I’m not really a helicopter parent. I’m not. I encourage my kids to go outside, to play independently. I’m happy to actively advocate for my kids, but as Jessie got older, I stepped back more and more. I talk to her teachers once a year, on Open House night, and she completely manages her own academic career. She makes her own decisions about clothes, about a social life, about seeking out Fellowships and internships. I encouraged her to visit her sisters at college, to go to college parties, and told her that if she wanted to try drinking, it was okay with me, as long as her sisters were there, she limited it to one and was careful. She manages her own money, found her own job, and buys her own clothes.

Jessie is fiercely independent and I love that about her. I respect her. I trust that she’s old enough, and mature enough to make her own decisions about her life. She’s in charge of her college search, making her own choices about what classes to take, which teachers to approach for recommendation letters, and manages her own distance learning.

Which is why I was so surprised when she told me that I was a helicopter parent when it comes to doctors. I make all the appointments, talk to all the doctors and chase down the referrals. I don’t entirely trust her to advocate for herself, to be honest with the doctor about symptoms that don’t seem all that significant to her, but might well be indicative of a serious problem. She’s got celiac disease, and has been dealing with a lot of joint pain and major fatigue. So when a routine ANA test came back positive, I jumped into mom mode. I called three different hospitals, and begged for an appointment before her Fellowship started. It took two days, and multiple calls all over the place, but I got her a tele-health appointment with a pediatric rheumatologist out in Boston.

I got the requested blood work, brought it down to her pediatrician so that it would be ordered out of her office and then made sure they added in a celiac test. Brought her in for the blood work, but on the way home, she asked me to please let her manage the process from here on out. She wants to be the one calling for the results, making sure that the results are sent to the doctor in Boston. I can be in the car, I can provide suggestions and helpful tips – but she wants to be the one driving. As she put it – it’s a lot easier on her when I do it, and she knows that I’d rather be the one in charge, but if she doesn’t start, she’s never going to know how to make her own appointments, how to advocate for herself.

She made so much damn sense, I had to agree. I had to really acknowledge that as much as I think I’m a free-range, laid back and trusting parent, raising a kid who knows she’s capable and can talk to me about anything – I’m a complete control freak when it comes to medical issues. I like to know exactly what’s going on with my kids, to ask the questions that might not occur to them, to know what to watch out for, what to worry about, and what’s no big deal.

I think any parent who’s had a kid in the PICU is going to be a little extra when it comes to medical issues. Jessie’s issues aren’t life threatening, but there’s a lot more than I ever dealt with at her age.

We compromised. She’s making all the calls, and doing the vast majority of the talking. But I still get access to her on-line medical records and can check and double check and obsess over results to my heart’s content.

This letting-go process isn’t easy, and I’m not at all sure that I like it. Turns out I’m fine with letting her grow up when it means picking AP classes, talking to her teachers, even taking the T to get around in Boston. But letting her be in charge of her own healthcare feels like an impossible ask. But ask she did, and so I’ll try. I’ll honestly try.

And selfishly be grateful that Sam’s just as happy to let me do all the talking to all the doctors. Forever. And Julie’s still too little to fight me on it.

So this is what we’re doing now.


Right now, I’m sitting in my spot – this one remaining piece from a sectional where every other part of the couch has been destroyed to the point where we threw them out. So I sit in this one section, the corner piece, that I’ve crammed in between a hand-me-down couch and a futon that I have unfolded and spread a sleeping bag on it for the coolness.

And I’m sitting here, watching Marc teach the kids poker. Only the way he teaches them poker is by swearing a lot and sharing drinking and gambling storiesi from his past. Julie appears to be some sort of poker savant, because she’s an accomplished bluffer, and for the second time, the whole table erupted into swearing and yelling as the tiniest member of the game kicked everyone’s ass. Again.

There is an alarming amount of profanity.

We found out today that Sam is allergic to everything. Grasses, weeds, ragweed, oak trees, cats, dogs, dust mites. For the past 14 years, I’ve been nagging him to go outside and play, and he’s desperately allergic to all of it. We bought an air purifier, an allergenic mattress and pillow case cover. I’m more than halfway convinced that his abdominal issues are caused by constant and unending allergies, and am now not sure if we should see an allergist, go back to his gastroenterologist or just call his pediatrician and throw myself at her, begging for guidance.

