Deschooling, stealth schooling, unschooling, oh my…

I’m a homeschooler.  So to speak.  I’m homeschooling in theory – in reality, I’m reading Harry Potter and the Prisoner of Azkaban out loud and strongly suggesting that he watch documentaries.

We’re in a weird place right now.  Not just with his physical and emotional recovery, but also with his academic recovery.

He’s physically recovering, a little bit, slowly, slowly.  There is progress, but he’s still seriously compromised in a lot of ways.  Physical activity is non-existent, his appetite is totally shot, he still gets headaches and can’t see at all in the dark.  His eyes are tracking better, I don’t think he’s technically legally blind any more.  But I don’t think he can see well enough to read anything serious, and he gets pretty intense headaches when he concentrates for a long time.

Emotionally, he’s hanging in.  The anxiety isn’t overwhelming, but it’s only because we don’t do anything.  He can’t do anything, so it’s not like I’m asking him to go anywhere or do anything that would incite the anxiety.  Unless it’s going to the doctor’s – in which case the anxiety goes thru the damn roof.   His whole idea of safety is wrapped up in me – he gets really tense when I’m not home.   The few times I’ve left the house (other than to run and do pick up and drop off for the girls), he calls me, crying and begging me to come home.  The idea of getting a sitter to stay with him other than one of his sisters freaks him out altogether.

And academically – I’ve got nothing.  He can’t physically do anything and has absolutely no desire to do anything academic.  Watching “educational” videos cause meltdowns (God help Julianna who LOVES the schoolhouse rock DVDs I got for him).  I read out loud to him.  From a book he’s read before (Marc read it to him years ago).  He’ll watch news with him, documentaries and science shows.

So I’m researching – there’s little I like more than a little research.  Stealth schooling is my new favorite term – I trick him into learning.  A little bit.   I hope that we’re making the right decisions with him, I pray that by decreasing the pressure, by stepping back, by giving him space to heal, space to thrive, he’ll come into it on his own.  I deflect the questions, I smile sadly when people tell me that he’s falling so far behind.  I know he is – I’m just hoping that we can stop looking at it as he’s falling behind, and more like he’s just where he is, and go from there.  If I’m homeschooling, maybe I don’t need to worry about grade level.  He’s learning, he’s just not learning in a traditional manner right now.

My hope, please God, my hope is that he’ll continue to heal physically so that we can work on everything else.  We can work on the anxiety – maybe the anxiety won’t be anywhere near as intense if we aren’t doing public school.  I wouldn’t have described him as an anxious kid prior to sending him to school.  Maybe pulling him out of school will be the best thing we’ve ever done for him.  Maybe this is will give him the opportunity to thrive, to grow and learn and be exactly who he wants to be.

Slight improvements

The improvements are there – they are.  Given where we were a month ago, he’s measurably better.  But day to day, it’s a lot tougher to track.

His eyes are tracking substantially better.  I’m staring closely at him all the time, and I think those are all the way better.  His vision is improving, slowly, slowly, but I think it’s improving.  He seems to be moving easier, sometimes at least.

He’s still in a lot of pain, he’s still got a lot of headaches and arm pain, and his vision is still nowhere near where it was.   A problem that’s recently cropped up is that his sense of taste is all over the place.  Things he used to like suddenly taste terrible, and he’s not willing to try new things to replace them.  I don’t know if its that the sense of taste has changed or just disappeared.  According to my good friends at google, this happens in 25-30% of concussion patients, and sometimes it comes back and sometimes it doesn’t.

He’s still got all the anxiety issues from before, probably worse.  The problem is that now I don’t know how much of it is anxiety and how much of it is an actually physical problem.  Does he not want to go to a party because his head hurts when he moves too fast, and his vision is so compromised?  Do I push him to do it anyway?  If it was just anxiety, I would push.  Even if it was just physical, I think I’d push a little – but the combination of the two, the anxiety and physical ailments (all of which are invisible – it’s not like I can stick his little head into an xray and see if the break has healed the way I could if he broke his ankle) – it makes me really hesitant.  I force doctor’s appointments, I force play dates here at the house – but going to the bar mitzvah next week for a friend’s daughter?  I’ll let him skip that.

In other news – this morning went substantially better than yesterday.  Okay, it did start at 3:00 am, when Julie climbed into our bed, and Sam started calling us from the living room (he fell asleep on the couch).  His head hurt and he couldn’t get up on his own.  I took Julie, Marc got up and get medicine for the Boy and got him into our bed.  Sam was totally up for the day, and so, unfortunately, was I.  But once the girls got up, they were pleasant and sweet, and the morning went along easily enough.

