web analytics
Writings on Motherhood, Judaism, and Happily-Ever-Afters

April 2018Monthly Archives

My Julianna – 8 years old

Each child is different, and each one brings their own magic into the mix.  Julianna completed our family, in a way that is utterly perfect and exactly what I would have hoped for.

Her pregnancy was a family affair.  Sam, Jessie and Marc used to come to the bathroom and Marc would hold my hair, Sam would hug my legs and Jessie would rub my back when I threw up (as I did throughout that entire nine month process).  She was the most cherished baby, with everyone fighting to hold her, to snuggle her, to rock her.  She was the baby that was closest to her dad, the one who made up her own sign language to tell me when she wanted him.

I used to joke that Julie was my reward.  After such a hellish pregnancy, after years of trying to force Sam into social situations, after all of the hard parts of having babies and toddlers, Julianna was so easy.  Her birth was a breeze, literally one of the best experiences of my life.  I had one bad contraction, and then the epidural kicked in.  I was in labor for less than three hours, pushed twice, and was laughing when she was born.  She universally loved everyone, and still has an easier time transitioning and adjusting to new situations.

She was hell to nurse for the first three months, but then went on to nurse happily until well after her fourth birthday.  She slept next to me every night until she was five, and then snuggled to sleep in my arms every night until she was old enough to claim the top bunk.

Julie is my angel girl, my sweetest, sweetest baby.   At eight years old, she’s sassy and smart, devours books faster than I can take them out of the library for her, loves her dog and her Daddy, battles with her big sister, and still misses Sammy going to school with her.   Julie is growing up faster than I’d like, with three older sisters who talk about EVERYTHING at the dinner table, she’s better versed in sexual politics and gender identity and why we have to take back the House and Senate in November than the average eight year old.  She wants to be big, to have her own phone and be able to babysit and cook.  She’s the kid who always wants to hang with me, folding laundry or making dinner.  She asks for a minute, just a minute, to compose herself before shots or bloodwork.  She’s articulate and thoughtful, self conscious and aware, just on the cusp of outgrowing the little girl designation.  She’s quiet and reserved, and endlessly polite in social settings.  When she’s alone with me, she talks and talks and talks, and I love how her mind works, and the words she uses to express herself.  She’s ready for so much more – and I wistfully want to wrap her in a snuggly blanket and rock her to sleep just one last time.

Happy birthday my beautiful girl.  I love you so much.

Celiac’s Disease

I was writing a lovely little post about April vacation.  We did a little walking, a little hiking, a little cooking.  A little hanging out, a little rearranging.  A little homeschooling, because it’s not vacation for Sam, and then it all came screaming to a halt on Wednesday afternoon.

A few weeks ago, Jessie had had some bloodwork done.  It was routine, almost.  She’d had some abdominal pain, nothing huge, but it was there, and her pediatrician ordered bloodwork.  I was positive it was nothing.  Which is why I was so shocked when she came back testing positive for wheat, egg white and dairy.  I had just barely  managed to adjust to that (we hadn’t seen the allergist yet, don’t panic, don’t change anything yet) and the next day, her pediatrician told me that her celiac panel came back positive too.

It’s been a whirlwind of doctor’s visits and problems and issues lately, and I feel as though I spend a large portion of my day on the phone holding for a nurse.

I was in the office, scheduling appointments for Sam as a follow up for his physical.  He’s mostly healthy, but has acid reflux and he did have a pretty significant traumatic brain injury a few years ago.  Then Jessie had the allergies, and somewhere in the middle of it, Julie sprained her elbow.

Anyway – the allergist.  So the allergist confirmed that her numbers were barely outside of the normal range, and nothing to worry about.  Her gastroenterologist was not as reassuring, and wanted to send her in for an endoscopy.  So we did that.  But I was pretty sure it was nothing.  The allergies were nothing.  And the likelihood of her having celiac was less that one percent, we had no family history of it.

But on Wednesday afternoon, while we were at the dog park, in a misguided and mostly unsuccessful attempt to socialize our poor puppy, we got the call.   Positive for celiac.

Suddenly, I’m in this new place, where we have to revamp everything about her diet, figure out how to do it in a way that makes her feel empowered and successful, and still manage Sam’s overwhelming food issues, make sure Julianna (who is just like her sister, down to the vague stomach complaints, the body aches, the fatigue) gets tested as well.  I’m on the phone for hours, talking to this doctor or that one, or more likely the poor nurses and admins (many of whom are now on a first name basis with me).

