Don’t Repeal the Affordable Care Act! Lifesaving Medicine Should Not Depend on Wealth. (a plea to Republicans to choose lives over politics…)

Yesterday I picked up Mitzi at the end of an afternoon with friends. In the car, while she snapchatted, I was listening to NPR as they reported on the efforts by the President-elect and the Republican party to repeal the ACA. I didn’t know she was listening until we got home and she made me keep the car running so she could listen until to the end of the report.

Yesterday, nine days after she turned 15, she realized that if the ACA is repealed, she could die, because of this little pre-existing condition that insurance companies might not approve.

She is terrified that, because she has type 1 diabetes, some day, health insurance won’t be available to her. Because, pre-existing. And without that coverage, she will die. 

Mitzi was diagnosed at age 8, and yesterday was the first time she ever said out loud that diabetes might kill her.

But not the disease in an of itself, but because her life-saving medicine would no longer be covered.

Before you scoff, realize this — until the Affordable Care Act (aka Obamacare), many insurers denied coverage to those who needed it the most, even (or especially) for pre-existing, life-threatening illnesses. (Because, high cost to them, you know, to cover medicine that saves lives, as opposed to the low cost for people with no existing conditions who don’t need life-saving measures or medicines.)

I know ACA is not perfect. I know that. But until there is a program in place that ensures coverage for those who need it the most, please please please speak up to your senators and representatives and  to insist that ACA not be repealed — or even modified —  until another plan is proposed, vetted, approved, and in place.

I have a 15 year old daughter who should be focused on school, friends, sports, music, books, and figuring out how to grow up. How to continue to be a leader. How to continue to care for toddlers as a camp counselor and babysitter. How to be a better field hockey player. How to record her music. How to live her dream of being in the FBI or being a high school teacher.

Instead, she is now worried that she is going to die before realizing those dreams, because her government just pulled her medicine from her — without insurance, staying alive will cost her thousands of dollars each month which is likely out of her reach.

So, GOP, Paul Ryan, Donald Trump, all of you — mine is one kid out of thousands, one story out of millions. Edit, adjust, change the plan if you must, but it is immoral and unconscionable to repeal the ACA without an alternative in place.

Lives depend on it.

I mean, they actually, not theoretically on paper or on a chart or in a tweet somewhere, real lives actually depend on this.

Stop. Put lives ahead of politics and the whims of a novice politician. Consider. Be thoughtful. Be thorough.

Or people will die.

 

People

will

 

die.

 

 

On Special Needs Advocacy, Diabetes, and Ignorance

Wow, I haven’t blogged in quite a while. So much has been going on that I haven’t kept up with it all.

I’ve spent much of my time in the last couple of months helping my husband with his campaign for re-election our town’s School Committee, on which he served for the past six years. Elections can bring out strong passions, and usually candidates are supported (or opposed) on just a few issues.

This election was no different, and over the course of a few weeks it became clear that one issue on the table was advocacy for children with special needs — and that people didn’t believe my husband wasn’t a good candidate on this issue. When, on a local forum, it was pointed out that as a father of a daughter with special needs, Ray felt personally invested in the cause and has advocated for years, this assertion was dismissed by the original poster, with a “pfff, his daughter has diabetes, and so what that he makes sure a nurse accompanies her on a field trip, that’s whatever.”sad girl

I held my tongue then, but now that the election is over and my husband lost his bid for re-election, which I believe was in no small part because of this issue, I am going to speak up now. Loudly. Clearly.

Diabetes is not “whatever.”

Diabetes is more than a nurse on a field trip (though that’s nice, because, you know, life threatening stuff).

Diabetes is a medical condition that can, and does, affect a child’s ability to think and learn.

Signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor. — Desmond Schatz, M.D., quoted from the Juvenile Diabetes Research Foundation

Now, imagine trying to think and learn at school while suffering these symptoms.

Diabetes CAN and DOES have an impact on a child’s ability to function and learn at school.

This is why, for years, parents of children with diabetes have had to fight to make the science understood, and to insist schools accommodate these children and support them equitably. We’ve had to do this because diabetes is dismissed as a “whatever” medical condition.

