This was the Summer Dad Died, and it’s over.

Tomorrow school starts and no matter the official calendar, summer is over. It wasn’t the best summer for me, for my siblings, my mom, my family. Not by a long shot. Not in the vicinity of any kind of long shot.

But summer happened, and I have four kids, and despite the awfulness that will forever mark this summer,  I hope I gave the kids loads of happy memories during this summer they’ll always remember as the summer Pop Died. Forever they will remember Pop Died and This is Where I Was and What I Did. And all of that will be part of their process, part of their childhood, part of what defines them, in even a small way. As is should be, I’m told.

They loved their Pop so much. Oh, my god. They did. They haven’t yet begun to realize how much they love him and how much they’ll miss him. And holy cow, how will I be able to help them figure that out?

After it happened, I wanted so much to give them a regular summer, to be a mom who finished her work and did fun things instead of sludging from a puddle of grief to do something other than let the kids watch yet another marathon session of Psych episodes.

I think I did. At the best I got the kids out of the house for a few hours of swimming every day. We played some games. We went places. We hugged a lot. We all did our own thing sometimes. There might have been some random dancing. I only cried from time to time. Alright, a bit more than that.

My own memories of summer with growing up my family  have inspired me every day this painful season — if nothing else, I have remembered to smile and be grateful. Because that’s what summer means to me. Almost all of the best memories of my life are in the summer, and almost all of those memories involve my family.

The pain of losing Daddy is still raw. He loved every season for what each offered, but wow, how he loved summer (OMG, he was Olaf before Olaf was Olaf! But, not really, I guess.)

And he loved family. And since June 24 I’ve just spent time looking around and saying, dang. Daddy. This has been one fantastic summer. Not hot, not humid, an odd patch of weather for lower New England in the summer. Warm, brilliant sunshine, cool nights, perfect winds.

Then I realized — August has been exactly the kind of weather we enjoyed all of those summers in Mt. Lakes.  Which is a whole different post, I suppose. But, there it is.

Daddy, I’d like to say right now, school starts tomorrow. Mitzi is starting 7th grade and Cooper is entering 6th, both at the brand-new middle school Ray’s worked so hard at making a reality all these years. Ellie is already in love with her 4th grade class, and Joanna can’t wait to show off her ten-inches-shorter-hair PLUS her new cartwheels.

Me? I’m going to spend a couple of very early hours getting five people where they need to be. Then I’m going to take a shower, do some client work, revise some PBs (you’d like this one, I think, with all the puns and wacky sense of humor), and yes, I might take a nap, read a book, go for a run too. Well, maybe not a run, but perhaps a walk or maybe I’ll dust off my yoga mat. Or jut ride my bike around the block.

I’ll call Mom to check in, as it’s been a few days.

Daddy, how I wish you were here. I’d like to think that you’re “here” in the swirling netherworld of passed-on-ed-ness, and that’s good. Beautiful, even. I’m glad you’re at peace — I believe you are, because out of anyone I ever knew, peace is something you have earned, finally, and I have to believe that if peace is to be found, you’re right there.

But I miss you. I am not satisfied with the spiritual. I long for the tangible, not the ethereal. I wish you were here. Every day, for this whole perfectly beautiful summer, I have wished you were here. To see the kids’ backflips, the hands-free biking, to read the stories written, to listen to the newly crafted jokes. To witness the cousin love when we all get together, to watch the bonds forged, to see the miracle of ties knotted. To allow yourself to know, for real, that you had a very, very large part in the miracle unfolding before your eyes, that whatever else you think you didn’t do all that well, THIS happened.  To remind you to relish in the immense family you helped to build.

Aw, Daddy. I’m a writer. All of that is true. But mostly the whole point of all of this is — I wish you were here because I would sure like a hug. Or just to hold your hand for one more nanosecond. I wasn’t ready to let you go. I’m still not.

Daddy, I just miss you so much.

And holy cow, I bet you’d love to see those backflips at the pool.

 

My dad died. And I’m still waiting to cry for real.

I didn’t cry very much at the funeral.

