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Jan 09

Notes from a snowy weekend

Friday night, we have Shabbat dinner.  Every Friday.  We almost always have Lilli and Sarah with us, but this Friday, they were with my in-laws.  It’s hard, to try and make Friday special when the girls aren’t here, and I had gift cards from Christmas… so Marc and I took the three kids to Applebees.

Sam’s a mess when it comes to restaurants – and it’s always hit or miss if he’ll be able to find anything he likes or if he’ll panic and need to leave.  We don’t go out to restaurants, really.  In part because it’s cheaper to eat at home, but mostly because he’s really not able to do restaurants.  We took two cars, so if it got ugly, I could just slip out without disrupting everyone.  He was nervous, and tried to back out – but I’ve gotten pretty good at anticipating, reacting with a minimum of fuss, and being as subtle and reassuring as possible.  He got in the car, hesitated about going in, hesitated about going in, and then was a little anxious about waiting for the table.  But thank goodness Applebees has the little video game thing at the table, and he tried (and LOVED) the mozzarella sticks – so Friday night counted as a win.

Saturday, I went into work, Marc brought Julie to the synagogue and Jessie and Sam stayed home.  I got home just as the snow was starting to fall, and Marc got home soon afterwards.  We got close to six inches and snuggled in all afternoon.  We watched movies, knitted and crocheted, played board games, and took naps.  The older kids split off into their bedrooms, and Julie usually hangs out with us, or in her play area in the dining room.  She’s got half the dining room as her own little space, with baby doll beds, dollhouses and doctor kits all carefully arranged.

Sunday morning, it was still icy and Julie was coughing a lot, so we stayed in.  Confession time – I’ve never taken my kids sledding.  I don’t like the cold.  And last year – I felt guilty enough to buy them all sleds… just in time for the mildest winter in forever.  So we didn’t go last year – and then on Sunday, nobody much wanted to head out.  Jessie went to the synagogue for a USY thing, and Marc went grocery shopping and took Sam to Toys R Us to spend a Christmas gift card – but other than that, it was another quiet, snuggly sort of day.

 

Jan 05

Resolutions for the New Year

I feel like I’m starting over.  Or starting back.  My life is no longer in trauma.  This is the anniversary of the time when things started to get really dark for Sam last year.  It was the beginning of January that he stopped going to school.  And while I’ve got little desire to look back, I do know that my body is aware of the anniversary.  I feel the tension, the awareness of what I was doing, what he was doing, at this time last year.

All that being said – we’re back to a place that I recognize.  Where the kids are all well (we define “well” a little differently now for Sam), the husband is good, my life is mine again.  I wake up happy.  So, in light of moving on, of starting to embrace the life I’ve built… here are some New Year’s Resolutions for 2017.

1 – Get back to the things that matter.  I used to be more involved with volunteering, at the schools, at the synagogue.   I pulled away from all of it last year, and I don’t regret it.  But I also think that (to quote my favorite fictional President Jeb Bartlett) decisions are made by those who show up.  So I’m showing up.  I went to my first PTG meeting in a long time last night, and may have possibly agreed to co-chair the spring dance, and represent the school at monthly city-wide meetings.  I’m working on setting reasonable limits, like suggesting that we assemble a sub-committee to plan to dance, and get a list of parents to rotate attending meetings.  But I’m getting involved again, and I’m happy about it.

2 – Step back from the immediacy of parenting, and try and think about what I’ll wish I had done.  Does that make sense?  Putting Julie to bed is one example.  I snuggle her to bed, we curl up together, watch something on netflix and then I lay next to her and read facebook while she goes to sleep.  And sometimes – it takes forever and I get impatient.  I’m trying to remember that it won’t last forever.  Not only won’t it last forever – I have no idea how long I’ll have with her like this.  Things change, in an instant, and I won’t get this time back again.  I rub her back and tell her how much I love her, and stories about what she was like when she was little.  I kiss her hair and squeeze her a little extra, because life is too damn short not to do it when you can.

