This Christmas Eve

On this Christmas Eve, I reflect on where I have been and where I am today. I’m also thinking of friends and family who are troubled today, either by choice or circumstance, and may feel they’ve fallen off (or have been pushed off) the path they believe they belong on.

You see, 5 years ago I was living in an old Victorian house, in a small town where I knew many people who didn’t really know me. I moved to this small town with my then-husband and small son, and transferred my membership of the Mom’s Club in another town to that one. I remember the day I called the president of the local chapter in my new town – and we spent over an hour on the phone. Her voice was familiar to me – she sounded like a combination of my two friends Kathy and Michelle. I knew immediately that I’d found my new “home.”

I’d soon find a good handful of friends there, who became my cheerleaders as my life shifted and I made some very scary changes. It was then that I realized who was real, and just how not alone I was.

The week before Christmas, December of 2010, I went with my then-family to a local park for a live Celtic music performance featuring a long-time friend of the restaurant. I sat there, next to my children, and listened to the most beautiful music I had ever heard. It was like listening to the music of my soul. I thought of my Nana. I spoke to her inside my head and told her how I missed her, and how I wished she was here to guide me forward in the midst of the enormous changes I was facing. As the music swelled, so did the tears in my eyes.

That night, all I could think of was being happy again, no more fighting, no more anxiety, no more worries. I thought of the friends I had reconnected with on Facebook, who seemed like their lives had come full circle and they were “living the dream” I’d always dreamed of. I thought of all I wanted for myself, and my children, and how no matter how hard I fought, or how badly I wanted it, it wasn’t going to happen where I was.

I wanted to share that night with Todd. It’s already known that I always loved him. He is a part of me that I could never forget. We were already friends again, but nothing more. But I knew at that time and place that a year from that day I would be sitting beside him. The details are irrelevant now. But what matters to me today, is that I had an epiphany that I couldn’t ignore.
Sometimes what we think we want, what we think we need, are not part of the path.  Sometimes it’s the other person in our lives who doesn’t see it that way. I guess what I’m trying to say is, don’t close doors that haven’t yet opened. Don’t lose faith that you are not on the right path. Don’t lose faith, period. I was in a place of despair for so very long, that it took me away from myself, and I almost lost faith that happiness and peace was within my reach. If that is you tonight, know that we all have a destiny – a lesson to learn – a path to follow. Sometimes it takes a moment or ten of silence to recognize it.

Even if it takes longer, you have to believe that your time will come. That couple I met in Ava’s preschool, they made me want it – more than I’ve ever wanted anything.  I didn’t believe it, until I stood face-to-face with the man I would die for today. Fulfillment doesn’t have to be true love, it can be anything you want it to be. You just have to believe. Believe you are worthy, believe that there’s a plan for you, believe that it’s coming – no matter what.

Christmas Eve 5 years ago, I was up late wrapping Christmas gifts by myself, watching Love Actually and drinking wine. All I could think of was how badly I wanted better for myself, and for my children. Turned out it was the last Christmas Eve I would spend longing for what the life I wanted and deserved. 

My wish for everyone this Holiday season is that you find happiness and joy and peace within. You are all worthy. You are special. And you deserve all of the above and so much more. Be patient. Be watchful. Be-lieve.

Peace and love,


Life Under the Big Top – The Circus Continues

It’s actually several days later, and I am again doing laundry before my offspring leave for 2 days with their dad. What I found in today’s laundry: a boy’s belt, a door hanger with the word “Princess” on it, and a shirt on a hanger. This is my daughter – who tries on clothes like a teenager – and then tosses them on the floor. These then make their way to her hamper and I end up washing clothes that weren’t even worn.

I’ve begun training the kids to deliver their hampers to the laundry room, with the ultimate intent of sorting their shit themselves and thus making mom’s job easier. We’re working on that. This reminds me of that old phrase I often employed when Todd and I would discuss the status of my life while I resided in the “marital” home – I’m working on it. Thank God he never seemed truly annoyed by it, though I purposely stopped using it because it would always give pause to every conversation we had where I used it.

