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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.

Spring

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.

 

First Passover Seder

Progress is measured in small steps.  I’ve said that over and over again this past year, mainly to console myself when the steps are so small, and the journey back to where he was seems so long.  But every now and again, he suddenly takes a leap forward, and it’s such a shock.

Every year, for the past six years, Marc has run the Passover seder for St. Michael’s Church on the Heights.  Every year, since Julianna was a baby.  Because we started when the kids were so young, and it’s obviously done only once a year, it’s easy to look back and remember how little they were, and marvel at how much they’ve grown and changed over the past year.  There was the year Julianna dumped her bowl of soup all over her dress, and had to spend the seder in my sweater and a diaper.  The year Sam got a bloody nose, and bled all over my shirt.  The year that they had the playroom for the kids (we were in a different facility then for some reason), and I spent most of the Seder in the playroom reading while the kids played with blocks.

Last year Sam didn’t go.  It was too soon after the accident.  He was still in a lot of pain, and most of last year is a blur.  I don’t even remember it, the actual event.

I knew there was no way he’d go this year.  First of all, when we go, we sit at a head table, in front of everyone.  All eyes are on Marc, and for a kid with social anxiety, the idea of literally being on display, with rows of tables gazing up at him the whole time… and then you factor in the food issues.  He’s gotten a LOT better, but food is still a huge problem for Sam, and his diet is so restricted, there’s no way he’d eat anything, and then not eating would make him more anxious, which would only be intensified by the fact that everyone would KNOW that he wasn’t eating and he’d be even more self-conscious.

I lined up a sitter ahead of time, and she cancelled at the last minute.  I was that certain he’d never go.  I wasn’t even going to suggest it – until it came down to he could go with us or sit at home by himself.   Marc asked if he’d go – and he said yes.  I got clothes out for him, knowing he’d probably back out.  I packed his kindle for him, made sure we had an audio book and headphones.  Told him that I’d feed him before we went, and get him food on the way home if he needed it.   I set up a spot where he could go sit, with all the coats piled up and his kindle and audiobook waiting for him, just behind me.

He went.  He sat at the table next to me, and colored with the crayons, and played with the finger puppets.  He ate matzoh, and tried the soup (didn’t eat it, but tried it!).  He tried the rest of the food too (didn’t eat it, but the fact that he was willing to try it is huge).  Then when he started to get antsy, he pulled on the headphones and sat for another half hour or so, until the dinner was over and I could politely excuse myself with he and Julie.

Progress is measured in small steps.  And God bless the many, many small steps he’s taken over the past year.  But every now and again – one giant leap feels so good.

Just like having another baby

It’s no secret that I wanted more children.  Not enough to go off birth control and get pregnant, at least not yet.  And at 43, the likelihood that it’s going to happen now is limited.  With Jessie going into high school, Julianna moving into second grade, and homeschooling Sam with his vision issues… I don’t have the time, really, to start all over again.

Instead, I got a dog.

I didn’t get Lucky to fulfill a need to take care of a small creature that needs me desperately.  But in reality, that’s what happened.  And that’s why I’m up bright and early at five o’clock, taking care of my dog who’s having a seizure.  Again.

So much fatigue…

Which reinforces – if I needed another reason, on top of wanting to be fully present for Jessie going into high school, Julianna starting to navigate the upper reaches of elementary school (moving out of the shelter of Sue Gravel and into the school at large) and getting Sam educated, whole and healthy – the reality that I’m too tired to think about having another baby.  I’ve got an epileptic dog to worry about.

April Updates

I haven’t been blogging much of late.  No real reason, sometimes I just drift away from blogging and then wander my way back.

Marc is doing well at his new job.  It isn’t new anymore now, he’s been at it since January.  It’s starting to feel normal. He’s not home much at all during the week, but the weekends are sacred.  He gets home Friday night and doesn’t have to work again until Monday morning.   Because his job changed, I changed my job as well.  Before, with Marc working five minutes from home, at a super flexible position, it made sense for me to be able to work three mornings a week.  But once he started commuting to Canton, working for me because almost impossible.  I hated it – so much.  But I have the world’s best boss, and was able to adjust my hours so that now I just work Wednesdays and Saturday mornings.  My mother comes out and stays with Sam on Wednesdays, and Jessie is home on Saturday mornings, while Marc takes Julie to the synagogue.