I also have to take Jessie into the doctor’s office tomorrow, because I think she’s developing carpal tunnel syndrome. Four months of remote learning, summer work for four AP’s and an upcoming fellowship at the Federal Courthouse is not a good combination for my girl.

Julie is drifting through the longest summer vacation ever. I’m the most concerned about her for the upcoming year. Lilli is moving to Boston and Emerson will be mostly back to normal. Sarah’s college hasn’t made any final decisions yet, but she’s resigned herself to potentially having the fall semester at home. Jessie is going into her senior year, and honestly, she likes working from home just as well. Sam is going to continue with TECCA, and while there will definitely be some changes, we have to get his IEP up and running and he’s going to be in charge of his education. At least a little bit.

But Julie – oh, I worry about Julie. Will schools reopen? Will they be safe enough for her to go? Her fifth grade year is entirely up in the air. I could pull her out and homeschool her. So we wait, hoping against hope that the school department (which failed so badly at trying to come up with something for March-June) will magically come up with the perfect compromise between being in the classroom and being safe.

All told, it’ll be close to four months that we have been doing this. Quarantine, social distancing, covid-19-ing. Marc’s scheduled to go back to work on July 7, and we started this on March 13. That’s a long time to be basically at home, 24/7, all five of us.

The nice thing was that it was (and is, because we’ve got a few weeks to go) just… nice. Everyone basically likes each other, Jessie and Julie didn’t kill each other, I didn’t lose my mind listening to them battle and brawl. Sam finished up a normal school year, Julie started unschooling in March, and Jessie embarked on nearly independent study course of her junior year. Marc taught himself Hebrew, designed and ran two different dungeons and dragons groups, and lost a bunch of weight because he’s walking nearly 24 miles a week.

I crocheted a blanket and a half. I mean, I’m sure I accomplished other tasks – but mainly, I tried to keep the girls from killing each other, tried to keep the house clean, and crocheted. I read a lot.

Jessie starts her fellowship in a few weeks (the same week Marc starts back to work), and after that, things are going to kick in high gear. I’ll have both of them out of the house (if Jessie isn’t in Boston, I’ll ship her to my mother’s for quiet), and just my two little ones. And of those two little ones – ONE IS GOING TO BE 14.

I’m going to stop there, because the idea of Sammy being 14 is a lot to process.

Two and a half months into quarantine, self isolating and social distancing. The end is in sight, at least for this first part. Marc is going back to work at some point – he’s been in contact with his boss, and they’re hoping to start back up in two weeks. Not sure if that means Marc will be back to work in two weeks, but at least it’s a sign that hopefully by the end of the summer, he should be back to something resembling normalacy. No idea what normalacy is going to look like in the age of covid-19, and I’m still pretty sure that we’re going to have a rough fall…

Jessie got the Nelson Fellowship, and there’s talk of it actually taking place, partially, maybe, in Boston as opposed to on her computer. She wants to ride the train in, and I’m terrified of it. Marc’s more concerned about her being in the courthouse, and less worried about the train – so we’ll discuss and debate and come to a decision together. At 17, she’s certainly old enough to be a huge part of this discussion – and reality is that I know she’s capable of doing everything right and taking all the precautions. But you can do everything right, take all the precautions and still get sick.

We’re spinning from covid-19 into protests and the news coverage I listen to in the mornings has shifted from reporting deaths from coronavirus to riots and police brutality. I can’t keep up with it – and I certainly can’t figure out how to explain it to my kids. Julie just wants to go back to school and Sam was already pretty sure that the world is dangerous and scary and he’s better off at home. Everything that’s happened in the past two and a half months has served only to reinforce that.

We’re in this odd holding pattern, on the cusp of everything. Buying a house, sending Jessie off to college, starting Sam’s orientation and mobility and more independence in terms of education. Julie’s starting fifth grade, which I’m refusing to think about because it’s not possible that my baby is going into fifth grade.

But everything feels tentative and like we’re waiting.

That’s just where we live now.

I’m not unaware of how much better we have it than others. We’re not financially struggling to put a roof over our heads or food on the table. We’re all healthy. We all like each other, so spending vast amounts of time together is lovely and not a hardship.

But there is so much that we just don’t know. And not being able to count on those things that we used to be able to rely on is tricky. Will Marc go back to work this summer? Will colleges go back in the fall? Will Jessie get to go to her Fellowship this summer? Will fifth grade just be another lost year for Julie?

