Sam’s an atheist.  I like to think he’s an agnostic, but the truth is that my boy is firmly convinced that there is no God and there is only science.  You can only believe in what you can prove – and why would I want him to believe lies?

This is just… wow.  I’m struggling with this.  I’ve always said I don’t care if my kids grow up to be Jewish – because truly, I don’t.  My converting to Judaism wasn’t done because my mother had somehow failed to keep me Catholic.  I patted myself on the back – I’m not one of those parents who’s all invested in their child’s religious future.  I’m not going to put all that weight and responsibility on my kids’ shoulders.  They can be whatever they want to be, believe whatever they want to believe.  It just never occurred to me that they wouldn’t believe in God.

There are a couple of things I keep reminding myself –

1 – This isn’t about me.  My journey with religion, organized and haphazard, is my own.  His relationship with the Divine is his.  And it’s not a sign that I’ve failed him somehow.

2 – Sam doesn’t handle uncertainty well.  He never did, honestly, but he’s a lot less capable of dealing with it now.  And you can’t PROVE God.  You can prove science.

3 – The kid has been thru hell.  His life is a lot better now, but the reality is that he learned lessons that some people never have to face.  He learned that he’s not safe, that tragedy happens all the time, with no warning, and there’s no way to really protect yourself 100%.  He learned that even when I’m standing right there, he can be unbelievably hurt.

4 – He’s probably got lasting, if not permanent, damage to his optic nerve that will impact him for the rest of his life.

I suppose it’s entirely natural that he’d be questioning the presence of a benevolent God at this stage of the game.  There’s a part of me that’s wondering why I’m not questioning it.

But I’ve never questioned whether or not God existed.  I wandered my way from Catholicism to Paganism and Wicca to Judaism.  And it’s always been absolute for me.  Of course God exists.  You can call it whatever you want, the Divine, God, Goddess, angels – but there’s SOMETHING there, and I feel connected and a part of something bigger than myself.  Bigger than my family, than this world.  It’s as clear to me as the fact that the sky is blue.  It just is.

I’m trying to be all zen and chill about this too.  Marc is a questioner, and has been for as long as I’ve known him.  I’ve never felt comfortable (even after converting to Judaism) with organized religion.  Judaism makes sense to me, in part because it’s a religion based on actions.  It doesn’t ask me to believe, just to act.  Sam’s got his own journey – and it’s going to start in the foundation we’ve built for him.  With holidays and Shabbat and a Jewish identity.  He’ll have to decide where he goes from here.  They all do – it’s just that the girls aren’t in the same place.  Jessie’s a questioner as well, but she’s firmer in her Jewish identity.  And Julie – my Julie’s still pretty sure that she wants to be a rabbi.

Actually, when I think about it now, Sam’s living up more to his heritage, as my son and as Marc’s son – he’s a questioner.  He’s a thinker, and he takes nothing for granted.  He believes in what he knows, and what he can prove.  I can work with that.

I just don’t want him to be alone.  And hopeless – and for me, belief in God has always been a source of strength.  Even when it was hardest for me, after I lost the twins, and nothing made sense – I still believed in God.  I still believed in SOMETHING.  Maybe he get there again.  Maybe he won’t.  But it’s his journey, not mine, and I need to remember to step back and let him have it.

Lovely spring weekend

It was a lovely weekend.  It still seems surprising to me, that things are so EASY now.

Friday night, we decided to go out for Marc’s birthday.  Going with all five kids to a restaurant is not an easy feat, because they all get loud and crazy, plus restaurants are still a little tricky for Sam.  Adding to the complications was that Marc works an hour and a half a way, in a job that rarely allows him to walk out the door at five o’clock.  So we went to the mall.

I know, it seems a little goofy, but it was actually brilliant.   The three older girls danced off as soon as we got there, and I took the younger two wandering all over the place.  We did the escalators an absurd number of times, and wondered about what to eat.  It’s hard with Sam – still.  He likes a lot more than he did, but making choices can still throw him for a loop, and he needs to really see the food (and smell it, especially) before he’ll know if he likes it or not.  So he had a minor panic attack, but I pulled him away from everyone, and talked him down.  He ate french fries and pretzels for dinner.