This is why every year my husband and I sit down with nurses and counselors and other school staff, to craft carefully the words to ensure these accommodations are met, and that my daughter is not dismissed by next year’s teachers as “whatever.”

This is the same fight parents of children with other special needs have also been fighting for years and years.

The needs are different, but the fight for parents is the same, to advocate with science on their side:

That the child with ADHD isn’t just being a troublemaker.

That the child with executive function disorder is not simply sloppy and disorganized.

That the child with dyslexia is not stupid.

That special needs children just need to be understood and helped be the best students they can.

We have been fighting this fight since our daughter’s diagnosis. Because even after all the science and exposure and explanations and advocacy, some people, like that person (or persons) in my town don’t understand what life with diabetes is like.

My husband lives with his daughter’s diabetes every day, and because of that, has always worked hard to make sure that other children with other special needs get the support and advocacy they deserve. He wants for them what he wants for his daughter. He’s fought for them as he has for her.

And to that person on that one local town political forum, I just want to say, your ignorance was sad and painfully clear, and you did exactly what you accuse others of doing to you and your children — not understanding or supporting families with special needs children.

Discriminating. Judging. Dismissing.

Shame on you.

 

 

Back-to-school brings scissors, pencils, cliques, and other sharp things

It’s mid-August, finally, and many schools in our country are back in session. In my neck of the woods, however, we still have a month to go before that first bell. There are beaches to visit, day trips to take, ice cream to scoop, camp-outs to plan, and all kinds of lazy days spread before us like a month of red-checkered picnic blankets.

Still, it’s mid-August, and while that means the summer’s last hurrah for the next few weeks, for many parents, it also means thinking ahead to the upcoming school year. In my house, we have summer reading (and notes) to finish, as well as math homework (yes, you read that right, we have math worksheets). Amid all the catalogues and online ads and social media posts of faraway friends’ kids having first days of school — first weeks even — there has been this gnawing thought.

What will this year look like for my kids?

Honestly, I’m not concerned about academics. It’s not that my kids are so brilliant. It’s just that I can handle helping them with schoolwork. It’s neat. It’s predictable. Sure, it’s often a challenge at one time or another, but it’s manageable.

What I wonder is what the year will look like for them socially.

talking behind backUndoubtedly it’s my own baggage that makes me feel this way, year after year. I had some struggles in middle school, sixth and seventh grades in particular, when both years found me an outcast for some alleged insult to a friend. (Yes, both times a friend heard a rumor I’d said something that I didn’t say, and suddenly no one in the grade spoke to me for months.) I remember this keenly, and have always been on the lookout for my kids. Are they happy? Making friends? Being a good friend? Enjoying school? Enjoying after school?

It’s usually a case of “so far, so good.” I don’t care about popularity and I don’t care about numbers. I think it’s okay to not be friends with everybody, but I try to teach my kids to be kind to everyone, even if they don’t want to foster a friendship. What I do care about is that each of my children has one or two good connections, true connections, honest and mutual friendships, to count on.

This year, I’m not so sure what to expect. This year, I have my doubts, and also my fears, about what back-to-school will mean for one of my children in particular, because for the first time, in the last few months I have witnessed some genuine Mean Kid behavior. Straight out of a Disney Channel movie.

The first incident happened at the end of the school year. My kids and I were walking to a nearby soccer field for someone’s game. Our route took us through the neighborhood across the street, a neighborhood filled with families and kids, many of whom are friends on some level with my kids. We rounded a bend and I saw them, the three peers of my child, stopped a distance away, chatting. My nerves got edgy; these kids are only peers, not friends, though they friends were at one time. But not any more, as far as I could tell by the sudden lack of phone calls. The were No Longer Friends.

We walked on. The trio walked as well, but stopped every once in a while to chat, or look at a phone or a flower. They saw us; I saw them recognize us. Yet no one spoke, not them, not my kids. Finally we were near enough when I could use my Mom/Teacher voice to say, “Hey there, Name, Name and Name!”