Before we stray too far away from laundry, let me warn all you parents of soon-to-be-teenagers to no-not ever put your head inside your teenaged son’s laundry bag. You’re welcome.  Anyway, Neph uses his laundry bag for both clean and dirty laundry – which, of course, we all did in college so no judgement there – but we are still working on his instincts to throw dirty clothes directly onto the laundry room floor or – even worse – into the washing machine to ferment until either he remembers they’re in there or I get pissed off and remove them. I bought him the laundry hamper to encourage proper use of it. And still.

I have no new pet transgressions to report. All three are keeping their food down, their paws to themselves, and eating with a certain level of manners.
Today I am wondering how we will fix the nails that have been pushed through the sheetrock in our bathroom after the roofers shook the house down. I’m also wondering how to talk Todd into wall-to-wall carpeting in the rec room. And why people must poop in public restrooms and ruin it for the rest of us. And how camaraderie can be established between two strangers peeing in adjacent stalls. And so the circus continues…

Even When You Think You’re Doing Everything Right

Saturday night we catered two private parties , and I hit the jackpot by catering the one that I’d done before and was in my old high school stomping grounds. It was only 20 people and so mom sent me with two other servers to run this party for 20. I worked both sides (translation: food prep and serving)… setting up the buffet with the food and butlering hors d’oevres . As I was unloading cambros and filling the chaffers, I pulled out the pork tenderloin that was to be drizzled with a whole-grain mustard sauce. 

I asked Terri (one of the other servers) – where’s the mustard sauce? She grabbed a container filled with a yellowish substance , which I drizzled over the tenderloin like a professional chef (while noting how yellow it seemed). I dropped the pan into a chaffer on the kitchen table and went back to the kitchen for the next item to put out. I opened the cambro (a large box that maintains hot/cold food for catering) and pulled out the next item – truffled Brussels sprouts – and noticed the container behind it.

As I pulled this out, Terri was saying, where’s the fourth salad dressing? Where’s the fourth salad dressing? Terri was in charge of setting up the salad station, while simultaneously pouring drinks for the guests. The container in the hot cambro reads – “mustard sauce.” Oh. my. God. Because I just poured SALAD DRESSING  all over a main course offering. Oh my God. Oh my God. I ruined my mom’s food. I ruined it.

Terri’s like, “it’s okay, we can fix it,” and rips off several paper towels to dab up the lime-cilantro dressing that was supposed to be whole-grain mustard sauce. The funniest part of the whole party? Everyone RAVED about this pork that “was amazing.” And every time  someone commented about the fabulous pork, Denise and Terri would giggle like a couple of lunatics.

But the shenanigans didn’t end there. The pine greens and ribbons packed in a crate with silver candlesticks were for me to decorate the table around the chaffers. I did a fine job of it… except that I couldn’t find any tapers for the candlesticks. Turns out the 3 fancy red glass votives were supposed to be placed atop said candlesticks. Well, nobody told me that –so I just stuck the empty candlesticks in a corner in the kitchen…. and remembered them about a mile away from the restaurant on our way back. 

I also cut the apple cake in slices instead of blocks (which would have been easier for picking up as finger food) and realized I’d cut only 16 slices, instead of 20. Shit! All told – the party was a huge success, the host was thrilled as usual and tipped a very generous tip, and my mom didn’t fire me for kicking her pork tenderloin up a notch. As IF.

A lot Can Happen in 20 Minutes in Justice…

Sunday was shopping day for Todd and me… Justice, bedazzled in pinks and blues and purples and with racks of clothing so close together only a 4-year-old could squeeze between, made Todd dizzy and claustrophobic, which only added to his hangriness. So he stepped outside and subsequently into the lair of the beautiful young woman selling nail buffers. 

I sifted through the racks, occasionally glancing out the window to see Todd smiling and chatting amicably with her. Hearing her accent, he asked her where she was from – and she said Israel – and further conversation revealed to her that we celebrate Hanukah and Christmas… to which she said, you know about Hanukah? Yes, he said, I’m Jewish. She buffed out his nail with this device that did no better a job than my 99-cent buffer from Walmart, while simultaneously asking him if he had a girlfriend (he told her he was married) and then asking him how many wives he had, and then how many girlfriends.

We went to eat immediately afterwards, where Todd complained about his one shiny nail and I got carded for ordering a Stoli and cran. Either she was buttering up the wife for a good tip, or my new red hair just radiates youth. I’ll go with the latter.