So we’re making progress, and the bonus to me working from home for only a few hours a day is that the mid-morning nap won’t be a problem.

God bless the 3:00 cup of coffee

My name is Melissa, and I’m addicted to coffee.

I’ve come to grips with it, and am no longer ashamed.  I don’t smoke, have never tried drugs, drink so rarely that it’s more accurate to say that I don’t drink.  But I have a raging coffee addiction and I’m proud.  I’m even perpetuating it into the next generation, as Jessica has started getting herself a cup every morning as well.  I’ve been able to limit it to just mornings with her – even I have my limits.

Ever since Sam got sick, I’ve started with the mid-afternoon cup of coffee.  Sometimes two.  The morning coffee – that’s a given.  I have two cups before I head out the door to drop off the girls, and then I’m good.  But then Sam got sick, and I wasn’t sleeping at night, the mid-afternoon coffee became essential.  It didn’t take long before the occasional cup of coffee because a daily thing, and then an oh-my-God-if-I-don’t-have-that-coffee-I’m-going-to-kill-one-of-my-kids.

Now my day revolves around the coffee.  I start my day with it, and I have a couple of cups every afternoon to keep me going.  I usually hold off until after the girls get out of school, but then, oh, please, yes, the glory of a hot cup of coffee with the perfect ratio of sugar:cream:coffee.  And then suddenly, the rest of the afternoon seems more… manageable.  I can handle the homework battles, the dinner dilemma, the bathing/teeth brushing/please-God-won’t-you-just-fall-asleep-already brawl that Julianna insists on every night.

The drama of it all

Having a 13 year old is no joke.  Having any kid of any age isn’t easy, but there’s a special little challenge that goes along with having a 13 year old daughter.  She’s brave and brilliant, gorgeous and funny and lovely.  Also bitingly sarcastic, moody as hell, and not at all shy about expressing it.  Jessie is all about doing it 110% – whether it’s good or bad, she throws her whole self into whatever she’s feeling and it spills out all over everyone.

Mornings are hard.  They just are.  Some mornings are better than others, most mornings are better than others.  I love good mornings.  I genuinely love driving my girls to school, talking about what we’re doing after school, debating different dinner options, and kissing them goodbye before they bop out the door.

Today was not a morning I’d like to repeat.  Similar to last Thursday, it was a morning when we just battled the entire drive.  I’ve adopted a new technique, I just pull over and refuse to drive until she can speak to me kindly.  Depending on how furious I am, I’ll pull over gently or I’ll slam on the brakes.  This morning, I slammed on the brakes.  Given that part of what she was furious about was that she wasn’t able to buckle herself in easily (mainly because she had chosen to get into the car with her backpack on, her books and glasses and flutes and binders on her lap), she went flying forward and slammed her flute into her chest.

Not a good morning.

She was okay – furious all over again, and sore because her ribs hurt.  Upset about her life, because it’s hard right now.  But life is always going to be a little hard sometimes, and super hard sometimes too.  You have to learn to control your emotions, and not take it out on others, especially your mother.

We made up by the time we got to the bus stop, she kissed me good bye and told me she loved me.  But now I’ll spend all day worrying about her, and thinking about her poor little ribs with the flute jammed into it.

Hopefully tomorrow will be better.

Anger

I’m angry.  I’m just so… mad.  It’s getting a little better, I guess, but I’ve spent most of the past week absolutely furious.

I keep telling myself that it’s normal, it’s only to be expected.  Anger is okay – it’s just an emotion I have to wait out.  The past two months have been hellish, and while things are so much better, they are a long, long way from the way they were.

Sam’s legally blind in one eye, and the other eye is only 20/60.  He’s got soft tissue damage on one side, his shoulder is so tight and knotted.  He’s nine, and not the most enthusiastic of patients on a good day, which means that putting any sort of ointment or cream on his shoulder and arm is a battle royale.  Taking him into the doctor – it’s a fight, a brawl that involves me forcing him to get dressed, dragging him out of the car, and shoving him in, while he’s begging and pleading with me to please, please just let him stay home.  And even when I get him into the doctor’s office (a two hour trip, one way, involving a wheel chair and bribery the whole way),  he’s uncooperative and terrified the whole time.

We’re financially struggling in ways that I thought we had moved beyond, because when all of this happened, I had to drop my hours down to only 10 hours a week.  Marc is working a zillion hours a week, and I’m frustrated and so, so mad.  Just all the time.  I’m furious at what my life is like, I’m furious at what my son is going through, every day.  I miss my old life, with three healthy kids, with a schedule that made sense.  I miss my son going to school, laughing with his friends and learning.  Now he’s sitting at home, playing minecraft to distract him from the pain, and wondering what happened to his life.

