Archive | April 2016

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.

The new normal

I find that I don’t want to write much about the past week.  Which is odd, for me, at least.  Writing is how I process it, whatever it is.  Writing is how I re-live things, it’s how I figure out how I feel about things, it’s how I make sense of the events.

I don’t want to re-live, I don’t want to figure out the worry and the fear and the pain, and I don’t see any way to make sense of it.

What I will do is cling to the prognosis that most kids recover completely.  His optic nerves will probably regenerate, his eyes will eventually stop wandering around in the sockets and work the way they’re supposed to.  He’ll probably be able to come off the meds, and regain his life again.

I quit my job today.  Well, maybe not quit, I might be able to work a little bit from home, hopefully, but after the past two weeks, it’s clear that working out of the house for 32 hours is no longer an option.  It’s clear that working out of the house on a regular basis is not an option.  Sam needs round the clock care, from me.  My girls need me, my husband needs me here.   My family can’t function without a full time parent at home, for the moment.  I hope it won’t always be like this – but it is for the foreseeable future.

This is the new normal.  It’s noontime, and I’m writing with the dog curled up beside me.  Sam is sleeping, and I’m grateful.  Yesterday was a busy day for him, with a doctor’s appointment in Boston and then lunch on the way home.  He can’t stand up for any length of time today.   I’m caught up on laundry, for what it’s worth.  My living room is clean.   And I posted a blog post for the first time in almost three weeks.