Return to the Battle of Normandy…

Meanwhile, Mother Nature decided to take her pranks a little further than a 70-degree Christmas Day in the Northeast, and delivered a final insult to injury in the form of Aunt Flo. Aunt Flo apparently likes holidays, because this would be the third holiday in a row she arrived right on time. WHO has time for THAT?! 

*Disclaimer: I was not paid to either endorse or burn this feminine product.

**Disclaimer: No vaginas were harmed for this post.

***FYI: Tampons do NOT burn very well. I guess this is a good thing.

My Circus, My Monkeys

I just went into my kids’ bathroom, because I’d like to curl my hair and right now there are roofers on my roof and there’s a skylight in my bathroom. So I go in and I’m like, what the fuck is that smell? (Sorry for the foul language but there is really only one word that adequately sums up my initial reaction to entering my kids’ bathroom.)

I gingerly lifted the lid of the toilet and there it was. I will spare you the gory details, but let’s just say I now know why the bathroom smells like the water treatment plant. And not. one. kid. tells me about it. If I had to guess, it was my firstborn…who didn’t appear to be in any particular hurry this morning but now I know why he opted to put his contacts in in the kitchen.

The dogs are done losing their minds over the sound of 12 people making our house quake from the top down, which is good cause now I can concentrate on writing. But I really just needed a good twenty minutes of fresh air before finishing my hair. Anyway…

Everything was going swimmingly yesterday as we all managed to wake up on time – even Neph, who didn’t have to get up and go anywhere –decided to get up at 6:30 a.m. anyway to create a traffic jam in what is quite a large kitchen with one of his many food inventions interpretations in the middle of my breakfast and lunch preparations. Apparently he has not yet grasped the stay-out-of-a-woman’s-way-in-her-kitchen concept.

So the two boys were buzzing around the kitchen doing what teenage boys do, and soon it was time to drive Owen to the bus stop because he’s “injured” and just can’t walk that far. Seriously, this kid has used that broken collarbone for everything from avoiding trash duty to carrying his dirty dishes out of his bedroom (and yes – I have already asked him how they got there in the first place).

Anyway, Neph was singing the Twelve Days of Christmas (oh yes, he was) and when he got to Seven swans a-swimming Owen followed it with …Eight geese a-laying.  Oh – the painful irony! My kid not only doesn’t know how to count, he doesn’t know all the words to this song, but Neph – who doesn’t even celebrate Christmas and pshawedRudolph – does.

Anyway, I got 4 loads of laundry done and colored my hair a new shade (though anyone in the house has yet to notice – which is alarming, since the color is medium red violet – oh, only four shades darker than the original color). Ava was asking me a ton of questions (before school this morning) about The Boy in the Striped Pajamas, which she watched the night before, so I decided I’d better watch it in its entirety. I knew it was going to be difficult to watch. But I didn’t expect to have to share those last horrifying, slobbery-tear moments of the film with Neph. I kind of prefer to watch tear-jerkers by myself, you know, so I can relax into the despair rather than have an aneurysm trying to hold it all in, cause I’m private like that. Turd. Neph sat his ass down right on time.

When Owen got home he tore the bottom tray of his braces in half – the second set this has happened with and with 2 days left until he changes trays. An hour later Ava was home and decided to make dog cookies, so she Googled a recipe and whipped up the whole thing herself, and then abandoned the batter for me to shape and bake. Once these were done, I sealed them in Tupperware and went about my laundry again.  I saw it coming… I heard Neph make his way upstairs while I was hanging clothes in the closet, and soon after Ava came running down the hallway hysterical because he just ate a dog cookie.

Now 3 kids were standing in our narrow hallway all shouting at me about dog cookies – are they really dog cookies?! Because Ava is a prankster and it would not be beyond her to either lie about it or convince him to eat one. Owen suggested that perhaps Neph should think twice before eating things. Neph said they weren’t bad. I thanked him for that, and reminded him that they were for the dogs.

The dogs were pacing around the house for what seemed like an hour, fraying my nerves. Seriously, I’d have thought poor Sabra would be exhausted, since she hadn’t slept all day and spend most of it trembling against my legs while the roofers broke the sound barrier inside our house. 