Jessie is so positive and handling it so well.  On the day she was diagnosed, she told me that there were kids that day who got a cancer diagnosis, so she wasn’t going to complain about celiacs (and on the 30th anniversary of Bridgett’s death, I know exactly what that means).  I think on some level she’s relieved that there’s an answer for all of the problems she’s had this year.   Plus her best friend has it, so it’s not as scary and unknown for her.

But it’s still scary and unknown for me.  For Julie, who keeps asking if Jessie can eat mayonnaise, or chips, or soda.  It’s scary for Sam, who’s already so freaked out about food and not knowing how her diagnosis is going to impact him.  I’m online all the time, with gluten free cookbooks and memoirs all over the place.  Marc’s going gluten free as well, and I love him so much for that.  I can’t make the house gluten free, at least not yet.  We can work towards it, but with Sam and Julie… it’s going to be a process.

We’ll figure this out.  She’s fifteen, old enough to know what she’s doing, to advocate for herself.  Young enough so that Marc and I can still guide her and help her and teach her what she needs.  But wow – this is not the April vacation I had planned on at all.

What doesn’t kill you, makes you stronger

There’s a book I’ve been waiting to read (it’s on hold at the library) and it’s called “Everything happens for a reason and other lies I’ve loved.”  I’d want it for the title alone.

But there’s another platitude that I hear a lot, and it’s that whatever doesn’t kill you makes you stronger.  That’s not true either.  What doesn’t kill you can just damage you in ways that won’t ever really heal and leave you weaker, less resilient and more prone to tears.

All of this is the roundabout way to say that Sam’s sick.

He woke up vomiting, and has thrown up six times within the last two hours.  I’m fine on the outside, soothing him, switching out buckets for him to throw up into, rubbing his back and assuring him that I’m right here, and he’s going to be just fine.  But inside I’m shaking and can’t stop worrying that maybe it’s an ulcer or his small intestine is damaged or it’s something else.  He ate taquitos for dinner last night, with red peppers.  Are there tiny flecks of red pepper in the vomit, or is that blood?  I tried to resist googling it, but couldn’t stop myself.  It’s tiny little drops, probably nothing.  And it might be peppers.  But I could go from here to hysterical sobbing in two seconds if I’d let myself, and it’s only thru sheer will that I’m managing to hold it together.

I’m not stronger after going thru Sam’s accident. I’m weaker.  It’s easier to be strong when you don’t know what might happen, when you haven’t gone thru sitting in the PICU, not knowing what’s wrong and not knowing if it’ll get better.

He’s fine.  It’s a stomach bug.  He’s not running a fever, and he’s sleeping comfortably now.  He’s fine.

If I keep repeating it, maybe it’ll be true.  Only I know that repeating it doesn’t actually do anything – because I’ve done this before.

But I keep going – it’s a stomach bug, he’ll be fine.  Meanwhile, I keep texting Marc for support, and try to stop myself from googling.

Hospital visits

Jessie had an endoscopy yesterday afternoon.  We did allergy testing a few weeks ago and her celiac panel came back with elevated numbers.  The only way to rule out celiac is to do the biopsies and the only way to get the samples is to do the scope.

We had to go into Boston for it, because our pedi gastro works out of the Worcester office for Children’s Hospital, and the procedures are done in the Boston hospital.

I arranged for childcare (in that I made Marc take the day off), and planned on driving my little self and Jessie into the hospital by myself.  Oddly enough, with all the time we spent in Boston with Sam, I had never driven in myself.  So that was vaguely scary and new.

What I didn’t expect, and probably should have, was how incredibly tense I got the closer we got to the city.  As we passed the familiar landmarks, the dog hotel that we always pointed out to Sam, the billboard for PBS that we used to talk about – my stomach felt like it was tying itself into knots.  My hands clenched the wheel, and I started flashing back to all those trips on the Mass Pike, driving Sam into Tufts hospital.

Needless to say, taking a relaxed and in all other aspects healthy fifteen year old in for a quick procedure is a completely different experience from hauling a desperately injured and terrified nine year old in for an undetermined amount of time.  There was always the risk when we went into Boston that we might not come home that night.  He might be bad enough that he’d get admitted.   Jessie was relaxed, playing on her phone while we waited in the waiting room, friendly and engaging with the nurses, and totally at peace as they put in the IV.  She was giggling as they wheeled her off for the procedure (God bless the drugs).

It was less than a half hour, and it was over and she was awake.  She was a little loopy, unreasonably delighted with her root beer popsicle, and very proud of herself for being, as she put it, “so polite and poised in the room.”  She commented in passing that there were two of me, as she was seeing double, and then giggled with herself over how dizzy she was.

It was actually a fun day.  Which is not at all how I’d describe taking Sam into the hospital.

We won’t have the results until next week.