Saturday morning, I got up early and went to work.  Marc was home with the kids, and by the time I got home, my head was throbbing and the house was in shambles.  We were supposed to go to a party that afternoon, but ended up canceling and staying home.  We napped (oddly enough) and just chilled out all day.  Sunday wasn’t a lot different.  Instead of working all morning, we went to a wedding for some friends at the Beth Israel.  Then we came home.  It was a rainy afternoon, and we just chilled, played card games, read a lot.

It’s still so lovely, just to be at home, with everyone happy and not in any pain.

Winding down and staying the course

The school year for the girls is almost over.

The next two weeks are a whirlwind of field trips, doctor’s appointments, first semi-formal dances and awards.  Graduations (for Lilli and Jessie) are coming up.   Eighth and first grade are almost over.  They both had a really, really good year.

After the chaos and confusion of last year, this was really a year of regrouping.  They both settled in, and reverted back to where they should be.  In a lot of ways, Julie just kept going.  She’s so much younger than Jessie, and it was easier to keep her steady.   She had Sue Gravel, first of all, and we started her seeing a therapist last summer.  That was real source of support for her too – and she was able to work out a lot of the trauma around the accident and the months afterwards.   This was a tough year for her, in a lot of ways, but she’s doing so well now.  We were able to discontinue the therapy and she’s finishing up the year in a much stronger, happier place.

Jessie is the one who changed the most, of the two girls.  She’s much happier this year, much more social and content with who she is and what she wants.  She pulled in so much in seventh grade, and it’s been lovely to see her blossom this year.  Her dreams are back, she laughs more and socializes easier.  I think last year was tough on her in so many ways – she revamped all of her college and professional goals to working with children traumatized by medical issues, researched colleges that would be best for that major.  But this year – she’s back to being a Communications Director, working at the White House (she wants to be either Toby or CJ from West Wing).

My first year of homeschooling is sort of over.  I plan on continuing thru the summer at roughly this same pace – it’s more relaxed, and there’s a huge focus for me on getting him healthy and out of the house.  We covered a LOT this year.  I started his math curriculum from scratch, and we went thru the first seven and half books in the Life of Fred series.  I’m planning on spending the next six months on getting him thru the next five books, and then we’ll dive into the middle school curriculum.  We spent the fall on electoral politics, exploring the history of elections in the United States and the women’s right to vote history.  Then we started at the very beginning, and completed the first book of Story of the World (ancient history) and are mid-way thru the second book (up to the Middle Ages).  Science – we did mostly biology, exploring biomes and different animals that live in them.  We did most of one biology textbook and then switched to a living book on Zoology that he LOVES.  In terms of ELA – he read (or listened to) close to 100 audiobooks.  We did all of the Rick Riordan series (a couple of times) which dovetailed perfectly with the ancient history curriculum, and then he listened to a whole bunch of other authors as well.   We studied parts of speech with a formal ELA textbook, as well as madlibs.

My plans for next year are to continue with both the science, history and math curriculum.  I’m going to add in keyboarding and spelling next year, as well as more formal writing.  He’d also like to add in cooking classes, with the goal to start making Shabbat dinner every week for us.



A perfect party

We throw a lot of parties at our house.  Nothing huge, just a general sort of open house thing, where we make a bunch of meatballs and some veggie stew thing, and the kids run around outside, and the adults all hang out and talk.

And Memorial Day 2017 will go down as one of my favorites.

Sam is still recovering.  After this past year, I’ve gotten used to my very anti-social boy.  I’ve gotten good at not apologizing for it, and giving him the space he needs.  If he wants to opt out of a party, and sit in his room with a video game and an audio book, I let it happen.  I’m used to him panicking over what to eat, and diffusing the situation before it escalates.  It happened so often, it just became my life.  This was just the way my life was.

But yesterday – he was… back to Sammy.  We had Abby-with-a-bow over, and Julianna was in heaven.  They spent all day outside, running around and creating chalk creations.  Coating themselves with chalk mud, purple chalk mud.  A couple of his friends came over, and I assumed that Sam had retreated to his room.  I was shocked and in awe when I realized that he was OUTSIDE, running around with the other kids.  Even after we had pulled the girls in, and thrown them into the tub (one I had to drain twice because there was so much chalk and filth on those two), Sam kept playing with the boys.  He was a delightful host, dispensing ice cream and providing video games entertainment.