Well, I think Pi really is losing her mind but my God – she’s 83 years old! She has these moments when she just walks around the house like she’s looking for something that she never finds. Her new thing now – besides belching up a mouthful of water and bits of food – is walking through the water bowl. She did this twice yesterday and it took a bath towel to mop up the tsunami. The day before, she stepped into the food bowl and upended it – food went everywhere. This time it was Todd’s turn to get pissed off, which left me sniggling and speechless.

Anyway, while the dogs were pacing around, Ava and Owen decided to start a pillow fight in the living room – where, by the way, the Christmas tree stands with all the priceless Taylor-Backes ornaments, the ceramic Christmas village lighted houses around it, the countless pictures both hanging and placed around the room…not to mention 3 lamps. I ordered them to stop it and like all good children, they kept going. Ava launched a large pillow at Owen and knocked over a picture frame and I lost it.

After the chaos and a short time out later… Ava and I were watching Elf past her bedtime because after several hours in the 300s and a complete set change, her sugar was low and we had to keep correcting it every 15 minutes. Todd called me on his way home at this point and neither one of us could finish a sentence between instructions to Ava, and Neph and Owen loudly talking shop about video games.

Meanwhile, Pi walked too close to the top of the stairs and fell down two of them. I ran to rescue her and then as I was coming back up – the cat was leaning precariously over the top step and then yaaaaaaak. An entire bowlful of cat food at my feet.

This is my life. 

But wait – there’s more.

How to Clear a Room in 5 Minutes


Start a heated discussion with a family member in a room full of people who aren’t family.

Those close to us know that my mom and I are very close. I’m sure my stepdad still shudders at the memory of those screaming matches heated discussions we had in my teen years. It was ugly. But – I understand that these are a right of passage for teenage girls and their mothers. (I can’twait to be on the receiving end in the next few years.) I won’t bore you with messy details of the past, but suffice it to say there were more than a few moments my mom pulled out the suitcases and offered to pack for me. To be fair, I often used the old, tired threat of  – I’m going to go live with my dad!

So, I was in the restaurant kitchen a couple of nights ago. A close friend of the family was hanging out with us as I made chocolate mousse, and Andy (the chef) and my mom were prepping for dinner service. I happened to mention something to my mom about some plans Todd and I had made, and apparently the timing was bad or something and mom got all snotty about it.

Meanwhile, a server had entered the kitchen to gather things for the dining room, and family friend was standing by. Ordinarily one to avoid conflict, even with my mom in my middle age, I turned around and started spewing my complaints about not being able to please everyone, and how (essentially) I was being pulled in many different directions by everyone who had their own needs as well. I may have raised my voice. A little. Okay, maybe a lot.

When I was done, mom spoke calmly to me – kind of like one might do to a bear that suddenly appeared on your patio – and suddenly I noticed family friend rapidly retreating through the kitchen door. And then I looked around and noticed no one elsebut my mom, her blue eyes meeting mine with that look of pity/kindness one gives to a mental patient. The restaurant kitchen, normally quite loud during operations, was dead quiet…and no sign of Andy either. Just a pot of something savory quietly simmering on the stove.

Feeling suddenly like a complete jerk, I went about silently cleaning up my work area and people started slowly filtering back into the kitchen. Mom offered to cook me something for dinner – to which I said, no – I’m not hungry (total lie) and, you don’t need to be cooking for me. Still looking at me like I might snap again, she said – But I love cooking for you. It’s what I love to do. Still feeling obstinate I said, you’re not going to poison it, are you? What??! Where the hell did THAT come from? How did 16-year-old Tara get in here??

Andy, who had returned to his post behind the line (restaurant talk for where the food gets prepared), continued to work quietly as if he were deaf and mute. Family friend never came back – instead opting to start drinking out at the bar.

To make a short story shorter – all’s well that ends well. We all went back to our normal lives.

But – the holidays are here – and they’re filled with emotions and frustrations and old family feuds and love, all rolled into a tight little dysfunctional ball. If you find yourself surrounded by family and friends alike, and you want them all to go away fast – pick a fight with someone. Unless your family loves a good fight – then that might not be such a good idea – like two brothers who really don’t get along – I don’t recommend they throw a banana peel at each other (true story). The cops don’t really enjoy breaking up physical altercations between families. At least I don’t think they do. And mom won’t be particularly happy when her priceless antique lamp gets broken (hypothetically speaking, of course).