I didn’t cry very much in the days before, either, but that was due to busyness. There were plans to make, flowers to choose, a Mass to plan, a scurry to find an organist to replace the one the church has a contract with but I haven’t ever been able to stand. There was shopping for dresses for myself and my daughters, a new pair of khakis for my son. Details. It was all very busy. There was also the small matter of writing something, since I’d agreed to speak at the funeral. I might claim to be a writer but I am not a public speaker. I have been known to weep while giving poetry awards to middle school students.

Any tears I had inside me must be cemented away, if I was going to get through. Any leaking, the dam would explode.

 

M&D 50th invite

On May 25th, we had a big party to celebrate my parents’ 50th wedding anniversary. My brother Steve and his wife Trish arranged everything at their club in Riverside, Connecticut. It was an achingly perfect near-summer day, weatherwise. It was an achingly perfect near-family celebration, too — my cousin Maria and her family from Massachusetts had a conflict, as did my cousins Marcello and John, but nearly everyone else came, including Dad’s brother from Florida, Uncle Jack, who had been struggling with some health issues so the mere fact of his flight was more than remarkable, plus his daughter, my cousin Sue, and her husband, also from Florida, with their adorable daughters whom some of us had never me yet. Aunts, uncles, cousins, generations laughing together, a big blue sky atop a crystal water, all to celebrate my parents’ love story.

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It was kind of idyllic, the oceanfront scenery and the kids frolicking and the grownups talking and everyone laughing and the picture-perfect day that lasted well into the evening. I could almost forget how, despite remembering every tiny detail for my little family’s outing, from bathing suits to changes of clothes and shoes and extra diabetes supplies, I actually forgot the insulin. So Ray had to do a 30-minute-each-way back to my brother’s house after Mitzi announced her pump was empty. Except for that, the day was nearly perfect, full of hugs and laughter and speeches and being-togetherness.
Mom and Dad glowed.

Dad’s cough didn’t seem to trouble him very much that day. IMG_4991

The cough started a few months before, I think. Doctors treated everything from allergies to acid reflux. Often keeping Dad from sleeping, my sister, who had been living with my parents in the past few months, confided that it sounded tubercular, half-joking. I know the cough was exhausting, even preventing him from traveling a few hours north to us in Massachusetts, for my Joanna’s first communion in mid-May. But by the anniversary party, he seemed okay. A rumble here, a rustle there. It didn’t stop him from standing up during the meal and, for the first time in my entire life, overcoming his introversion to talk about his love for my mother, the love they shared, the journey they travelled together.

No, the cough didn’t seem to be a problem whatsoever that day. May 25.

After that weekend, I settled back into the end-of-the-school-year routine at home. Tests, projects, field trips, six sports spread among the four kids. Schedules. A week after we got home, on June 9, Mom called to say Dad was in the hospital with extreme stomach pain. After four days of tests, heart issues, more tests, a couple of biopsies, Dad was released with a diagnosis. Liver cancer. On Monday, June 16th, a meeting with doctors resulted a treatment plan. The news was grim, but we are La Famiglia, and we all rolled up our sleeves. Life had never been easy for Dad or Mom or their road together, and they never did anything but work hard and believe in each other — and the rest of us, well, we were going to give some ass-kicking wherever required on our loved ones’ behalf. Liver cancer was no exception.

During that week, Dad was exhausted, in-and-out-of-awake, sleeping mostly in his office armchair. He had perked up on Father’s Day when some of the local grandchildren came by with cards and hugs, but was too exhausted to talk when we called from Massachusetts. Rest was what he needed, for sure. Phone calls could wait. Father’s Day was just another day, and another day was coming. We believed that.

A PET scan was given on Thursday, June 19, my kids’ last day of school. It was a struggle for Dad to get to the car, let alone into the machine, but surely it was the various medications interacting in bizarre ways. Of course. It couldn’t be more than that. A call was in place to the doctor. Obviously, an adjustment in meds was required, so we wanted to get on that right away.

All along, I talked with Mom every day, as much as I could. She was honest, ever faithful, and always stoic. Always the next step. Always the fight. Never the fear. Always the positive, the what’s next, the pull-up-your-bootstraps-and-get-it-done. Ain’t over till the fat lady sings. Always.