No one answered. By now my blood was a little hot. Never in my wildest dreams would I have imagined any of these kids (I know their PARENTS!) ignoring an adult. But ignore me they did. We closer still, until we were a few steps behind, and we all finally had to turn onto the single-file path through the woods, a cut-through to the fields. One of my kids was on a bike, and wobbled slowly just behind the ahead-walkers, and still no one spoke. As the path widened, my bike-rider shot past them, as did my kid, the peer and former friend of these three, and still not one spoke. Not to that child or the siblings, and not to me. And I thought, “What the what?” and “So it begins.” whisper1

Fast-forward a few weeks, to summer vacation, the local pool. Neighbors, friends, peers swimming, enjoying the hot July sun. They were there again, peers of my child, though not all three, but some, with another in the mix. At one point I gave the kids money to get some overpriced treats from the snack bar. Kids’ peers were perched at a picnic table, slurping on Italian ice. My kid walks past them. One says hi to my kid, brightly, friendly. My kids says hi back, equal in tone. Once she’d passed entirely, with back to them, that peer turns to the group, says something, they all laugh, harshly, glancing at my kid before laughing some more. Again, I was caught off-guard, again I was shocked, embarrassingly so, because one new group member, I’d thought, was my child’s friend. I wondered when that had changed. And how.

Fast-forward to today. Same pool. This was not witnessed first hand, but told to me by one of my other kids. Above scenario, almost to the detail, except one or two of the Other Kids had been replaced by one or two more. Same hello. Same whisper. Same laugh. (Apparently, my child who shared the story spoke up, called the Other Kids out, and basically got a “whatever.” Same child hugged his sibling, and said the Other Kids were a bunch of jerks. I had to kiss them both.)

My child shrugs off these incidents when they are mentioned. My child is kind and forgiving. My child calls them still calls the Other Kids friends. My child is an optimist, always able to see the good side of any situation, of most people.

And even as my child shrugs, I see the ghost of confusion in the corners of the eyes. Even as my child is too proud to acknowledge the insult, I see the flash of hurt, quickly replaced by a smile. Even as my child would never say something bad about a peer, I see the slash, ever so slight, in the layers of the skin.

We talk, and we don’t talk. I speak in circles, mining for the heart of the matter, edging closer. I have to be careful; the ground is very unstable. Too much, and it will all cave in, closed off forever. This is how we progress. Talking, listening, subject changing, whispers in the dark of things that are too raw to say in the light of day.

School starts in a month. These peers, and others, will be omnipresent; it is a small town.

I wonder what September will bring for this child. Re-connecting with true old friends? Finding new friends? Real Friends? I don’t know.

But I will bring all that I have, including the sized-for-the-soul Band-Aids that, for the first time, I fear my child will need.

band aid heart

 

 

 

 

Beyond Folklore — When a 13 Year Old Googles Family History

It never occurred to me that any of my kids would reach beyond family folklore to learn about their history, but I guess in this age of technology and immediacy it was inevitable.

This past weekend, Mitzi Googled her great-grandfather, Tony Mottola, and printed out about 2 dozen pages of condolences and comments from a Frank Sinatra forum after news of his death in 2004, written by folks who were huge fans of my grandpa.

I mean, I know how much he meant — to us, to music — but for the first time, I think my daughter understood that Papa Tony was actually and for real a legendary guitarist. Not just the person who made hand-lettered signs on posterboard for her arrival at the house on Lenape Island in New Jersey, and always had a balloon for her, and the living room always had a spinny chair to ride until it made you nauseated, and always, always there was some candy in a thick plastic container on the living room table.

She might have learned that he was not just the person who was married to Grandma Mitzi (yes! who my daughter was named for!) who had far fewer pages of condolences when she died in 2009, but impacted everyone she met. My daughter might have learned that he was not just the great-grandpa who had a set of chimes on the living room table and some thick-fabric mallets to play them with — though maybe now she knows that those oh-so-old chimes (now at her great aunt’s house) played the NBC (oh, let’s call it a ring) tone, and maybe now she knows that the house on Lenape Island had those chimes because her great-grandpa for years played in the Tonight Show Band on NBC with Johnny Carson, and was more than once a featured performer on that show. She might have also learned that weird fun fact that Lenape Island, where my grandparents lived, was shaped like a guitar. (FOR REAL.)