My method worked quite well, I think. Even if I had to regress some 30 years to accomplish an unplanned goal (and thus, more fodder for the blog mill).

Easy Like Tuesday Morning (and other tales of corruption)

Nothing like sitting down to a fresh screen, staring at a blinking cursor. They still call it a cursor, don’t they? I’ve been trying to sit down to write for days. My brain is forever multitasking and fresh ideas pop in there constantly, and I swear I’ll try to remember them before they get lost in the current … only to forget that brilliant and hilarious thing I just had share. I recently unearthed a little notepad that’s really pretty with my initial on it – that I decided would do nicely at taking down my random thoughts. Guess where it is now? (On the ironing board in my walk-in closet. Next to a pile of shirts I don’t want to iron.)

It’s 8 a.m. and I’ve been up for two hours and I can’t even tell you what I’ve been doing. Drinking coffee and …. and….. and….. staring at my kitchen table wondering how I managed to cover it with crap. Again. Ava is sitting at the island doing homework – doing homework – she was supposed to have done last night. To say she’s not a committed student wouldn’t be fair, would it? But, alas, she’s been warned not to do this before, and here we are again.

Later now… had to drive her to school because surprise!…she missed the bus. Again. What IS it with these kids? Her room looks like her dresser exploded and she still manages to dress like a homeless person with old t-shirts and leggings with holes in them…add to that her hair which she prefers to air dry and only brushes it after I remind her, and the look is complete. Why I spent all that money on new clothes this fall – ALL of which are still hanging in the closet with tags attached – I wonder. Always a hoarder, recently her under-bed vomited up every notebook she’s ever had since birth. I ordered her to clean that shit up before she killed me in the middle of the night. There you have it folks, diabetes kills another parent.*

If that doesn’t do it, my son’s hair will. His hair is as coarse as horsehair and, at 15, he has chosen to wear it spiked up like a wayward boybander. We bought this stuff that can only be described as glue, to sweep his hair up to resemble hanging upside down. But it’s  a tricky operation because too much glue and then the hair gets glumpy and not spikey and then we have to wash and start all over again. Yes, we’ve had mornings like this. And now his hair is getting “puffy” on the sides because he needs a haircut, and so there is much fussing about the placement of hairs and some days it looks exactly the same as yesterday “not right” and we have to “fix it.” And, if you’re confused right now, let me clarify that I am now a hair stylist.

I was actually excited to get our tree on Black Friday. I realize that this was a terrible transition in topics and that trees have nothing to do with hair, but I’m drinking decaf. I have never gotten a tree that early. Like ever. A beautiful, warm, and dry day – coupled with houseguests who came along to make it more fun – warranted a drive to the tree farm to cut down a 10-foot Frasier for our living room.

You know how there’s always that one aunt… well, I’m that aunt. I have taken on this role with more bravado than Kanye West brokering Grammys for Beyonce, and more pride than Nicki Minaj has for her backside. And now you’re wondering what trees have to do with aunts, or even what any of this has to do with obnoxious musical artists… and I’m gonna tell you.

I’m that aunt. I’ve always wanted to be one. I’ve idolized my own “that aunt” since the very first time she stuck olives on all of her fingers and called herself a tree frog (see! There it is! The connection between aunts and trees! And I didn’t even have to reach far for that gem) and have waited centuries to be just like her. So, I started – well, maybe not started (I’ve been an aunt now for almost 5 years) – with cultural corruption.

I took Nephtoo (Nephew2) to the tree farm and made him cut down a Christmas tree. Now, you might say that cutting down the tree is itself a crime, but I say nay nay. Because my cat loves the delicious water in the tree stand and he is completely enraptured by naps under the twinkling lights – I do this for him. Because I’m selfless like that. 

So anyway… I made my Jewish nephew go Christmas tree hunting. And THEN Todd handed him the saw and let him cut it down. I took a commemorative picture of Nephtoo’s “first Christmas tree.” We decorated later that night and he helped hang ornaments like a BOSS. (And I also do realize that “Nephtoo” sounds like some ancient mummy or an extremely wet sneeze, but I like it.)