Almost always. I knew things might be serious one day that week when she almost cried. She almost said words of despair. Almost said words that were fatal but she knew if she said them she’d never get to take them back. Almost words. That’s when I started to get scared.

The kids had their last day of school on June 19. On June 20, the phone rang at 7 a.m. Now, in the school year, the phone ringing at 7 a.m. is commonplace. But that day? That day we had no school and the phone rang and the monotone phone voice said “call from CONNECTICUT” and Ray leapt out of bed before I had time to find my glasses on the nightstand and I knew some kind of shit had hit some kind of fan because no one ever calls at 7 a.m. on a non-school day. Ever.

It was my sister. Dad was back in the hospital via ambulance. Unresponsive. No word about anything. No, you don’t need to come yet. I told Ray to get in the shower to go to work. I smoked a cigarette. I made Ray his breakfast and lunch and had some coffee.

Forty-five minutes later, the phone rang again. My sister again. She spoke a bunch of words that made no sense to me, words like system fail. No recovery. Come now. I wasn’t sure if it was her tears that muddled the meaning of her words, or my own mind. I made her put Mom on the phone. Mom didn’t cry or falter. The words were the same as my sister’s had been, but Mom’s words were clear, bold-printed.

Come now. But don’t drive yourself. I don’t want to worry.

Two hours later I was on a train. Three hours after that, I stood in the ICU at the hospital, staring. Dad was hooked up to 19 different tubes. I knew he would be; my brother Harry had told me what was going on when he picked me up at the train. But hearing and seeing were different things. I was paralyzed. I didn’t know what to say or do. Then Mom leaned over and kissed Dad and said, “Honey, Jennifer is here, and look at all her curly hair, and do you know she came down all the way from Massachusetts just now just to see you” and Dad rolled his eyes in my direction and sort of sat up and maybe he saw me so I kissed his forehead and I said, “Hi Daddy. It’s okay. It’s. Okay. I’m here, it’s Jenny and it’s okay.”

Ray drove down that night with the kids. In the meantime, Mom, my three siblings and I had met with doctors and with the hospice team. Dad’s liver was so far gone and his other organs were slowly shutting down that there was nothing left to do but keep him comfortable until the end. Later that evening he was moved to hospice. Until the end.

IMG_7741Less than three weeks earlier we’d been toasting 50 years of marriage. Less than three weeks since we’d spoke and loved and hugged and been alive together.

The next day, my mom’s sister and brother-in-law came down from Massachusetts. Mom’s little brother came up from New Jersey. My kids came to the hospital too. By then, Dad was comfortable, tubeless. He looked like he was sleeping, even snoring hugely from time to time, which made my kids laugh. They murmured to their Pop in varying awkward kid ways, first unsure what to do, then seeing it was okay to give him a kiss and laugh and tell him a story or two. There were muffins. The kids were okay — hugging and touching and awkwardly stroking Dad’s arm — even if the adults were less so. The nurses said Dad wouldn’t last the weekend. But they were wrong.

He was waiting, it was clear, but what for? My oldest nephew, Dad’s oldest grandchild, aged 15, with whom there was a tremendous bond, finally visited, after an understandable internal struggle. My mom’s littlest sister, who was only 12 when Dad and Mom married, and who barely remembered a life without Dad, was able to talk to Dad on the phone. So did Dad’s brother in Florida. Finally, my niece went to the hospital. The same age as my Mitzi, my niece and Dad had more than a tremendous bond, and I know she also struggled with going or not. How to see him last. How to remember him. My heart broke for her.

M&D175And yet Dad waited. There were a couple of times in the next day that he stirred and I smoothed his forehead and he opened one eye and seemed to see me. “It’s okay, Daddy. It’s okay.” And then he’d settle back into a silent sleep, until the next time he stirred and someone else — Mom, Michelle, Harry, Steve — would comfort him once more. Sleep was easy with morphine and Adavan. Michelle and I played the Eagles on our phones propped on his pillow, and the five of us laughed and told stories to Dad (with Dad?) for hours. It was the longest period of time the six of us had been alone together since the summer days of New Hampshire.