3 – Remember, always, that educating Sam is a long and winding road.  That he’s a brilliant child, and one of my jobs is to make sure that he’s challenged and engaged, and that he knows how to learn.  We’re not on anyone else’s schedule, and he’s been thru an enormous amount of trauma in the last year.  What I need to do now is focus on repairing and rebuilding his desire to learn, his confidence in himself, and feed that insatiable appetite he has for new information.

4 – Jessie’s entering into some of the most exciting years of her life.  Decisions she makes over the next four years will impact almost everything about her future.  She’s laying the groundwork now for the life she wants, and I want to give her all the support and structure and freedom, as well as limits, to do that.  She’s so thoughtful about it, so aware of what she wants and who she is and where she wants to go.  I need to nurture that, to remember to get out of her way when that’s what’s right, and when to step in and wrestle control back when she needs that.  Raising Jessie will always be somewhat scary and new to me, I’ve never done this before.  But I’m in awe of who she is, of what she’s accomplished and the way she walks in the world, and I want to really pay attention to that.

5 – Walk that little dog more.  Lucky is lazy – there’s no denying it.  He’d always rather curl up in the sunshine and nap, but he needs more.  Sam needs more too – so my goal is to walk both of them a lot more.  Once it’s warmer, though – because nobody wins when I have to be outside in the cold.

6 – Pay attention to Marc.  He gets lost sometimes – because the other needs are so immediate.  But it’s too easy sometimes to live these parallel lives, where he does his thing, and I do mine, and sometimes we have coffee in the mornings together.  I don’t want to look back at the end of twenty four years of raising children together (the birth of Jessie and Julie’s 18th birthday) and see a stranger.  We’re going on fifteen years of marriage (!!!) this year, and he’s still the best and brightest part of my life.  I don’t always take the time to think about that.

 

Dec 31

No 2016 Retrospective

Because really, the thought of going back through the year and picking out my favorite blog posts from each month is too much.  This was a hard year.  It’s still hard.  I can’t look back.  There’s too much pain there, and I can’t revisit it.

There were major bright spots.  We got Lucky, and that’s been an unqualified positive.   This dog is the sweetest, most passive and laid back, cuddliest little creature I’ve ever seen.  Getting a dog was such a brilliant idea, and I’m forever grateful for having him, and what’s he’s meant for all three of my kids.  And for me – I love this dog.

Each one of my kids grew up a lot this year.  Jessie grew up, a lot.  She assumed more responsibility than I ever wanted for her, and is the most empathetic, loving and aware teenager I know.  She’s grown into this amazing, funny, smart person – and it’s not an exaggeration to say that she’s one of my closest allies.  Julianna finished up kindergarten, and bopped into first grade like it was nothing, and has thrived, absolutely thrived in that environment. She lost her brother, on a real level, this year, and is slowly, slowly getting him back.  She’s learned more than I ever wanted to about how to support someone you love when their world is crumbling, and I’m so proud of her.

My Sammy – I don’t have words to describe what he’s been thru this year.  He’s lost almost everything, and been thru unimaginable trauma and fear.  Even now, seven months later, his life is incredibly different from it was before.  He’s staggered me, over and over again, with how strong and brave and resilient he is.  He handles it – whatever it is.  Whether it’s the loss of vision, not being able to see the board games, or the television or the computer games he used to love, the loss of his taste buds, not being able to just grab some cereal or enjoy Halloween candy or his chocolate advent calendar my mother gets every year, or the very real loss of the ability to walk thru the doors of his school – he’s found a way to take the incredibly difficult and make it okay.

Marc has struggled beside me all year long.  He’s been my other half – I’d maybe have been able to get thru it without him, but I can’t imagine how.  He’s what made it possible for me to do what I did this year, to raise these kids, to get them through the most challenging year of their lives… he never wavered, he was never not exactly what I needed at any point.  I’ve never not loved him, I’ve never not wanted him at my side – but this year – this was the year when I knew beyond any doubt that our marriage was the foundation for everything.  Everything we do is possible because of that.

So no retrospective this year.  I won’t look back, but just forward.  2016 is a year I’ll never forget, and one that I’m incredibly happy to say is over.  The rewards were huge, but the price was way, way too high.