I don’t know if I’ll ever get used to this.


A really good day

It was a stellar day all the way around.

Jessie has her first semi-formal coming up, and today was dress shopping day.  On a good day, Jessie and I don’t like to shop, and shopping with the intent to purchase is always a challenge.  I headed to the mall with my mother and both girls.  We started at Macy’s and I swear to God, the poor kid tried on 87,000 dresses.  We tried colored ones, and black and navy ones.  Flowered ones, lacy ones and stripes.  So.Many.Dresses.  At the last minute, just before we left to go try another store, we found a strapless one hanging on the rack to be returned back to the floor.  A strapless.  For my fourteen year old.

She tried it on… and it was beautiful.  She’s so tall and so gorgeous, and there was this one moment, when she had come out and spun around in this dress that looked so much more adult than anything else she’d ever worn – and I literally had to blink away tears.  BECAUSE IT WAS YESTERDAY THAT SHE WAS A TODDLER.  I try to roll with it – they grow up, it happens, thank God.  But mostly, they grow up in little bits and pieces, and I swear to God, it happened with Jessie overnight, and I still can’t get used to it.

Sam went to a birthday party today.  Let’s just sit with that a minute.  Sam went to a birthday party today.  With kids from his old school.   He wanted to go so badly – but he’s wanted to go do things before as badly, and couldn’t get past the anxiety.  I was so stressed about it, because I knew how badly he wanted to go, and was so worried that he’d panic at the last minute.  Or worse, try to go and end up embarrassing himself with an anxiety attack.  But he went.  And enjoyed it, played, ate pizza and cake just like the accident had never happened.

And not to be left out… I had Julianna all day at the mall with me.  She was so patient… I had brought a kindle with a movie downloaded already, so she sat and watched that while Jessie tried the 87,000 dresses.  When we were leaving – she and I rode the escalator.  Five times.   And it struck me that this may well be the last time I have a daughter of mine that wants nothing more than to ride the escalator, over and over again, and wants me to do it with her.  She’s seven, and let’s be honest, I hate shopping.  It really might the last time.

I miss having little ones, I do.  But holy cow, I really do love having these three.  The one that’s taller than I am, and so gorgeous, I can’t believe she’s mine.  The one who’s so unbelievably enduring, who handles the worst life can throw at him and manages to come thru it intact.  And my baby, my little love, with her beautiful eyes and sweet, sweet smile, who still wants to ride the escalator with me.  Over and over and over and over.


Making the impossible happen

So much of Sam’s case is improbable.  Kids don’t get psuedo tumors.  Pseudo tumors are never this aggressive.  They always respond to medication.  The medication never kills off taste buds for months and months.  And perhaps the most challenging at the moment – kids who are legally blind are never completely homeschooled.  They’re always on an IEP, services are paid for by the school system.

Everyone agreed that I had the right to legally homeschool my child.  And everyone agreed that being certified as legally blind means that certain services and technology are provided.  What nobody could figure out was how to make that happen.

Let’s be honest – last year sucked.  It just did, in horrible ways that I don’t think I’ll ever be able to talk about without sobbing.  And the trauma associated with every little bit of it – from the disastrous January/February with the school trauma, and then the horror of the accident, the recovery and the slow descent into blindness… it was just horrific.  And it’s taken months for me to reach the point where I was ready to really fight it again.

In order for him to qualify for the services, I had to put him thru the IEP process, which involved all kinds of testing, a neuro-psych, a FBA, all sorts of other acronym heavy tests that would be hellish for him.  After putting him thru what he went thru, after holding him down for IV’s and spinal taps and anesthesia… my tolerance for forcing him to go thru pain for less that life-saving procedures is non-existent.

So I stopped.  I devoted myself to homeschooling, reading out loud and working with whiteboards and audiobooks.  I focused on therapy, and getting him emotionally healthy, and academically challenged.  I backed off entirely, and took a breath.  Several, in fact.