He is getting better.  He is.  If I look at it from week to week, instead of from day to day, it’s easier.  He went out to dinner last night with us.  He had Harrison over for a playdate.  Three weeks ago, that was impossible.  Two weeks ago, one of those events would have worn him out to the extent that the next day would be spent in bed.  He is getting better.  He just is.  But it’s still so damn hard.  I don’t know how  long any of it will last, what will full recovery look like?  When will this be over?  Can he go to school in September?  Can he go next September?   Should he go?  Because even if I get past all the physical issues, there were still huge and debilitating emotional problems with school.

If it was just one thing, just the anxiety, I could do it.  If it was just the physical concerns, I could do it.  The combination of the two, the anxiety combined with the vision and the pain – knowing where to draw that line – when to force him to do stuff, when to make allowances, when to give him a pass – I never know.  I try and balance it – I try to guess, to walk the line between forcing him to do things he doesn’t want to do, and understanding when he’s just been forced too far and needs a break.   I never know, not for sure – am I forcing him too much?  Am I letting him get away with more than he should?  Are my expectations too high, not high enough?  What is he capable of, what should I let go?

And if I don’t know the answers – how much am I letting him down?  The stakes are so high – this is his life, and I don’t know what’s right and what’s wrong.  Am I listening to the right doctors?  Should I have believed the one who thought we should admit him and do another invasive round of testing, that there’s a small window of time to reverse this damage – or was it right to listen to her supervisor who thinks that we just need to stay the course, and wait it out.    Did I listen to the doctor who said what I wanted to hear, or did I listen to the doctor who was right?  And if I’m wrong – did I just consign my son to a lifetime of vision problems?  Nobody knows for sure about any of this – does he have a concussion, is letting him watch a kindle or play minecraft doing more damage?  Or is it a viable pain management technique?

He was just riding his bike.

He is getting better.  He is.  He’s sleeping fine, and waking up on his own.  He’s down to a few doses of motrin a day, and we’re working on getting the stomach pain under control.  He went to Target with me on Thursday, and that was huge.  He had people over all day yesterday, and soldiered through the whole day.  He played with his friend, and was able to go out to dinner with his family last night.  He even slept alone last night, which is a major accomplishment.

He is getting better, and I need to stop being so mad.  We’re getting through this.  It’s hard, but it’s not impossible.  He’s going to live – and there are a lot of doctors who think he’s going to make a full recovery.  We just have to stay the course (as long as that doctor was the one that was right…).  We just have to keep going, keep pushing, keep praying, keep hoping that he continues to improve.

Julianna Ruth – at six years old

I started to type that she was suddenly a big kid – but I haven’t gotten there yet.  She’s still my baby, my tiny one, my little love bug, and at some point, I imagine that she’ll start to chafe against the fact that I always see her with her little baby face superimposed over her six year old one.

At six years old, she’s scary smart, reading on her own and still able to entertain herself for hours with her imagination.  She’s the one we call the rabbi, the one who doesn’t chafe or rage against keeping kosher for Passover, the one who loves going to religious school.  She’s the reader, the writer, the dancer and the gross girl.  She’s the one who laughs at Daddy’s jokes, the one who asks for Papa to take her to the baseball game.  The one who lights up when my mom comes over, the one who loves to walk the dog with me.

She’s been my angel from the beginning, the brutal pregnancy that turned into the easiest, loveliest birth and blissful babyhood.  Other than the nursing battles the first few months (which she more than managed to make up for by nursing until well past her fourth birthday).  She walked late, potty trained early, and hasn’t stopped talking since she started.  She’s sarcastic and funny, so incredibly sweet, and it’s staggering to me that she’s only six years old.  That’s she’s already six years old.

My beautiful girl, my little baby, my mini-me, and Daddy’s love bug.  I love you Julianna Ruth – happy, happy birthday to one of best and brightest things in my world.

He can’t see

Playing Uno is hard, because he has trouble seeing the difference between the blue and green cards.  He can’t play Wii Sports well, because he can’t see the baseball in time to swing.  Forget reading – he can’t play with legos or build his model cars.

It’s not that he can’t see at all.  He can see.  He can sort of see.