On June 24, we half-heartedly wished my brother Steve a happy birthday. I meant to get him a Hostess cupcake from the convenience store on the way to the hospital that morning, but got distracted. By then, the days were weirdly the same, at least for me. The kids and I were staying with my brother Harry and his wife, Michele, since Ray had returned north for work that couldn’t be put off. Harry, Michele, and I would wake up, get the seven kids ready for the day, and take care of morning business. By noon, Michele would take the kids to the pool and Harry and I’d go to the hospital. Around 7, I’d return to give her a break. Harry would usually stay for a bit longer.

On June 24th, Steve’s birthday, Dad had developed a rattle in his throat, due to the failing of his swallowing reflex. I thought he looked uncomfortable; the nurses acknowledged my concern, though all agreed that the brow furrow was a natural wrinkle in his forehead, nothing new, but if it continued and I was still concerned, they’d give more Adavan. I didn’t argue. Usually, Mom and my sister left around 6 p.m., as they’d been there since around 8 a.m. That night, on June 24th, no one seemed eager to go. Finally Mom and Michelle left, Mom remarking that maybe she’d come back with Michelle that night. (Michelle had taken to returning around 9 p.m. Sometimes Steve was there and Harry. Or Michele. The hospice floor had no visiting hours — you could come and go 24/7, because the death watch had no time frame and even the security guards knew it).

 

I left around 7, knowing Michele needed a break from parenting my kids. She brought my brother dinner and some ice cream. They sat with Dad and talked softly with him for awhile. When the nurses came to adjust Dad’s body position, Harry and Michele left to give the nurses space. They probably hung out near the elevators, away from the patient rooms, softly chatting about everything and nothing. A few minutes later, an orderly ran up to them. Come. Now. So they did.

And Dad drew his last breath.

My sister Michelle was on her way to the hospital when Harry called with the news a few minutes later. So Michelle turned around on the highway, to go home to get Mom, who only ever wanted during all of this to be with Dad at the very end.

And Harry called me, too, as I was wrangling a houseful of kids to their beds. When my sister-in-law came home I went to the hospital. Mom and Michelle were already there. I held Dad’s hand until the warmth faded and his skin was cold and still I could not let it go, kissing his forearm repeatedly, like I do sometimes with my children when they let me. And then a few minutes more than that. I finally suggested Mom wanted privacy with Dad. So we all left.

I have no idea what a person says to someone who has been the bulk of her world since age 15 or so. Is there any way to say goodbye to half of yourself?

It was June 24. Less than a month since celebrating 50 years of marriage, plus a few years of love before that. Dad was only 71 years old.M&D200

The next day I told my kids.

Then there was a lot of busy, including the pressure of writing and speaking. As usual, I wrote until the last minute.

I had yet to really cry. Even at the wake, when I watched the grandchildren finally take my advice of writing notes to their Pop — thankfully, Mitzi knows I always keep a notebook in my oversized purse — one by one tucking them into the pocket of his suit coat. At the wake, where so many people came to share their love and shock, some from so very far away it was almost ridiculous and yet so very touching I couldn’t catch my breath.

I had yet to cry.

Even at the funeral. Watching my husband and cousins and friends carry Dad’s coffin to a hearse. Spreading a cloth on the coffin. Listening to the prayers and songs I’d helped to choose, all expressed with supreme love and compassion by people who actually cared about Dad and me and my sister and brothers and mostly my mom. I had yet to cry, even when I had Ellie on my right, silently bawling, and Joanna on my left with her own quiet nonstop tears and next to her was Cooper and then Mitzi and how could my arms ever be that long and strong to comfort them? So I stretched and they cried, and I curled around their tears so tightly that I couldn’t shed my own.

My brothers spoke, at the end of the service, and oh my gosh, so eloquent and they too cried without shame but continued their words even through their tears and those words leveled me. And they broke my heart, with their words and their tears and their nakedness.

I still didn’t cry.

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I’m supposed to be a writer. Not a speaker. My dad wasn’t much of a speaker, but he was overflowing with emotions and words that begged to come out. The only time I heard him talk in front of a crowd was the month before, on May 25th, to honor and express love for my mother.

My dad died on June 24th.