I just… chilled.  I focused on getting back to normal, on getting the girls settled and secure, on building up his security and emotional health.  On finding curriculum that excited him, and challenged him and made him feel like he was good at this academic stuff.

On Monday, I met with a contact at the Jewish Children and Family Services.  She’s an advocate, who will work with the school system to enforce his IEP.  The IEP that he didn’t have.  The one that everyone said I had to get in order to get him the services he needed.

I came home, and was just so frustrated.  I shouldn’t have to get an IEP in order to get him the services he needs for the disability.  I have a legal right to homeschool my child.  He’s legally entitled to services because he is certified as legally blind.    There has to be a way to make this work.

There is.  I emailed the State head of the MA Commission for the Blind, and she verified that Sam is entitled to services, and nowhere does it say that it’s dependent on his being enrolled in public schools.  And after that, it all happened really quickly.  She referred me to my local contact, and his boss, and they both came out today.  Suddenly, I’ve got a rehabilitation specialist set up to come and meet with Sam and I, to figure out what he needs to make homeschooling easier.  I’ve got a local low-vision doctor who sounds perfect – he’s great with kids, and they’ve set him up with a double appointment, so my doctor-phobic boy can relax and get to know the guy without feeling a ton of pressure to go fast.

It’s like suddenly, I feel like I’ve got a safety net.  I’ve got a team of people working with me to get Sammy what he needs to live an independent and productive life.  It’s not scary and isolating – and I’m not entirely doing this alone.  There are people who actually KNOW how to deal with a legally blind kid.  Know what kind of technology will work for him, and they’ll work with me, WITH HIM, to figure out what he needs and how to make it work.

It’s a whole new world.


I love this time of year.  I love living in this neighborhood during the spring, summer and fall.  It’s just winter when everything falls apart.  But for now, the sky is blue, everyone’s lawn is filled with flowers and the trees are all loaded with leaves.

Marc doesn’t want Julianna riding a bike.  If she wants to – then we’ll talk.   But she’s going to have to ask for it, and I don’t think she will.  She’s got a scooter.  Sam’s bike is taunting me, all the time.  I know it’s there, and I know he wants to ride it, but we’re both hesitating.  Marc points out that he can’t see.  Which is, you know, hard to deny.  And will he be able to see anything if he starts going fast?  How will he know to stop if a tree jumps in front of him?

I don’t have the answers.  So for now, the bike sits.  And we walk.

Jessie is at yearbook this afternoon.  She’s wrapping up her eighth grade year and I still can’t quite believe it.  She’s in the eighth grade, and a heartbeat away from high school, and suddenly I’m the mother of a high school student.  I’m the mother of a child considering college and careers and student loans and oh-my-God-I’m-freaking-myself-out.


Notes from a spring weekend

It was Julianna’s birthday this weekend.

Seven is undeniably a kid.  There’s no way, not really, to pretend that she’s a baby any more.

Friday night we went out to dinner.  Lilli and Julie had discussed it and decided on the chinese buffet.  It’s the restaurant that we’ve been to the most, over the years.  It’s a quick meal, nobody has to wait for food.  It’s relatively inexpensive (or at least it was when they were little and we paid by their age).  Friday night was especially good this time because it was one of the first times that Sam went and there was no drama.  Absolutely none.  There was a split second, when we first walked in, when he looked back at me and I knew that the smell was overwhelming, but I told him that he’d be okay, he just needed to get used to it – and he did.  He ate, just like a normal kid.  I still marvel at it.

Saturday, I worked in the morning, and Marc took Julianna to religious school.  I had bought a couple of kosher cakes and dropped them off on Friday, so she could celebrate with everyone there.  I got out of work, and picked her up from the BI, and then we picked up her friend Trinity, and we went to the Children’s Museum in Acton.  They bopped all over the place, and then we stopped at a playground so they could run around a little more.  We got coffee, and I brought them home for a slumber party.

