 seconds, turn the key all the way and it will start. Yeah, that’s right. Ridiculous. This is so not a good feature for someone with anxiety who is also perpetually late. Or if you’re being chased by zombies.

During all this drama, the 2012 got a new battery. Then I decided to take the 2001 convertible out last Saturday afternoon and, since I was running late, I tried starting it and IT wouldn’t start. Todd was in the garage with me and said, wait a minute! I can fix this. He jumped the car, and told me it’ll be fine now, it too has a brand new battery. Um, … okay…… BUT, there was no gas in it. SO – he dumped a gallon and half into the tank while I’m sitting in the car. Because motorheads always have gas and tools. Enough to get me to Veruca’s softball game.

It was a beautiful day, a beautiful ride. When the game was over, I went to turn the key in the ignition and …. Nothing. Son of a bitch. I flagged down my ex, his wife, and my kid as they were leaving, while I called Todd who insisted that it must be a loose connection, because it’s a brand new battery, after all. So, the ex got to be the hero and held the connector to the battery and the engine started right up. It was just cracked and needed to be replaced. But still – I still needed gas and I sure as hell wasn’t stopping because I’d need to shut off the car again. Ugh. I hate cars sometimes.

And here’s why. I inherited a 1977 Audi Fox when I turned 16. Nice car right? Wrong. It was all kinds of wrong. My best friend dubbed it the boogeymobile, after the shade of green it was. It was a standard transmission, and I was driving it long before I was truly skilled in the fine [smooth] art of stick shift. And then it started breaking down – at intersections, back in the days before cell phones when you had to rely on the kindness of strangers and the nearest pay phone. This car is the reason I have anxiety every time I drive an “older” car.

So all the car situations got all straightened out. (Except for our Fiesta’s special needs.) Todd replaced the thingy that connects the battery to the whatever-that-starts-the-car. And then my front tooth cracked off. (Not at the exact same moment.)

Well, it’s not exactly my tooth. So, my secret is out. I’ve had composite on the top 6 front teeth since I was 14. I’m of the generation when fluoride stained adult teeth with white spots. My previous dentist repaired this front tooth about 2 years ago and he literally drilled off a huge part of my natural tooth, which not only makes me furious, but he did a shitty-ass job and there continued to be a thin line on the surface that he couldn’t seem to smooth over.

So last week the composite just cracked off, coincidentally right where that thin line was, revealing the ugly truth I’ve been worried about since he did that. I’ve since changed dentists, who fixed it temporarily so I could be seen in public – which lasted a whole hour and I had to go back the next morning for the real fix.

Epilogue

The ’01 and the ’12 are running beautifully. My car is running like a new car again. The Fiesta still needs 30 seconds to get pumped for trip to the supermarket. Veruca has a brand new Animas insulin pump with a warranty which will protect her until Metronic replaces it free of charge during the transition in the next two years. I have a beautiful front tooth again but know that forty years from now I’ll be sitting in a nursing home with a half a tooth. Maybe that’s what they mean about being good to your kids now… so they’ll pay for your teeth later?

 

 

Four Years in Maryland

It’s officially four years since I reluctantly excitedly nervously optimistically went kicking and screaming moved to Maryland. Four years!

Opac is now a high school Junior, and learning to drive. Veruca is in her second year of middle school. Todd has gotten a promotion and is simultaneously launching another business. I got a new job. We lost Pi, and we loved – and lost – our adopted kitten, Shadow, in one short month. The ex got remarried. I like her more than I like him. Is that wrong? We’re all getting along. We got a new car. Or two. And the coveted beater truck for all that hauling Todd plans to do. (He chastised me for calling this “nice truck” a beater, but I call it like I see it.)

Four years later… home renovations continue. We gutted the apartment and a friend subsequently moved in and broke the smoking ban. We painted. We repainted. We bought new rugs which the dog has managed to shit on already. We renovated the rec room, got a pool table. Still need to build a bar. We got the fireplace working. We acquired a hot tub friends were giving away.

We built a home gym, acquired a used treadmill – because Facebook marketplace rocks – for $75. We cleaned up our stationary bike, which spent several winters outside while we were away living in PA. We added a weight bench for Opac last Christmas.

We had parties and poker nights. We took short trips to several places I’d never been. We finally took a real vacation together. We both gained weight. We tuned up our bikes and started riding. We’re both losing weight.

We attended some galas and felt rich for a night. We attended a couple of weddings and embraced the love we felt. We attended more than a handful of funerals and remembered how fleeting life can be, and how blessed we are.

We celebrated 50 years of enduring love with my in-laws’ anniversary party in our backyard with seventy guests.

We made new friends, and watched others fade away.

We continue to slowly claw our way back from a mountain of debt that has plagued us since the beginning. All that money I sent my lawyer every month is still a mystery to me. I’d like to know where it came from and where it’s going now.

Six years ago, Todd wanted us to move here. Six years ago, I told him there was no fucking way. Well, I said it nicer than that, and left out the f-word. Six years ago I spent many overnights in this house, escaping – but not really – the debilitating pain of divorce and child custody, rediscovering faith, myself, and the supernatural power of first love. There is some existential healing power in this house I cannot explain, but everyone who needs it, feels it when they enter.

Four years ago I felt like a stranger in a strange land, and desperately wanted to not regret coming here. But my children made friends quickly, and Opac’s declaration that this place was so much better than where he’d come from made it all worth it. I didn’t see the limbo they lived in, in our former place, until we moved here and everything clicked together like the missing pieces of a puzzle.

I trusted Todd that this was going to be good, because I couldn’t trust myself. Today, I can’t imagine being anywhere else. This is home. More home than anywhere I’ve ever wanted to be.