He’s mad now, and miserable and raging.  Then he puts it aside, and handles it.  He stops raging, he listens to me when I tell him that I know this is horribly, horribly unfair.  That he has every right to be mad and furious and scared and frustrated.  But that he’ll get thru it, that his brain needs to heal, that the doctors are optimistic that the nerves will regenerate, and that the vision will come back.  That sometimes, in life, horrible, horrible things will happen, and it’s not fair and it’s not right.  But that the only thing that matters is how we handle it, that he’ll survive this.  That he’s healthy, and sitting beside me on the couch, and that he just has to be patient.

He’s learning lessons I don’t want him to learn.  He’s growing up faster than I want, and dealing with realities that I don’t want my little boy to have to accept.  Because the truth is that this is miserably unfair.  He didn’t deserve it and all he can do is learn how to handle it with grace.  To fight to get it back (although I’m entirely unclear as to how fighting is going to get the optic nerves to regenerate).

This isn’t the childhood I wanted for him.  Doctors visits and taking more medication than I’ve ever had to face before.  Play dates broken up by the need to rest, being afraid to go anywhere or do anything because you don’t know when the pain is going to get worse and you’ll need to lay down.

I tell myself that it’s a good sign.  He’s feeling better now, because for the past month or so, he was feeling so wretched that he didn’t even care that his vision was negatively impacted.  The fact that his body wants to do things is a good sign.  It means that the medication is working, the pressure is going down, and then nerves will be able to regenerate.  His appetite is slowly coming back – slowly, slowly.  He’s asking for food now occasionally.  Doesn’t eat much of it, but at least asking.  He’s not as reliant on tylenol or motrin.

 

April Vacation 2016

I like April vacation – but I sense that this one is not one that I’m going to want to repeat.

My Jessie is off to Florida – a reality that makes me squirm a little bit when I think about it.  She’s so much farther away than she’s ever been, and I won’t see her until Thursday.  I know it’s a fantastic opportunity for her, she’s off with her best friend, and having so much fun – but I miss her like I’d miss my arm.

My Sam is still a mess.  I forced him into a bath yesterday, it took a half hour of yelling and him begging me before I got him in there – and then he promptly fell asleep (for the night) at around 4:00 yesterday afternoon.  He woke up this morning around five thirty and started throwing up.  He threw up two or three times, and then I gave him some zofran (because that’s how I roll now, prescription drugs for vomiting), and got him to take his meds.  He’s better now, at least a little bit.  He’s holding down ginger ale and white rice, and playing on his kindle.  Asked for pain meds, and I was able to get him to take the diamox.

Julianna is out with my mother for the day – enjoying Concord and Patriot’s Day.  And I’m incredibly grateful – on a couple of different levels.  I love that Julie loves going out with Grammy, and I love that that my mom is so happy to take her and make sure that Julie is having a fun vacation.  Because sitting her, cleaning vomit and watching Sam play on the kindle isn’t any way to spend such a gorgeous day.  But I’m jealous – because I wanted to be able to go out and do stuff today too.

I miss my boy.  My healthy boy.  I want to be able to get up, throw him some clothes and head out for the day.  Even though if he was healthy, I’d be heading out for a day at work.  But I want him better, so bad.

He is getting better.  Slowly, slowly.  But his spirits are getting better, and he’s not as reliant on the motrin/tylenol cocktail he’s been on for the past month.  He’s still unsteady on his feet, and he still can’t really see that well.  But we’re making progress.  I think.  We aren’t going backwards, at least.  Although all it takes is one vomiting episode to put me right back there – worrying about every ache, wondering if it’s a resurgence of the pseudo tumor, and will I end up back at the hospital.

New Normal

He’s been asleep for fifteen hours.

He’s still breathing, I know this because he fell asleep last night while I was putting Julianna to bed.  On the couch.  So I can watch him sleep while I work in the same room.  He last had pain meds around six thirty last night, so I’m trying to be encouraged that he’s going for so long without waking up in pain.  He was awake for the bulk of the day yesterday, and I thought we were making progress.  I thought maybe today we’d go to PetCo, or Walmart together.  Maybe walk the dog.

Instead he’s sleeping.

This is going to take longer than I thought.  I know that.  What I don’t know is why I’m so consistently surprised at how long it’s taking.   At some point, it must sink in.  At some point, it must start to become part of my thought process.  Marc is there already, he hesitates before planning anything, I’m still surprised each time it dawns on me that the plans I thought we could make have to be adjusted.  For example, the trip to Walmart, while not what I would have thought of as a highlight, is probably not going to happen.  It has to – but when??  I could go this afternoon, I guess.  He could come, in theory, but I know the likelihood of that happening is incredibly small.  I could leave Jessica here to watch him, and wouldn’t have hesitated a few weeks ago, but now I probably won’t.  Maybe I’ll go late tonight, is the pharmacy open late?  Marc is working late tonight, so that he can stay home tomorrow morning.  Julianna has a thing at school, a performance at the Volunteer Breakfast that I’m going to watch.  Maybe I could go after that.