Sunday, we had her actual birthday party.  Julie wanted an “at home” party, and I was lobbying hard for a party where I paid a couple of hundred dollars and everything was done for me.  Our place is so little – and it turns out the weather was so crappy – but in the end, the party was a success.  We had 12 kids here, and a pinata, and cupcakes and popcorn.  She got a mint green chair from my  mom, and an easy bake oven from Marc’s parents – and can’t decide what her favorite gift is.

It was a hectic and busy and chaotic and fun weekend.  We crammed in a D&D game for Sam and Marc, and Jessie went to her last Model UN conference and won Best Negotiator.

Julianna Ruth

At age seven, she’s tall for her age, and so heartbreakingly beautiful that sometimes I just pause and stare at her for a while.  She’s got huge brown eyes, perfect skin, and hair that she’s adamant she won’t ever, ever get cut.

She’s above grade level in every single subject.  Except for music, oddly enough.  She’s at grade level when it comes to music.  She loves to read, and can read chapter books easily enough, but still loves picture books to read to herself.  She’s an artist, and a writer, and still loves her baby dolls and stuffed animals.

She requests that I don’t buy her anything else – she doesn’t have any more beds for any more babies.

She’s growing up, my baby.  She’s sassy and funny, and so incredibly conscientious, all the time.  She plays board games and card games with Marc, more than the other two combined.  She swaddles up the dog, and tucks him in at night (God help him when summer comes).

She’s still my baby.  She’s my buddy, my girl, and I’m so grateful that she’s only seven.

I enjoy her childhood more.  I worry a little bit less.  No, that’s not true.  I worry just as much – but it’s off-set by the knowledge that it’s all so fleeting.  Seven year old Jessie and seven year old Sam are long gone now, and I know how fast this next year will go by.  I know how fast last year went.

Last year was horrific.  It just was.  And it was horrible for Julie – because it was one/sixth of her life.  She lost her brother, for months.  She lost me, in a real sense, because so much of what I was doing was focused on Sam.  Part of the healing process, this year, for her, has been about her remembering and relearning that she matters too.  It’s too easy for my baby to put herself last, to think that her job is to make everything okay for everyone else.

Julianna Ruth – she’s my baby, my love.  Seven years ago today, I was so big and so sick and so sore, and so desperate to hold my baby.  She was worth it, and so much more.  I can’t imagine our family without her.

Happy birthday baby.  Mama loves you.

April vacation confessions

So we’re doing April vacation this week.   This is kind of a weird week for me.  Jessie was home sick all last week with a virus that wrapped up with a sinus infection.  So she’s spending most of the week in various states of agony, trying to figure out math, and prepping for her Model UN conference last week.

I spent all day today doing essentially nothing.  I mean, not nothing.  I did laundry, cleaned the living room, did Sam’s room, homeschooled math, swept the living room (after my vacuum started smoking during the Matzoh Clean Up last week), and walked the dog.  But really, I didn’t go anywhere (other than Price Chopper).  And my kids did nothing.  We watched movies, a lot. I’ve got a migraine, so everything is a little disjointed and weird.

The dog… oh, this dog.  He’s taking pills four times a day, phenobarbitol twice daily, and keppra three times a day.   And he’s still seizing.  Not all the time, maybe once a week or so, but that’s really kind of a lot, when it comes to a seizure and a little dog.

Sam is doing really well.  So well, it still kind of throws me off.   He ate dinner tonight.  Ate dinner.  Ate the dinner I made.  Like everyone else.  That’s just not uncommon – it’s still relatively unheard of.  He’s going shopping, out to spend the day with my mother, and up to Becky’s house for the day.  He went out to fly kites with us the other day.  I can’t get used to it, on one level, and then there’s this whole other level where it feels so normal – I fall back into thinking that I’ve got three kids and they’re all neurotypical, with no special needs at all.  Then I remember that perhaps the reason he wanted to go home from kite flying early was because he literally couldn’t see the damn kite, and standing on hill felt a little too precarious.  It’s this balancing act, of trying to remember the disability, and trying to not have it dominate everything we do.

Julianna is focusing almost exclusively on her birthday next week.  She’ll be seven.  Seven.  My baby will be seven years old.  I remember when she was born, and she was so tiny… the idea that she’ll be as old as her big sister was when she was born is amazing to me.