Neph (Nephew1) missed out on all this glory because apparently he actually has friends who were home for the holiday. He seemed nonplussed, though he was bummed that he was missing out on my very extra super special Challah French toast the next morning because all he thinks about is food. (It’s killer. Come to brunch this Sunday and hollaaaa!!!! – you’re all invited.) In my that-aunt assaults on him, he has proven to be a tough nut to crack. Mostly because he is that oblivious. Seriously, I worry about him thinking too hard sometimes…. Imagine the wheels turning in there are in need of a little oil. Case in point: he will ask you a question that no one who was raised by humans couldn’t possibly know the answer to. As of this posting I can’t remember a specific example (which is weird since we seem to be showered with them almost daily), but I’m sure I will have one by tomorrow morning.

Anyway, I tried to corrupt get him to watch Rudolph the Red-Nosed Reindeer and he – get this – said he wasn’t interested. He’ll spend 8 hours a day playing Marvel superhero games but can’t be bothered to pay homage to the superhero of Christmas for one hour?? Plus he “had some stuff to do,” which is highly suspicious since the only thing I can see him really needing to do is Which he has not done. And I know this because I was down there in the rec room the other day and he’d left his door open, and there was a very ripe odor jaculating from it.
Jaculating is a real word, by the way. And it is not missing an “e” so stop right there, you filthy-minded perv. It was yesterday’s word of the day and I’ve been dying to use it in conversation ever since. Perhaps I can hurl that at a customer tonight in a way that is sure to render the sous chef dumbstruck. I live for those moments.

Finally, in keeping with the tradition of offering up more mundane and completely useless information with which to sue me, I want to tell you about the most amazing purchase I made last weekend at the Walmart (yes, I went there on a Saturday). It has a little glass bottle and you attach it to this other thing and then plug the whole thing into an outlet (preferably near Neph’s bedroom). It’s a plug in air freshener – the gift that keeps on giving!! The rec room now smells like clothes line-drying on a warm summer day… with a minor note of boy schtank. (Just kidding.) Seriously kids, this plug-in is the Bomb (no pun intended). It’s like a fresh air apocalypse. Absolutely nothing can compete with it. And with that, the cat just emerged from the tree to accept the challenge… 

*It’s a joke, GET OVER IT.

The Final Hours – Continued

I already wrote about the support group debacle that rivaled the Paris attacks in stealing World Diabetes Day out from under us, so no need to rehash. Still, it’s troubling that those of us who are supposed to be united in this disease can possibly become warring factions. How the attacks on personal integrity and the seeming jealousy of others’ advocacy efforts could result in personal attacks online and in social media.

It came to my attention that there’s Another Organization who singled out the Other Organization, publically naming her on his page and accusing her of blaming the support-group-that-shall-not-be-named.  The whole thing has become a he said-she said affair, and in my opinion the Other Organization has exhibited far more integrity by steering clear of the bullshit, not engaging with trolls, and focusing on what she was meant to do. (Yes, I went there.)

Anyway, now to focus on what I need to do. Today my daughter is home for day 3 of sick-day management (what we call it in diabetes world). She is, thankfully, way better today… didn’t need any trips to the hospital for IV fluids… and I am thanking God for watching over her with me. She still has those stupid little trolls (ketones, not support groupers…hah!) (<dammit! I went there again!) we’re dealing with and, as she is not the most cooperative kid on the planet, I’ve been harassing pushing her to drink more water all morning. It’s not going great, but the optimistic momma I am keeps telling her she’s making great progress!! (Note: the ketones are trace and BGs are in range and not low anymore.)


During Diabetes Awareness Month I wrapped the inside of our bay window in blue lights (blue is the color we use to represent) This alone is funny – since how much public can I reach on a cul de sac? Anyway, one of my neighbors thought it had something to do with Judaism – which is even funnier (at least I think so). Oh well – it looked cool anyway.

I wrote a really good letter (at least I thought so) to the mayor of our town – albeit a wee bit late – explaining who I was, why I was writing, and asking if there was even a remote chance they would light the street lamps blue for diabetes awareness month (they made them pink for breast cancer in October). I even threw in the part about the governor’s proclamation. And….. nothing. Not I’m not sure I can help you, not I’m sorry, but no…. not even an acknowledgment of my email. Not even a form response you sometimes get from politicians. I was mildly disappointed, to say the least. But, not to be deterred, I will try again next year – and I’ll start a couple of months early.