I had to speak. I had to be as brave as he had always been.

So this is what I said. I wrote these words and I stood up and read them out loud and I did not cry.

 

 

I had a hard time figuring out what I wanted to say today, and some wise writer friends, who have come to know Dad a little bit through Facebook and my own stories, suggested that I just write him a letter.

So I did.

Daddy, 

As I write this, I am sitting on Harry’s deck just after I woke up. It’s the sort of early morning you’d really enjoy. The landscape is glistening with last night’s rain, and the air has a chill that belies the predicted awful humidity. The sun is starting to peek over the tall trees Harry keeps threatening to cut down, and there’s a faraway sound of a neighbor doing yard work. It’s the sort of morning where you’d be up early, as usual, and if you had no appointments or clients, you too would be outside, blowing the mess off your deck, or maybe just sitting, as I am, watching the sun climb in the sky, thanking God for another day to enjoy and for all the people we’re lucky to love.

I was trying to think of my earliest memory of you, but very old memories are my brothers’ area. Sometimes I think I write in order to find my memories, every word scribbled in hopes of unlocking moments in time from long ago when I was very young. It’s often hard to separate true memories from family legend — all the stories told so many times that they have a life of their own, or from the hundreds of familiar photographs in albums or in slides that are burned in my mind 

I guess it doesn’t matter how the memories were created, just that they exist.

I seem to have more of a sense-memory, feelings, recollections of touch and sound. For instance, I remember you hardly ever got to sleep late, but when you did, there was nothing better than to crawl into bed with you, to be silent and close against your still form. Even in those quiet moments, I knew you would always protect me. 

As a child, I took you for granted, as children do. As an adult, I can look back and truly appreciate all the amazing sacrifices you made, your uncomplaining energy and commitment to whatever you were doing. I took for granted that you left the house every day by 6 a.m. to go to work, and didn’t get home again until around 8 p.m. The five-hour-each-way trips you made to New Hampshire every weekend in the summer, just to be with us. I know that you weren’t always able to be there for every performance or field day or tennis game or band competition, but I never resented that, because I knew that you’d be there in a heartbeat if you could, and you were with me in spirit. Because there were so many times you were there for real. The New Hampshire moments, the times at Indian Lake where you pushed me back and forth in that red plastic boat, the time that you and Uncle Jack built the deck and we had lobsters in the wading pool, weekends of raking leaves when we “helped” and you didn’t care that we made a bigger mess for you to clean up, the way you brought me things like Swarovski crystal figurines whenever you took a faraway trip. 

You were also there for the middle and high school years, when drama overflowed in my world. You didn’t always understand what was going on, but you always gave me a hug and assured me that, whatever it was, it was going to be okay. Especially if I went in another room and talked with Mom. Despite the drama, I think it always made you happy to have so many of our friends in and out of the door – especially if it meant that you could advise them on their future, or tease them mercilessly – especially to tease them.

What a teaser you always have been! That sense of humor! It’s hard to picture you without a smile on your face. From corny jokes, to quoting goofy movies with us ad nauseum – there was always a laugh to be had with you. And you took it as well as you gave it, whether it was when we were little and discovered that it REALLY bugged you to have your socks pushed down, so we sat on the floor in front of you and pushed them down. You pulled them up. We pushed them down. This could go on for hours, it seemed. And you never complained! At least to our faces. Or when we were older, and we would brush out teeth in any other room but the bathroom, because it drove you absolutely bananas – it was especially effective if you had your back to us so we could gesture at each other while you pretended not to notice.

No joke ever got too old with us.

And so it went, through my college years (yes, I know, who can keep track of my colleges, ha ha ha) and through first jobs and various moves (let’s not ever speak of Miami), until I wound up in Boston and started a new chapter. For every step you were there, not judging, offering advice when asked (and sometimes when not). You never forgot to remember – every time the mailman brought a white envelope with your caps-only handwriting, I couldn’t wait to see what article you’d clipped from the New York Times just for me. There would also be a short note of love and a sage bit of wisdom – plus a $20 bill, because you not only believed in supporting my spirit, you also believed in supporting my “miscellaneous fund” account.