I don’t know what happened to those printouts, but I suspect they are tucked away in that special space in her room that 13 year olds are likely to have, to be looked at from time to time. Next week, next year, years from now? I like to think that some day, her son or daughter will find them and ask, what? And Mitzi will tell a story. Then another. Then they will be stories of his love for grandma, for the first Mitzi, and all she was, without the fame and the albums and the fan sites, the stories of family and home and love, with Tony and Mitzi and their kids, one of whom became my mother, Mitzi’s grandma, and the other three children, my aunts and uncles, my cousins, their children, and all of our stories, and then there will be more learning, more stories, more memories to be tapped, written into heartbeats, hugged into matter. And, yes, there will be that thing about Papa Tony being a famous guitarist and all of that, but by them my Mitzi will have learned what my siblings and cousin knew but didn’t realize until we were grown up — that for all the fame and recognition, what Tony and Mitzi cared about the most was family.

And eventually, what my daughter (what all my kids will tell), what my first-born will tells her children will be all the stories that she can think of, balloons, candy, love, family, and all the small details she is finally starting to hear and remember, the stories that are the foundation of our family, which no one but us cares to document on any site able to be Googled.

Are there more stories? You betcha. On beyond Google, this family’s history awaits my children, and those that follow.

Those tucked-away printouts? Just the beginning.

Summer Solution: The “I’m Bored” Jar and This Mom’s Attempt to Curb Her Kids’ Addiction to Electronics

I’ll admit it. In the past six months or so I became very slackish about monitoring my kids’ use of electronics.

Chalk it up to the soul-crushing winter we had in the Boston area, when around 7 feet of snow was dumped on us in a few weeks’ time, maybe, the never-ending days with no sun, my own struggles with depression, the battles fought with kids pumped full of pubescent hormones.

10532866_10204498117587582_7559916131582535266_n

After the 3rd (but not last) blizzard of 2015

I frankly lost the will to care. Sure, I would’ve preferred that they were reading or crafting or playing board games, but heck, that would’ve required refereeing and/or organizing, which I had no strength for. With electronics — the phones, ipods, xbox, Netflix — they were quiet. The house stayed clean. Day after day, bit by bit, that long winter, my resolve was chipped away. I simply lost the will to fight.

But then spring came, and I never got them back on track. The habit had been established. Too many days of too much slack had given them the idea that it was okay. It’s a lame excuse for me as a mom, but there were plenty of days I didn’t try that hard — days where one of the four never had a playdate so of course she could just play Minecraft, days where I had work to finish and was just happy everyone was quiet, days where the 6th grader came home and had sports and 3 hours of homework ahead of him and I just thought I’d let the poor kid veg out for a while.

School ended last week, and I let them sleep late, every day. (And sleep late, my kids do. Rising before 10 a.m. is a rarity, given the chance — and some will sleep until mid-afternoon if I let them.) I let them eat cold cereal when they wanted and I let them binge on electronics and I let them stay in pajamas and I let them basically run wild.

On Sunday night, that all changed. It was that watershed day when I couldn’t stand it anymore. Too much had gone wrong. I was too frustrated and fed up. I couldn’t stand the mess. I couldn’t stand the way I was being ignored when I said to turn things off. I couldn’t stand another moment of me being THAT mom who let her kids chose Minecraft videos on YouTube over reading a book.

On Sunday night, I decided to take back control.

I found an old mason jar. I cut up squares and strips of paper. I found a Sharpie and armed myself with a glass of wine.

I made the “I’m Bored” jar.I'm Bored Jar

The kids watched me, after a while, intrigued when I wouldn’t tell them what I was doing. My husband fed them pizza while I worked. Finally I was done, and explained to them what this was.

For the rest of the summer, there would be a 2 hour limit on electronics. Period. TV, phones, ipods, xbox, Wii, computer. I changed the passcodes on everything that I could. I took away chargers.

I told them they were free to amuse themselves, but if they couldn’t come up with something to do they could pick something out of the jar. Do that thing. No trade-ins, no swapping, no negotiating.

So what went in the jar?

I recently came across this little booklet that I’d been saving for years. I think it had been in a toy or game we’d gotten at some point, and it wasn’t age-appropriate at the time — by the time it was, I’d forgotten about it, I guess. The booklet had 100+ ways to create…things. Inventions. Ideas. Projects. It’s broken down into groups of 6 or so things to do, all using the same group of items you’d have around the house (macaroni, string, paper towel rolls, etc.). You’d get a prompt like “design a piece of exercise equipment a dinosaur might use” or “produce a lock for something” or “change the design of a book to allow more than one person to read at a time.” Use the list of items to do the thing.