I think Lizzie has a UTI. Yesterday, I happened to glance down at her while she went pee, and it was red. Which is terrifying, but it only happened once. She also was asking to go out more frequently last night, and squatting her little butt down but not actually going. We called the vet but I think they’re on reduced hours, and were already closed. They called back first thing this morning, and asked that we bring her in with a urine sample.

Collecting a urine sample was… interesting, but Marc did a great job. Weirder than trying to do it with kids, but a lot less of trying to explain what was happening. Other than a weird look Lizzie shot his way as he shoved a tupperware container (which we will be throwing away) under her, she was cool with it. She’s not acting sick at all, eating and drinking fine, and was bouncing around with her blue ball last night, so I’m not super worried. But nobody likes when their dog is sick.

Sam is finishing up his antibiotics today, and the vomiting seems to be mostly gone. I’m ramping up on the allergy meds, giving him zyrtec in the mornings and benedryl at night, but he seems to be better. He’s got an orientation and mobility session on Saturday. I’m happy that we seem to be at least moving forward a little bit on getting him the services he needs. We’ve got a meet and greet with his 8th grade teacher this afternoon, and another one next week with his math and science teachers. Eighth grade seems… way more grown up than I’m ready for him to be, and I know the hard work of transferring over ownership of his education is going to be kicking into high gear over the next five years.

Family dynamics seem to take center stage, especially when nobody has anything or anyone else to distract them. For the past few weeks, the kids and I have watched movies on Friday night, and Marc has… not. I nagged to get him to join us, and now he wants to pick a movie. Which is not unreasonable, of course, but the problem is that he likes movies for different reasons. He’s feeling hurt that I nixed violent movies and Jessie specifically asked for a movie that won’t make him sob sentimentally. I’m trying to manage that, and failing. There some other stuff bubbling around Marc wanting Sam to engage in wrestling or grappling, and Sam having no desire to do so – and my being in the middle of that isn’t helping either. But it honest to God feels like they both need me there to translate to the other – so that’s a rough situation and I’m clueless as to how to proceed.

Julie’s education over the past eight weeks has taken a hit. I’m not concerned – because I basically unschooled Sam for a year or two, and he spent a year not doing any academics at all – and was able to pick up in the 7th grade and manage perfectly well. The school has been providing work online, but it’s all below her grade level, and feels like busy work. She’s so stressed right now, and I’m worried about her general unhappiness tipping over into situational depression, so I haven’t pushed it. She’s reading a ton and working on math most afternoons with Marc, so that’ll just have to suffice until we get a better plan in place.

Jessie thinks she might have gotten the Nelson Fellowship. Her teacher says she’s got it, the judges she interviewed with yesterday said they’ll let her know next week. It’s a full time job, starting on Sam’s birthday and running for six weeks. It’ll probably be a hybrid of zoom meetings and in person sessions at the Federal Courthouse in Boston – which raises so many concerns. One – keeping the house silent so that she can have quiet zoom meetings is next to impossible. Two – the thought of putting my baby onto public transportation and into a crowded courthouse with a raging plague goign on doesn’t make me feel warm and fuzzy. But it’s such an amazing opportunity for her, and we have to find someway to live with Covid-19, because it isn’t going away.

One of the nicest parts of this whole self isolation is the relationships. Also one of the hardest part is managing those relationships, but that’s a separate post.

For the most part, Marc has been working 24/7 forever. So having him home means that the kids needs to relearn how to talk to him. He needs to learn how to talk to the kids. And most importantly, I need to stop being the go-between. All four of them have the tendency to try and filter information through me – and I’m working hard on trying to break that habit. Not just my own habit, but also encouraging them to talk directly to each other which is oddly harder than you might imagine.

But my favorite part of it is the relationships between siblings, specifically Julianna and Sam. Sam and Jessie are really close most of the time, but Julie and Sam haven’t really been close since his accident. Not that they don’t love each other, but actually enjoying spending time together was a lot more challenging. They play now. Actually play. Yesterday, I actually said – “Hey – if you’re going to be loud, you have to go play outside.” Because they were that loud, wrestling around and playing.

Jessie had big plans for this summer, and when covid-19 hit, we weren’t sure if any of it was going to happen. Turns out that it all probably is going to happen, which is both thrilling and terrifying.