By the way, I don’t think that any of what I just said is proof that I am your favorite. I know that, like all parents, you never actually had a favorite – you were most happy with whoever was bugging you less at the moment. So, I won’t even mention the idea that you had a favorite, because I know you have always loved us all equally. There are no favorites. [points to self] 

So, okay, I really did enjoy the occasional $20 bill, but especially over the last fifteen years, I mostly enjoyed your words of inspiration. It’s kind of funny how your journey of recovery almost exactly aligns with my journey as a parent and as a serious writer. No one has been a bigger cheerleader for me – not only for my writing, but more for “me.” You learned some tough lessons about taking care of yourself, and you always shared them – you were the first to tell me to leave the dishes or laundry, and go for a walk. Forget the vacuum – work on my books. You always knew I’d be responsible, but you never wanted me to forget myself in the process. You became a person who tried to live entirely in the moment, and how I loved that about you! Especially when it meant a daily Buddha quote in the family email. (Though I really loved it when you started sharing bad jokes, especially the lawyer ones, but don’t tell Ray that.) 

I hope that right now you are enjoying an endless Christmas Eve dinner with all the grandparents, and the Christmas Day dinner too, with Mom’s cioppino and manicotti and bracciole, with Grandpa’s unlimited spoonfuls of pasta, and walnut-stuffed figs and filled cookies and a little anisette in your coffee, and there is card-playing and tons of laughter — and if possible, that this all happens on a forever lake where the sun shimmers off the water and the breeze tickles your face and the air is soft all around you. And even though we never won a single Christmas game as partners all those years, if they have those too where you are, I hope you continue our tradition of always being one of the pair with the best sense of humor. Also that pugnacious thing for which Uncle Frank always threw an award our way. Wise-cracking and never-giving-up, that is us. I couldn’t have asked for a better kindred games spirit. 

Oh, Daddy, how lucky I was to win you and Mommy in the cosmic parent lottery! How lucky my kids are to have you as their Muggy and Pop – and not just for the goodbye Oreos or for the unlimited computer time or the nonstop pool time or Chinese food for twenty. I know you didn’t always think the sun rose and set on the 10 of them, at least not every day, but danged if you and Mom didn’t always made each kid believe it was so.

There is so much to say, Daddy, a million moments to remember…but I think you already know. I think you always did.

And you know what? It turns out, I remember them too.

Every one.

Huh. Imagine that. I remember.

Daddy, I love you.

Take it easy.

 

My dad died on June 24, 2014. He was 71 years old.

The tears have come a bit, here and there. But I’m afraid to let them flow, unchecked. Because if they come, I don’t think they’ll ever stop.

Maybe I just miss him too much to cry.

Or maybe right now, tears are not enough. Not nearly enough.

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Diabetes Jeopardy!

Sometimes I wonder if anyone in my house can remember a time when diabetes wasn’t always on our minds.

I can’t, not really.

It’s become part of our normal, the routine, something like washing your hands before you eat dinner or  the fact that there’s homework on school days. You don’t think too much about it — it’s just there. Most days, anyway.

Some days, it’s all we talk about or think about. Maybe because Mitzi’s very high or very low or is sick or has a lot of sports or she’s rebelling in her preteen way about all the stuff in her life and diabetes management is just another boundary to push.

Yesterday, we all had diabetes on the mind because of MCAS, the state-wide mandated standardized tests given twice a year. Mitzi had her first round yesterday, so, starting the night before, we prepared. Not for the academics, though — we prepared for the blood sugars.

MCAS is a unique annoyance for Mitzi (even more than it usually is for every other child or adult who has to suffer the ridiculous things). If her blood sugar is too high, she can’t start the test when the other kids do — and can’t even start until it’s normal. And if it doesn’t normalize in enough time that she can take the test on that particular day, she has to make it up, missing class. If it happens on test day number two — well, more makeups, more missed class. Avoiding that scenario was in all of our best interests.

Blood sugar was on my mind when I woke up. What would it be? How early should I wake her up to test and find out? A low-carb breakfast was on the menu (scrambled eggs, while the other kids got pancakes). Would it be okay?