My first step was to number my blocks of paper from 1 to 101.3. If a kid picked that number, they’d have to do that activity.

By the time I was done with that, the jar had plenty of room, so I moved on to strips.

“Write a letter to…” and I filled in a family member’s name, one per strip.

“Write and perform an originalI'm Bored slips song.”

“Illustrate a book.”

“Climb 5 trees.”

“Run 20 laps around the house (outside).”

“Organize the bookshelves into alphabetical order.”

There were some chores thrown in, but not more than 10 or 12. “Clean a toilet.” “Wash a window.” “Organize the shoe bins.” “Weed the garden.” “Wash the car.”

On and on until the jar looked reasonably filled. I taped a label to it (please don’t judge my awkward art skills), and set it out.

Today was the first day. My youngest was up first. She was eager to start — she wrote and performed a song for me (“The Parkour Song” because, Minecraft.) She went to the grocery store with me. She scrubbed a toilet. She swept part of the driveway. She drew a comic strip. She was on fire, saving up all of her time until mid-afternoon.

Meanwhile, her next-oldest sister used up her all of her minutes before she was even out of pajamas. The brother used up most, saving 10 minutes in case he needed to text someone later (ah, 12yos). The oldest, the 13yo, who pooh-pooed the whole thing, is already in hot water for going over her time.

But eventually, the three younger siblings were outside, inventing things, making up games, obstacle courses, running around. Just like they used to do.

IMG_1671

“Create a parkour”

IMG_1674

A blind-man’s maze they invented

IMG_1672

Extreme hopscotch (I honestly don’t know what the rules are here)

Some kids eventually negotiated extra time by doing extra chores. (Hey, that works!) Because of this, all went over the 2+ hours, and none have time tomorrow.

So, we’ll see. On day one, the Bored Jar was a success. It’s new. New is fun! It’ll take some time for these four to remember what a creative, thoughtful, experienced life is. And I still sort of feel like a failure, being THAT mom who couldn’t keep her kids off electronics, that mom who gave up, for a little bit, who had to resort to this sort of thing to unplug her children.

But more than that, I’m curious about tomorrow.

I’m sure everyone will be bored. And annoyed. I’m prepared for an uphill battle. They aren’t in any camps, so it’s just us, all day, every day, until school starts again in September. I’m still working from home. Will my will continue to be strong? Will I cave? Will they rebel? (I mean, come on, it’s four-to-one around here.) I’m sort of excited to find out.

Either way, the kids will remember this as the best summer of their lives…

or the worst.

And I’m more than okay with it.

I’m already coming up with new ideas to add to the Jar…

On advocating for early cancer detection — no matter what your trusted doctor says. SPEAK. UP.

I was just thinking about all the people in the last year, all of these loved ones who died very shortly after abrupt end-stage cancer diagnoses. It has been awful. Not a single cancer was a so-called “lifestyle cancer” (like lung, which too often is NOT from smoking).

But many might have been treatable with earlier diagnosis.

I was thinking about this, not entirely because of my recent losses, but for the losses of others in my world, the recent losses others have suffered.

I don’t know what the answer is, but please, please, advocate for early detection, and PLEASE question your doctors, who are often awfully hogtied by insurance regulations and have to always treat the simplest symptoms rather than testing for the horrible thing they suspect.

When she was just three, my oldest child went for almost two weeks with undiagnosed pneumonia. Her only symptom was a fever. That’s it. No coughing, no sore throat, no stuffy nose, no rash, no nothing. For days — days, and then weeks — the well-meaning but rule-following doctors put us off for lack of other symptoms. Wait and see, they said. It’s just a virus, they said. Hydrate. Give Tylenol. Eventually, the (way overdue) chest x-ray told a different story. After two weeks, by the time they figured out what was going on, her chest — not just her lungs, but her ACTUAL CHEST CAVITY — was filled with fluid. She needed surgical intervention to save her life, to drain the fluid and repair the damage, and spent more than 10 days in a hospital. (Incidentally, this event may or may not have triggered the years-later onset of Type 1 diabetes, an autoimmune disorder which many experts believe is directly related to an emergent viral or bacterial onslaught, such as was her pneumonia.) Had anyone done the chest x-ray earlier, just days or a week earlier, perhaps the outcome would’ve been different. On many levels.

