Archive | April 2017

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.