Luckily, it was. Normal at breakfast, even lower throughout the day. We discussed it at dinner, praising Mitzi for managing herself so well all day, and slipped into a general discussion about diabetes. Mitzi tossed questions at her siblings: If I pass out, what do you do? (Call 911, tell them you’re diabetic! Cooper even chimed in, “Get that diabetic epi-pen thingie with the glucawhatever!”) Is 150 a good blood sugar? (Yes!)

Joanna knows her diabetes stuff!

Joanna knows her diabetes stuff!

This led to the idea of Diabetes Jeopardy! After we finished eating, the younger three headed for their showers and Mitzi grabbed a bunch of index cards. She made categories and questions and assigned monetary values. When everyone was ready, they played. I watched from the dining room, struggling with something on the computer I was doing for Ray.

It was adorable. And impressive. A $400 question: What do I need if my number is high? All the kids were quick, but Joanna’s “BUZZ!!!!” was the fastest. “MORE INSULIN!!!!!” she shouted, jumping up and down.

Three years ago it made me sad that my small children had to know all of this. That a three and four year old had to recognize their big sister’s physical symptoms of highs and lows and know how to tell Mommy and Daddy about it.

Now it just makes me proud.

Mitzi finds it terribly annoying, the way one of her siblings will ask her if she’s bolused for the apple she’s eating, or the way that they might find me to see if it’s okay that she’s having a snack. The way everyone at various times asks her where her kit is, if she tested yet, and what the number was. Mitzi is eleven, and everything about her parents and siblings is annoying. But especially when they butt into her diabetes business.

But last night. Ah, last night, it was okay, and for the first time ever, diabetes was kind of fun.

The New Normal in A Mom’s World

Things have been crazy around here the past couple of  months.  The whirlwind of the end of school.  Personal stuff  I didn’t feel like talking about.   Then A Mom’s World turned upside down.

See, the thing about being a Mom to four kids is your attitude shifts a little with every new child.  You get a bit casual, laid back.  If I freaked out over every sniffle, sneeze, fever or fall, I’d be in a padded room right now.  Someone around here is always getting a cold or strep throat or a cough or a stomach bug.  Ellie falls down 93 times a day — and has the scrapes to prove it.  Everyone whines and complains and takes drama to levels Arthur Miller would envy.  I’ve grown to be somewhat easygoing these past eight years.  Wait, watch, see.  Treat, comfort, move on.

So when Mitzi complained about a tummy ache, I let her stay home from school.  By the afternoon she perked up.  Two days later, the same thing.  A week later, when she was tired and short of appetite, I didn’t think much of it.  The end of the school year blues.  Ellie had strep throat the week before — maybe Mitzi had picked it up.  Nothing to worry about.  Wait, watch, comfort, move on.

The day IT happened, Mitzi, normally a very early riser, slept till 9 a.m.  Then she dozed on the couch for a few hours.  Again, she perked up for a trip to the grocery store and our final Girl Scout meeting/party, even swimming a bit.  But by the end of the meeting she was exhausted.  At home she returned to the couch.  Ray took the other kids to Ellie’s tee ball game.  Mitzi and I watched Iron Chef America.   Then, the vomiting.  Clean up, bath, bed.  By then I was a little more concerned, but assumed she’d gotten a stomach bug, maybe.

In the hours after midnight, she went downhill fast.  She drank cup after cup of water, used the bathroom repeatedly.  Time went on and she got very weak.  Her skin seemed to stretch around her bones, as if she’d somehow lost 10 pounds (that she didn’t need to lose).  Then her speech began to slur.  Had she swallowed some pills?  Gotten a concussion?  Had a stroke? 

Dawn neared.  Should we take her to the emergency room and sit in the waiting area for a couple of hours?  Or stay here until we could call the doctor?  We opted for the latter.   Ray brought her to the first appointment of the morning in the doctor’s satellite office, 30 minutes away.  Meanwhile, I put Cooper on the school bus, and let the little girls watch TV.  I sat at my desk, stared at the computer, waiting for the phone to ring.  Meanwhile, the doctor took one look at Mitzi — by now unable to walk on her own or say anything coherent — tested her blood glucose (over 600), then called an ambulance to take her to the local hospital.  She was far too sick to make it to a Boston hospital.