It’s the little things, the every day run-of-the-mill sort of errands and tasks that are just bafflingly difficult.  Going to Walmart – it shouldn’t be a THING.  But it is.

In other news – I’m sending my baby girl to Florida.  By herself.  Well, with Glennys, but it feels like she’s going by herself, because Glennys is a year older.  It’s a fantastic opportunity for both girls – to go visit Glenny’s grandfather and bop around Ft. Lauderdale, hang out at the pool, shop and talk and read and rejuvenate.  If there was ever a kid who deserved a break, it would be my Jessie – but I’m still slightly terrified.  She’s only ever been away from me for this long (four nights) once before, and she was in Maine (within driving distance) with my mother and sister.  This will be three hours away, by plane, with a beloved family friend’s dad.

My Julie – oh, my sweet, sweet Julie.  She’s taken to spelling everything now – I’ve lost track of how many times she’s said I-L-O-V-E-Y-O-U-M-O-M to me in the past 72 hours. She’s not exhibiting any other signs of distress, she’s still eating well, sleeping easily and soundly and doing well in school.  But every other sentence out of her mouth is ” I-L-O-V-E-Y-O-U-M-O-M.”  I keep spelling it back at her, and hope that it’s enough.  I try and cram in one-on-one time with her, dragging her out with me to walk the dog or down to the store to grab juice (Shaw’s is right at the end of the street, significantly less daunting than a trip to Walmart – my holy grail).

Marc and I are hanging in – literally.  By a thread sometimes, but we’re hanging in.  The wonder of it is that we’re still a unit, you’d think something like this, with all the stress and the worry and the fear and the pressure – I’d imagine that it would take such a toll on our relationship.  And maybe it is, I’m just not seeing it.   But he’s my best friend, and my first call.  We’re trying hard to be gentle with each other, to remember that we’re both struggling so hard with all of this.   Our son is recovering from a devastating injury, with ramifications that ripple out from that.  It’s hard on everyone – but we’re still here.  We’re going to get through this – our boy will be okay.  We’ll be okay.

 

Nine is hard

I think he’s at the precise WRONG age for all of this.  Too old to be popped up on my hip while I have the conversations with his doctors, too old to be soothed easily with a cuddle and a kiss.  Just old enough to know that if he kicks and screams and rages, he might get out of having to talk to the doctor.  Just old enough to know that crying won’t really get him out of it, that he’s helpless in the face of illness and pain, in the end he’ll end up with the spinal tap, the IV, the eye test.  Not old enough to know, not really, why we have to do this.   Old enough to be afraid of what’s happening, to not know why, and to not understand what happened to his life.

Nine is the wrong age for this.

Every age is the wrong age for this – I know that.  There’s never a good age for your child to ask for a wheelchair because he can’t see well enough to navigate thru the hospitals halls and up the elevator.  There’s never a good age to have to use a combination of cajolery, bribery, stern voices and lecturing to get him through an eye exam, when he’s begging them to stop shining lights into his sore eyes.  There is never a good age to ponder permanent vision damage, to see his eyes not focusing.  There is never a good age to realize that your child is losing his childhood innocence, he’s understanding pain on a level that no child should.  He realizing that Mama can’t always fix it, and I hate that.  I hate the wisdom I see there, the knowledge that it hurts, bad, and he and I both know that there’s no way out.  He just has to hurt until the pain relief, the pitifully inadequate pain relief kicks in.

He’ll get better.  He will.  I’m never unaware that a pseudo tumor is, in fact, a fake tumor.  It’s not a real one.  But the reason that it’s called that is because the symptoms mimic a brain tumor.

I’m just going to leave that paragraph alone.  My son has symptoms of a brain tumor.

He’ll get better, I cling to that.  I cling to the doctor’s words, and ignore the wince on their faces as they try to phrase it in a way that’ll make me feel better without giving me false hope.  Most kids make a full recovery.  Most kids don’t have permanent loss of vision.  I track the medications and pop the pills in his mouth every night and every morning.  Hoping for a miracle, hoping today is the day I’ll get my boy back.  Hoping he won’t cry, hoping he won’t tell me how much he hates this, how much he just wants to be normal again.

Nine is the wrong age for this.