Jessie is wrapping up her eighth grade year.   Last year was HARD for my girl, not academically, but emotionally, socially.  Last year was hard on everyone, and it’s still surprising to realize the ramifications.  So this year is easier.  She’s happier, laughing more, working hard, more focused and more in control.  She’s so tall, and so gorgeous, and so much more confident and relaxed in who she is and what she wants.  Her career aspirations have shifted too – and I’m glad.  For most of last year, she wanted to be a child life specialist, and work with kids in the hospital when they’re scared.  While there’s no doubt she’d be wonderful at that – because she truly is gifted with children, she’s so much more engaged and interested in her Model UN stuff.  Now she’s talking about studying international law, or political science.

Sam is doing well too.  Homeschooling is definitely a work in progress – we’re learning about what works best for him.  He loves all four main subjects, but it’s a matter of figuring out the best way to present the information so that he’s learning it, retaining it, and still happy to be doing it!  Because last year was so horrific for him, I’ve gone slowly, slowly, about adding new tasks.  We’re doing really well with history (that’s my favorite of all of his subjects) and math. Science, we’ve had to switch a few times before we found a curriculum that works well for him, but the one I started last week seems to click.  English is mostly audio books and reports, we’ve done a bunch of mad libs, parts of speech.  It’s working – I still feel alternately completely overwhelmed and totally in control, depending on the day.  The food thing is getting better too – he’s graduated from a full blown eating disorder to just incredibly picky.  The anxiety.. we’re working on it.  It’s slow, slow progress, but progress nonetheless.

Miss Julianna Ruth is finishing up first grade.  Kicking ass academically – she’s an incredibly proficient reader, and doing really well in math as well.  She’s got a really nice group of friends, and seems so happy and well-adjusted.  She’s still recovering from the accident as well – mainly in terms of understanding that she’s special and important and worthy of attention.  The reality is that for a long time, Sam was the one who monopolized everything, and on a fundamental level, that really impacted how she looks at the world and her place in it.  Julie fell into a pattern of trying to fix everything, to be the kid I don’t worry about, to be the perfect daughter, and it’s been a process to encourage her to be able to stand up for herself, or to allow her wants/needs to be a priority.  We’re working on it, and I think things are getting better.  She seems happier.

This is the time I wanted.  When things were at their worst last year, there was a part of me that kept wondering it would ever get back here.  With no major problems, just life.  Kids all growing, all healthy, all moving towards adulthood.  With Marc and I able to relax and breathe, knowing that we’re doing what we want to do, raising our family and living our lives.  We’re back there again – and while I don’t think I took it for granted before, I know that I appreciate every minute of it now.

 

Saturday night

Saturday night was one of those nights that I’ll look back on, years from now, and get a little weepy because it was just that perfect.

Actually, this whole weekend was kind of perfect.

We’ve always had Shabbat dinners with Lilli and Sarah.  And they’re EVENTS.  I make a big dinner, with chicken and a bunch of sides, and we all sit around the table together.  They’ve become the cornerstone of our week – it’s the one night that Marc is home early enough for dinner, generally the one night that Lill and Sarah are both here.  For the past year, it’s been the one meal that Sam eats with the family.

But this past Friday, the girls weren’t coming.  Lilli had something to do, a weekend thing with USY, and Sarah had competition all weekend.  This doesn’t happen all that often, and usually we compensate for the no girls situation by going out to dinner instead.  In light of the fact that Lilli will be off to college this fall, and Sarah is not as consistent about coming as Lilli is… I wanted to establish Shabbat dinner as special with just us – even if Lilli and Sarah aren’t there.  We want them there, all the time, but I need for it to be okay if they aren’t.

To my surprise… it was.  The table was smaller, but other than that, it felt just like regular Shabbat dinner.  A little quieter, but still lovely.  We had dinner ready on time, everyone sat at the table, and had a really nice dinner.  Then Sam curled up on the couch with the dog, Julie got out her dollhouses and set them up, Marc and Jessie started arguing about the wage gap and paid family leave, and I sat at the end of the table, alternating between talking to the little kids and siding with Marc or Jessie, depending on which one I agreed with at the moment.

Saturday, I went to work, which is not my favorite – because working on Saturday isn’t fun.  But it is a lot better than working during the week, because Jessie stays home with Sam and Julie and Marc go to synagogue, and I got home around 3:00.  I cleaned up the house, we ordered pizza for dinner, and again SAT AROUND THE TABLE AND ATE TOGETHER.   We played this ridiculous board game that only Marc understood, so he played for everyone while we all hung out and laughed together.  It was awesome.  Nobody argued, nobody fought, Sam was actively participating (nobody knew how to play, so his visual issues didn’t factor in at all).