Medicine was given in an effort to lower her blood sugar — which, it turned out, actually caused swelling in her brain.  But eventually she was stable enough to be transferred to Children’s Hospital in Boston, where she was admitted to the ICU.  It wasn’t until the next day that I learned just how scarily sick she was.

An aside here — Ray was with Mitzi the whole time.  We have one car, and he’d taken it.  In what just might be the single most beyond-the-call-of-duty acts I’ve ever seen, two angelic nurses from the pediatrician’s office drove the car to me.  They gave me information, comfort, counsel while standing on my front porch.   They are amazing people.

Of course, the story ends a happy one.  Mitzi stabilized overnight, and by morning was speaking in full sentences.  She bemoaned missing Field Day for the second year in a row (last year she came home early with strep throat).  She complained about the gazillion IVs and other gadgets hooked up to her body, and watched Harry Potter and The Spiderwick Chronicles on my cousin’s iPad.

The diagnosis of juvenile diabetes was a shock to us, with no family history or clue that it was brewing, but far less devastating than the news other families at Children’s Hospital received during the week we were there.  It could have been much, much worse.

Ray and I have quickly become adept at managing her condition.  Mitzi, in her usual first-born manner, is already the Boss, counting carbs and planning meals and testing her glucose levels throughout the day.  And true to form, she’s stubborn and demanding and tantrum-throwing when I put my foot down about having ice cream for her morning snack (“But Mom it’s got protein and fat and carbs!”  “But you can’t eat ice cream all the time.”  “You are the meanest Mom ever!”)

So things are back to normal.  Well, the new normal.

I have a great deal to say about the new normal — how it’s changed us all, how it continues to change us, how we are redefining the world around us daily.  How amazing Ray was and continues to be.  The forty-seven ways my family stepped up and helped us through the crisis.  The support of our friends and neighbors in our wonderful town.

And I’ll have a lot to say about me, the mom.   I have all the regrets and self-blame that parents experience when things like this happen.  How I should have seen the signs that are so clear when I look back on them.  How I should have taken her to the doctor far earlier rather than being so casual about the symptoms.  How I want to keep all of my children locked in a room now, to keep them safe and protected — but how I know I can’t.  How painful it is now to watch and wait and hope for the best, when before it was so easy.

Because even when you’re prepared, the worst can happen.  And sometimes there is nothing you can do to stop it.

And that is what I need to accept.  Right now, though, it’s a hard lesson that I’m not willing to learn.

Time to believe?

I don’t believe in much.  I question just about everything and tend toward pessimism in most circumstances.

And yet, in the still of early mornings, I think I can believe in the mysteries of the universe, a possible God, the interconnectedness of all things, the power of a wish, and maybe, just maybe, the presence of fairies in the twilight hour of each day’s end.  I sometimes believe in fate, karma and that you can in fact influence things far away and otherwise out of your control.

So today I silently chide myself — I shouldn’t have opened my big, fat mouth.  See, yesterday I had a long chat with Mom on Grandma’s status, her upcoming surgery, the good news that was suddenly before us.  Later, I confessed to Ray, “Every time the phone’s rung this week I expected the worst.  I’m glad that’s over.”

Then today, Dad’s phone call.  Off to New Jersey.  Grandma didn’t have a good night.  They don’t know if it was a stroke, or what.  We’ll call later with news when we have it.

Shouldn’t have opened my mouth.

Then the kids, this morning, making things for Grandma to cheer her up, odd little sculptures made from cardboard tubes,  crayons, shiny stickers, construction paper, tape.  What they are, I don’t know.  But they are happy little things.  I’m pleased that the kids thought of Grandma on their own, pleased that they are the kind of kids who like to cheer up other people.  But their timing needs work.

Last year, in one of my cleaning frenzies when I was going to finally live an uncluttered life, I came across an envelope filled with the kids’ drawings and a note by me.  It was for Grandpa, unmailed, dated just days before his death.  Why didn’t I mail it?  I can’t remember.  I’m not very good at getting things out on time.

Or in time.  I gather up the kids’ newest projects.  There’s no mail until tomorrow.  Will that be time enough?