But insurance companies — and because of that, well-paid and well-intentioned doctors — don’t approve anything at first. When it could count. Err on the side of statistics is the motto.

After all, most fevers are not chest-cavity-filling pneumonia. I get that. But an x-ray after, say, day four? Maybe justified. Maybe more than justified.

And then there is this.

My dad died of end-stage, too-late-undiagnosed liver cancer, but his doctors for many, many months treated his symptoms with prescriptions aimed at relief of reflux and related stomach issues, never once scanning for something else — despite his prior cancer history.

My mother-in-law is battling for her life. She conquered cancer twice before, yet despite that documented history, no doctor was able to effectively test early on based on her new complaints. The protocol was just not approved, based on a checklist which had nothing to do with any apparent rational thought. She bested cancer twice before and might lose the war now simply because nothing was done sooner. Because steps could not be skipped.

It’s not entirely the fault of the medical practitioners.

As patients, we are routinely assessed by medical professionals and treated for the simplest diagnosis. Because that is the rules of the insurance chart. You can’t move up the chart unless all the other steps are checked. There are rules for tests, depending on age, medical history, cancer statistics, etc. Days, weeks, months pass. And all the while, disease marches on, destroying everything in its wake.

I had a mammogram today. Not because it’s on the medical charts as “necessary” (I think I might be younger than the recommended age, but these days only just?) but because 7 years ago I had a lump.

It was a scary time, that lump and all the lumpy-related scans and biopsies and nights cuddling with four kids under the age of five and reading Good Night, Moon and The Very Hungry Caterpillar and Where The Wild Things Are and wondering when someone would give me an answer and whether or not I would be alive to see my four tiny kids be potty-trained, never mind being alive to see them get married and have babies of their own so I could know they read Good Night, Moon or the story of Max  — or all the stories yet to be written — to those yet-c0nceived babies I absolutely would spoil in the way only grandmas can.

I wondered whether or not I would be alive to see my babies get to third grade.

It was a scary time, and thankfully, that ended okay. So now I get an annual test. It’s not the best way to spend part of the day, but the clear scans make the boob-smushing worth it.

Yet many women of my age (mid-40s) don’t have this exam. (Insert gratitude here for my lovies who survived even worse than I went through.)

Even more of us don’t get colonoscopies.

Insurance companies are even starting to question the funding of routine pap smears for anyone younger than, oh, 80 or something?

And almost no medical practice authorizes the regular chest screenings of patients who smoke (choose to smoke? Are addicted to nicotine? Maybe that’s why they don’t authorize tests? Because dirty smokers deserve to die?)

Almost none of us are screened for heart disease, other than through lifestyle questions.

I am in awe of the medical tests we have available to us in this lifetime. It is STUNNING to think of what doctors can see, can visualize, can touch and fix with all this technology! What we can do healthwise — what illnesses we can stop, what awful we can fix — it is amazing to consider.

We HAVE to become a society that not only expects, but demands our trusted doctors (not the faceless robots that answer our button-pushing insurance phone calls) to err on the side of caution. We HAVE to insist on something more than the wait-and-see. We deserve more than the lowest-common-denominator health care.

We have to insist on early testing. By doctors — not the paid lobbyists. We have to insist that doctors be allowed to save lives, and not just the lives of 3 year olds whose moms write poignant essays on social media, or the lives of all people who shop at Trader Joe’s and Whole Foods and somehow proved something about their commitment to quality of life and are subsequently more deserving than everyone else, especially those who eat hot dogs. Or Cheetos.

We have to insist that everyone deserves proactive health care, that no one should be denied appropriate care because some chart dictated otherwise.

Babies, moms, dads, drummers, cashiers, homeless, lawyers, teachers, taxi drivers, florists, waiters, mail carriers, the owner of the yarn shop in the town square.

Everyone deserves more than the lowest-common-denominator health care.

Everyone.

Even the dirty smokers.

SPEAK.

UP.

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.