Dec 22

Mornings are not my thing

I know this.  I wake up bleary eyed and vaguely incoherent.  I can stagger to the coffee pot, turn it on, and then go to the bathroom, brush my teeth, switch over the laundry and throw in a new load.  By that time, the coffee is usually done, so I can pour the first cup and start my day.

Marc didn’t make the coffee last night.

Faced with having to make the coffee, I stepped up.  I grabbed that fragile, fragile glass carafe, and promptly slammed it into the faucet in a misguided attempt to fill it.  It cracked a little, but just a little, so I kept going. Filled it up, and walked it across the kitchen to pour it into the coffee maker, at which point it started leaking EVERYWHERE, spilling cold water all over the counter, my bare feet, the floor, etc.

It hasn’t been a good morning.

But since the coffee maker itself was still functional, and I REALLY wanted that coffee, I make it anyway.  I used a saucepan.

 

Dec 14

Observations from December

I’ve declared the December Dilemma over.  It’s simply not something I participate in anymore.  I don’t think I could have done this earlier, it was a long process to get me to this point.  I don’t regret all the angst, because I had to get thru it, but I’m much more relaxed and peaceful about it this year.

This is the last year that I’ll be driving my girls together to school.  I drop Jessie at the bus stop every morning on the way to drop Julie at elementary school.  But next year, my baby starts high school, and will be on a completely different schedule in the mornings.  I can’t quite grasp that concept – high school… but hopefully, by the time September rolls around, I’ll be ready.

We’re still in the processs of deschooling/working our way into homeschooling with Sam.  I hit math and history most days, but we’re going to step it up in the new year.  He’s doing a TON of reading (or listening, as audio books are still his main source of reading).  He’s learning, and happy – and I’m still worried about him on about a hundred different levels, but we’re getting used to the new normal.  He’s legally blind.  And while it doesn’t impact him in every way – he’s still video game obsessed, still watches too much youtube, can walk the dog and see well enough to pretend that he’s not – it does impact him in a thousand little ways.  It obviously impacts his education, his ability to read and write, his ability to hang out with us and watch movies or play games.  Everything is different, in so many ways – but in so many other ways, he’s still my Sammy, the same goofy, sweet little guy he always has been.

Julianna is not a little girl any more.  I think sometimes it must be very tough to be the little one in this family.  Especially because the older two are such intense personalities.   She’s got to figure out her identity – in a family where there’s already a dramatic intense girly girl and a goofy intense little guy.  She fights with Jessie all the live long day – and Jessie fights right back at her.  They squabble all the time, and it makes me insane.   I’ve tried to explain to Jessie that Julie is struggling to find her identity, that she’s outgrowing the little kid label and she’s trying to assert her own identity, and Jessie is her biggest competition right now.

Marc is working a zillion hours a week, and frantically trying to cram in time at the synagogue, time with Sam and D&D, time at the gym, and time with the girls as well.   He’s happy, I think, overall, but I think he’s mostly tired.

I’m happy.  Tired too – because working, ferrying the kids, cleaning, homeschooling and doing the parenting thing is exhausting and I never actually feel like I’ve gotten everything done.  But overall, I’m happy.   The kids are all thriving, and healthy.  I’m not sure I’ll ever adjust to Sam’s accident or be okay with the fact that my son is legally blind, but I never lose sight of the fact that he could have lost so much more.  He could have died.  He could have cognitive impairments, or personality changes, or been paralyzed.  None of those things happened.  In the end, that’s what matters.

So life is a little more complicated than it was before, and we’ve got a little more sadness and challenge, but we’re all still standing.

Nov 29

Confusion

And frustration.

That’s where I am right now.  I’m trying to wade thru the paperwork and process of getting Sam the services he needs while still homeschooling – and it’s a hot mess.  Nobody knows who I need to talk to, nobody wants to say that they’ll step up and help me figure it out.  I’ve got a list of people to talk to, all of whom have told me to talk to someone else. Yesterday alone, I spoke with six different people from the school system, all of them agreed that I needed help, and sincerely believed that I should be talking to someone else.  That someone else would agree that wow, I did need some assistance, but here’s another contact I should reach out to – said contact then agreed that the best person to talk to would be the one I started off with.