I hung a few awareness posters whenever I got a chance, and made blue ribbons for the restaurant staff to wear on World Diabetes Day –which I’m sure the customers probably assumed was for France, unless somebody actually mentioned diabetes. Oh well.

I was invited, as a parent of a T1 child in Maryland public schools, to attend a Stakeholder’s meeting to discuss school management of diabetes. I was really excited to go, anxious to hear what issues they were tackling, and eager to share my thoughts and concerns as I had heard them through the DOC. The meeting was jointly convened by the Maryland Department of Health and Mental Hygiene (DHMH), the Maryland State Department of Education (MSDE), and the Children’s National Health System.

The agenda was comprised of perspectives from the diabetes care provider, the State Board of Nursing, School Health Services, and the Parent/Family, to include management challenges, needs, and opportunities. After introductions, we broke out into workgroups made up of members from the various stakeholder groups represented that day, each to discuss a differenct focus area. Obviously I don’t need to tell you that there were a number of Very Important People in attendance that day.

The topics on task for the day included communications between Providers, Schools, and Parents regarding medication orders, the School Health Services Form for Diabetes Management, the implementation of 504 plans and IHPs, issues related to training of school nurses and other staff, the training and oversight of unlicensed persons, challenges regarding care on field trips and other school-sponsored trips, promotion and support for self-management and essentially what that looks like at each school level. Workgroups were also tasked to come up with ways to improve all of these issues, from each perspective.
Pretty exciting stuff, right? I know many of the challenges from the parent’s perspective, if not from my own experience, then from what I’ve learned in the DOC. There is a tremendous and almost breathtaking gap in diabetes management in schools from state to state. I left this meeting feeling very proud of the efforts officials in my state are making to streamline management in our school systems. I’m no dummy, though – I do know that it has as much to do with liability as it does a genuine care for the health and safety of these kids.
I met someone not long ago, who told me about a problem her child encountered with a substitute who had no idea she had diabetes. The child raised her hand multiple times to be excused to the nurse’s office because she felt low, and the substitute repeatedly told her to put her hand down until she was finished talking… actually threatening her with an MIR (our form of in-school detention) if she “interrupted” one more time. As it turned out, the child walked out of the room with the substitute yelling at her in the hall. This incident was never reported to mom, who heard about it only through her child. Imagine that, just for a moment. The culmination of this incident (which could have been potentially life-threatening had the child not stood up for herself) was a meeting with school personnel and eventually the school board (whose initial response, according to mom, was less than enthusiastically accommodating). This is a colossal problem. And – I assure you – it is a rampant problem nationwide.
So, I thought this stakeholder’s meeting was phenomenal – and I have very high hopes that other states will follow suit and close that gap in school diabetes management. I don’t know how that will happen, but had hoped that by sharing all the information I learned with that support group, that those parents in other states would be able to step up and demand similar meetings. Because I really do care.
So, I’m dedicating a single post to the Stakeholders Meeting – through my eyes – to be shared publically by anyone who wants to. Hopefully tomorrow.  Stay tuned.

The Final Hours

The final hours of Diabetes Awareness Month… I wanted to reflect on the past month, but was busy keeping vigil over my sleeping daughter last night. Yesterday started like any other Monday – wake up before dawn, shower and put on a clean pair of my favorite jeans (remember this, it’s important), get two kids up and off to school.

My daughter has been complaining of bowel troubles since Thanksgiving, spent most of Sunday resting, no other obvious symptoms of illness, except for some trace ketones. Yesterday I kept her home to manage the ketones and sat with her on the couch all day. She ate a little. My son came home and I asked him to sit with her because I had to pick up some things at the store…but then she started complaining her stomach hurt and she didn’t feel well so… I sat back down with her. Moments later, she was bent over the side of the couch puking like an alien all over the rug. There was so much stuff coming out of her and it just didn’t stop.

My son grabbed his geometry notebook off the coffee table and Mr. Tough Guy made a run for it while I stood there, hunched over her and momentarily paralyzed. This icky sticky goo, which smelled remotely like baby-breastmilk poo and somewhat resembled it, had splattered onto my clean jeans, my vans, and the leg of the coffee table. I’ll leave you with that image for now as we return to the subject of diabetes.