Tougas, the apple orchard where she was scooping ice cream all last fall, is opening, on a reduced staffing level, but they’ll be in touch as the summer goes on, and she’ll probably be good to go for the apple season. And the other big news was a fellowship at the courthouse in Boston, and it sounds like that might happen as well. That involves her commuting into Boston every day, working basically full time for six weeks.

All of this would fantastic, and a huge opportunity for her, but … covid-19. Do I want my baby on the subway? I mean, I don’t want her on the subway on a normal day, but that’s a separate issue. I don’t know if it’ll be “safe” out in the world any time soon. I don’t know if it’s safe to send Marc back out either, and now I’m freaking out (on a quiet, internal level) at the thought of any one of my people going back out into the world. It’s taking a lot of energy to not freak at the thought of Julianna going back to public school. I know that she wants public school, she is definitely a child who’s happier in brick and mortar school, but is it safe?

We’ll have to balance out safety with sanity. What are the risks of exposure? How can we minimize them, while still getting a fifth grade education, working in the federal courthouse, or earning a living?

I don’t think the pain of a miscarriage ever really goes away. It’s been 18 years for me, and I’ve got three healthy, happy kids now, and there are times when I’ll hear a certain song that brings me back to that time, and I’m swept up in the sadness and grief and loss. It’s not often, but those babies I lost in that first pregnancy are a part of me that’s separate and distinct from all three of my children. Marc just wished me a happy mother’s day, and said that he still remembers that day, so long ago, when I first become a mother. And I think he was thinking of the day when our oldest daughter was born. But the day I became a mother happened a year before that, and that experience, the pregnancy and the loss, that was what made me a mom.

I remember everything about the pregnancy I lost. I remember the slow realization that I could be pregnant, the thrill of buying a test, that first moment of absolute joy before the reality came rushing in. An incredibly unplanned pregnancy, a brand new relationship, and no idea what would happen next.

I remember the next eight weeks. They were blissful. Terrifying, because I was so scared of the future, but so sure that this baby wanted to be born. That this was meant to be. When I lost the baby, when the ultrasound showed that it was twins, and one was still viable, the confusion, the relief and unimaginable grief… it was all so overwhelming. Losing the second twin, and all that happened afterwards… it was simply the worst thing that had ever happened to me, and it changed me in ways that I still can’t entirely express.

That miscarriage brought me Marc. I don’t know if we would have made it otherwise. I was scared of relationships, afraid of being too vulnerable, of getting too close. I was so completely broken after the miscarriage there was no way for me to put up any walls. I was completely honest and raw and lost. He saved me. I felt safe with him, and only with him. He gave me a place to be, he loved me no matter what, and he gave me Jessica, Sam and Julie.

Being a mother is fundamental to my identity. It’s who I am, it’s what I do. The temper tantrums, the midnight vomiting, the nights in the ICU and the hours sitting at IEP meetings. The tears and the cooking, the tiktok videos, the barbie dolls and legos. All of that is my life now, and I’m profoundly grateful, every day, that I have the opportunity to do this. My path to motherhood started in loss, and grief and terrifying fear that I’d never be able to have a pregnancy go to term, that I’d never hold my baby in my arms.

I’m a mother, and I’m forever grateful to Marc, because he loves me and supports me, in every way. I’m grateful to Lilli and Sarah, and all that they bring to my life. I’m grateful to my Jessica Mary, my Samuel Earl, my Julianna Ruth, and all the lessons they’ve taught me. All the love that’s right there, all the time. And I’m grateful to the twins, because without them, I don’t know that I’d have all the rest. They’re the way I started my motherhood journey, and my story will always start with them.

Will this ever end?

And if the answer is of course it will, when is it going to happen? How?

Covid-19 isn’t going anywhere. There have been rumors of various treatments that might or might not help. Vaccines that are whipping along the approval process but are still months away. I feel like we need to start figuring out a way to live our lives, knowing that this disease is out there, all the time.

My house is riddled with masks, and I hate them. I hate that I can’t smile at people, and have started enthusiastically saying hi to people. This ends up with me in a lot of awkard conversations with people thinking I want to have long conversations when I really just want a replacement for being able to smile. But I know that wearing them is the only way that we’ll be able to go out in the world.

On a side note – worldwide pandemic is not exactly helping me to get Sam to willingly leave the house.

Plans are still totally up in the air for the fall. Will colleges start back up? Will the girls go back to school? What will that look like? Constantly gaming these scenarios out takes up an unreasonable amount of time for me, but then again, there’s not a whole lot else I’ve got going on.