I’m baffled, and gearing up to just start calling and writing and bugging people in order to get him what he needs.  The problem is that I don’t entirely know WHAT I need… which makes it tougher.  And by tougher, I mean – baffling, frustrating and in the meantime, I’ve got a kid who’s education is reduced to the audiobooks shelves at the library and me reading thru Life of Fred with him.

In other news… girls are good.  Julie just got her report card, and she’s kicking ass in all subjects, and a joy overall.  Same thing with Jessie – all A’s, except for math – and even that is light years better than it was last year.  They’re both thriving in school, and while I still have it in the back of my head to homeschool them, especially Julie, neither of them have ever indicated that they’d like that.  My plan, right now, is to have Jessie continue up into high school and go the traditional route, and with Julie – I’m praying that she gets into Goddard in the sixth grade.  If she runs into problems… I love her teacher.  I’m confident that for right now, public school is working for Julie and she’s happy there.  If that changes – I’m also confident that homeschooling would be wonderful for her.

Nov 22

Sunrise

I woke up this morning a little before five.  In my dream, Jessie slammed a car into another one, and totalled both of them.  Nobody was hurt, in my dream, but she had done it accidentally because she was mad, and I was busy taking care of Julie and couldn’t stop her.  Then Marc was snoring, and in my dream, it sounded like she was actually awake and screaming and crying, so I woke up, ready to spring into action.

Turns out it was just a dream, she was sound asleep, but I was already up.

The sunrise is beautiful, and my toes are frozen.  I took a shower and even used the blow dryer on my hair, but neglected to get socks.  I have dishes to do, and laundry to fold and a poem for eighth grade English that I have to print for my girl.  Today’s a blur of school conferences, doctor’s appointments for Sam and Julie, and kid picks up all over town.

Sam ate cereal last night.  For the first time.

Jessie’s class voted for superlatives yesterday for the year book.  She won six of them.  She’ll only get credit for one in the year book (because each kid can only get one), and she got the biggest majority for Best Dressed, so that’s what it’ll be.  But she actually won Most Presidential, Best Hair (and for those who remember the Great Hair Crisis of 2015 – you’ll understand my shock and joy at this one), Most Likely to End Up on the News, Most Likely to Rule the World and (wait for it…) Best Sneeze.

Julianna Ruth is very busy taking care of Anna these days, she’s got an American Girl doll and she’s the beloved one.  I’m looking at the dining room and trying to decide if I should clean the room, or just leave the bedroom that she’s built out of dollhouses and Jordyn’s old suitcase.  She spends fifteen or twenty minutes singing Anna to sleep every night, and gets up in the middle of our snuggling to go check on her because Anna has trouble sleeping.

 

 

Nov 22

Thanksgiving

We’re prepping a little differently this year.  In the past, we’ve split up on Thanksgiving.   Marc stays home with Sam and sometimes Julie, and Jessie and I spend Wednesday night and most of Thursday at my mother’s house.  And in years past, that’s been okay.  Sometimes Marc, Sam and Julie would come down to my mothers and join us for dinner, some years they’ve stayed home and made a big Thanksgiving dinner here – which is how we started doing second dinner.

The High Holidays this year were brutal, at least Rosh Hashana was.  I missed my son.  Separating out on Thanksgiving used to be no big deal.  It was even a lovely tradition, because I love having Jessie and my mother together, prepping Thanksgiving every year.   It was easy to take it for granted, we were always together, so if we, as a family, separated out on one holiday, it was no big deal.  And until I went through the holidays in September with him at home, and us out celebrating as a family without him… it wasn’t a big deal.  Now it is.  I want him with me on the holidays.  I don’t like not having all of my kids with me when I do family things.

This year, I’m working on Wednesday morning.  I’m going to come home and pick up at least the girls, maybe Sam, if I can talk him into it.  We’ll go down to my  mother’s house, and bake, bake, bake.  Marc will come home, pick up Julie (maybe Sam if I can get him there) and bring them home.  Jessie and I will sleep over and get up at four o’clock to prepare the turkey and make the stuffing, eat Danish and gossip with my mother and aunts and cousins.  At noontime, we’ll pack up and head home, where Marc will have prepared a lovely Thanksgiving dinner for us, and Annie, Richard and Glennys, and Joy, Skip, Julia and Harrison.