A sick child is no picnic. But a child with diabetes who gets sick has it exponentially worse. First of all – the sickness. It fucks with (sorry for the profanity, but diabetes asks for it) the blood sugars, in most cases making them high (which makes the child feel bad all by itself)… but in other cases, dreadfully low. Now imagine the child is vomiting and can’t keep anything down… and we need to give that child juice or candy to raise the blood sugar up to a safe range. Now what? This has the potential to spiral very quickly out of control, and land us in the one place we never want to be – the hospital. Or worse.

Let’s move on to ketones. High blood sugars can cause ketones (that acid buildup in the blood that can lead to DKA) and so can illness. Now – what do we do to treat ketones? First – we need to give insulin (remember insulin lowers blood sugar?) because it helps knock down the ketones, in essence by giving sugar directions on where to go rather than stay lost in the blood to be turned into zombies – er, I mean, ketones. Second – push fluids. Children should drink ounces equal to their age, per hour. If the child is 7, she needs to drink 7 ounces of sugar-freefluids per hour. Fluids flood the blood and flush out ketones. How do they get out? Urination – which is why we often check ketones by testing urine. (Since our little trooper has always been extremely uncooperative, we use a blood ketone meter – it measures ketones with the same finger stick we would use to test blood sugar.)

Okay, so that sounds easy enough, right?  It should be, but like all facets of the diabetes monster – what works today may not work tomorrow. Now let’s go back to the vomiting child with the dangerously low blood sugars. He also has ketones. Obviously he needs fluids and insulin – but, he can’t keep anything down and insulin will only lower his blood sugars more. Ketones with low blood sugars are usually treated by eating something to raise sugar high enough to bolus insulin. But – how do you do that with vomiting? That’s a very good question… and one I don’t yet have the answer to, since I managed well enough without having to reach out to the endocrine fellow on call last night. I imagine the right answer is – the ER.

Last night I felt very real fear at the prospect of such an ordeal, and especially remembering stories I’d heard through the community about hospitals mismanaging diabetes andpreventing parents from managing it for their child. I rarely think it. I never say it. I HATE DIABETES! I hate it I hate it I hate it! I hate what it is, I hate what it can do, I hate what it has taken from our lives, I hate that my daughter hates it, and I hate that she cannot escape it, not for even a minute! I hate that it has taken children’s lives because it was sneaky and went undetected until it was too late.

I hate that we have to fund-raise, and constantly explain diabetes – what it is and what it is not, and that I have to pray someone somewhere finds the key to unlock the door to a cure before her life is over. I hate that healthcare providers don’t even know enough about it – and that parents have to be educated because theyare the ones who will have to ask for a finger stick test. I hate that this disease could kill my child. I hate that I’Mnot the one who has it instead.

Do you hear that? That is frustration, and the tears of tens of thousands of parents who would cut off their arm if it could cure their child. We are united in our desperation and our daily struggles, and why support is vital to our survival. Many T1 families complain of lack of understanding and compassion from their extended families… the inconsiderate comments and lack of interest in learning to care for the child. Many struggle to get adequate support and care for their child in school – from nursing mistakes to uninformed substitutes to inconceivable comments from ignorant parents about what caused your child’s diabetes (hint: it might have been you, you irresponsible mother, you).

And so – on that last night of Diabetes Awareness Month – I reflected on the fact that my child is sick, and that I’m crying in my car on my way back from the store because I’m scared she might get worse. I later reflected on how it all went down this month. How I started this month with hopes and dreams of grandeur (well, that’s a bit dramatic, but you will get the point)… that we’d use our posters and our resources to educate the public and ask our friends and family to share the symptoms of Type 1 diabetes. How I was so excited to receive a proclamation from the governor acknowledging this month as Diabetes Awareness Month, and encouraged by the quick response. Encouraged by the progress of several organizations to get the word out, and eager to potentially share my daughter’s diagnosis story with local news stations.

But no one could’ve have predicted the dramatic turn of events two weeks ago, and how one incident (or two completely unrelated incidents) could derail the advocacy and awareness we were all supposed to be united in….