In other news… Jessie won Best Delegate yesterday at her Model UN conference.

 

 

Nov 07

I’ve never had a case like this

That’s the theme for Sam, apparently.  And honestly, hearing that about your child is not really something that bodes well for me.

Nine year old boys don’t get pseudo-tumors from a bike accident.  Psuedo tumors don’t NOT get better when on Diamox.  Diamox doesn’t impact taste buds to the point where they just don’t work any more.  And now – kids who are visually impaired don’t get homeschooled.

I talked to the case worker from the MA Commission for the Blind today, and it wasn’t encouraging.  I wasn’t coming at it from a good place, having just re-lived the accident and history with the neuro-opthamologist from Children’s that we’re seeing on Thursday.  I was already a little fragile and emotional, and then had to re-do the whole thing again with the social worker.  Only to hear him say “I’ve never had another case like this.”

He’s the only social worker for children in Central MA for the Commission for the Blind.  And he’s got kids who are on home/hospital, unable to attend school, but still receiving services through the school system.  Still getting an education thru the school system.  There are simply no kids who are homeschooled entirely, while visually impaired.

All the technology is paid for by the school system.  Because he’s not on an IEP, and not receiving services through the school system, there’s no mechanism in place for him to receive the technology. I’m legally allowed to homeschool him, and he’s legally entitled to services though the school system – but we don’t know how to mesh those two things.

There are steps and processes, and plans going forward.  I have to brave the lion, and contact the school system.  My social worker, who’s lovely, is going to do some research too.  We’ll figure it out.  I’m just tired of fighting.  I need someone to look at my boy – my sweet, sweet boy, who struggles so hard and has lost so much, and just HELP him.  Give him what he needs without making him go through all of this.

Nov 02

Don’t discount what you’ve been through

I had a session yesterday with Sam’s therapist, just a catch-up sort of thing – because in so many ways, he’s improving, but there are still issues that we grapple with.  The bigger issues now seem to be focused on dealing with negativity – he’s really uncomfortable with sitting with and handling negative emotions.  He looks to Marc and I to help him, to make it okay.

The reality is that we do make it okay.  When we can.  And there are a lot of ways in which we subtly sort of rearrange things to accommodate the anxiety.  Planning parties to happen at home, homeschooling, planning playdates to happen here.  There’s lots of reasons for it – and they’re all logical and make sense.  He’s still got all the dietary issues, and getting him fed is easier at home.  He still can’t see – or at least we don’t know what he can see and what he can’t – and all of that is easier for him at home.

I worry about how much accommodating we do – by lowering our expectations, he (and we) end up accepting so much less for him. He misses out – on playing with his friends, on spending time doing things that other kids his age do without hesitation.  When I asked the therapist about that – she pointed out that it’s much more about work that Marc and I have to do – we have to be willing to watch him struggle and suffer.  To be anxious and scared and work thru it.  She said to me (and I’m paraphrasing) “don’t discount what you’ve been through over the past year – it’s not just about whether or not he can handle this, it’s about whether or not you can watch him do it.  To have to see your child suffer and not be able to fix it – you had to do so much of that.  Can you handle more of it?  Can you intentionally, at this point, put him in the position to feel those negative emotions and let him deal with it?”

The reality is that I can’t.  Not yet.  There’s so much negativity that he had to deal with, so many things that I couldn’t fix or couldn’t help – at this stage, I need to be able to do this slowly.  I have to be able to push him slowly, slowly, and give myself space to be okay with it.  The reality is that no parent likes to watch their child hurt or be afraid, and we, Sam, Marc and I, have done so much of that in the past year.  We need space and time.  Time to not be scared, time to be able to heal.

I wish it didn’t take so long.  I wish I could wave a magic wand and be over all the trauma, that he could be over all the trauma.  But the truth is that it’s going to take more time.

 

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