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Jul 05

Samuel Earl – on the eve of his 12th birthday

I don’t believe he’s going to be twelve years old.

When I look back over the past twelve years, I find myself thinking about how I’m never quite sure what I’m doing with Sam.  He was my first natural birth, because Jessie was a c-section, and I had no idea how to push.  Everyone kept telling me to push, and I was confused and bewildered, and I swear to God, he just pushed his way out on his own.  He knew what he needed, what he wanted, and he made it happen.

Same thing with nursing.  I had nursed Jessie, but that was a completely different experience.  Sam was a voracious nurser, and nursed for comfort as much or more as he did for nutrition.  I was baffled by it – I had taken detailed notes on how long and which side with Jessie for weeks – but with Sam, he nursed so consistently, so often, I gave up tracking it on the second or third day.   Again, he knew what he needed, and he made it happen.

I didn’t initially get that Sam had an anxiety disorder.  I thought it was normal separation anxiety, maybe a little more pronounced because he was a boy.  He wasn’t anxious when he was with me.  Sam knew what he needed to feel safe, and he fought like hell to make sure he got it.

When we made the decision to pull him out of public school, I was terrified.  I had no idea how to homeschool but I knew trying to force him into a public school setting was harming him.  When he was in the accident – suffice it to say that terror was the least of what I was feeling.  It was the very worst time in my life, and even now, writing about it is enough to bring me to tears.

But I will say that Sam knew, all the time, exactly what he needed.  We just needed to learn to listen to him.

I’ve learned to trust him, to give him space to come to the decision on his own, whatever it is.  To give him the safety and security to grow and learn and struggle and dream, and I know that whatever Sam ends up doing in his life, he’s going to do it better than anyone could have imagined.  Because this kid is the strongest person I’ve ever met, with a better sense of what he needs and how to make it work, and I am constantly in awe of his ability to handle impossible things, to find a way to make it okay, and to quietly work to achieve his goals.

Happy birthday Sammy – my buddy, my guy, my killer of bugs, and lover of dogs.  You are amazing and inspiring, and when you sing ‘It’s Raining Tacos”, it’s the best thing I’ve ever heard.

Jul 04

Heat Wave

We don’t handle the heat well.

I mean, we try.  But my family is not one that enjoys weather extremes.  We are made for the in-between seasons, balmy spring days, when the leaves are just poking out and the air finally feels warm after months of icy hell.  Pumpkins and cranberries, when the foliage is changing and we can crunch thru the leaves when we walk the dog.  This is just ridiculously hot, all the live long day and the nights are worse.  Everything is so STICKY.

We’re six days into a seven day heat wave, and counting the minutes until Friday.  Raging thunderstorms seems like a perfect way to celebrate Sammy’s twelfth birthday, and I can’t wait.  For the drop in humidity – I’m wistful and slightly intimidated by the prospect of my baby boy turning twelve years old.

Jessie is drowning in summer reading, as per usual.  It’s tough to tell how much of it is self-imposed, because she really does seem to exist at this hyper level of stress, but as she says, she likes it that way.  And she’s self-aware enough to know that it’s a choice she makes, she’s choosing to be in an academically advanced program, and to take a bazillion AP classes.  She could drop down to an honors level, or even choose to be homeschooled if it was too much (and I’d be fine with either of those choices), but she really does like going to school, and loves learning.  We’re moving ever closer to her thinking about college, and that scares me more than the idea of Sam being one year away from teenhood.

Julianna is having a low-key, quiet summer.  Sam’s busy with homeschooling and sleeping (because he still does that like it’s his job), and Jessie’s constantly in the middle of one project or another.  Julie is drifting a little. I need to get on top of that, schedule her some playdates or get her doing more homeschooling activities.  She was adamant that she didn’t want to go to camp, and I didn’t want to pay money for something she didn’t actually want to do.  But I’m noticing a lot of general moodiness and she’s bored.  Which could be the heat – I’m pretty moody and bored too, because it’s too damn hot to want to go anywhere or do anything.

 

May 31

End of the Year 2018

It’s been an interesting school year.

A year of huge changes for Jessica.  She started off her year with a concussion that took an unreasonably long time to go away.  She then fell, injuring her knee which led to near constant pain and a diagnosis of Osgood Schlatter disease.  She was just barely off the crutches when she came down with a virus that mimicked mono, but wasn’t.   She finally got better from that, only to come down with stomach pains that wouldn’t go away and would up with a celiac disease diagnosis.  Despite all of this – I think that she had more FUN this year than any other year since she started school.  She worked her ass off, all year long, starting with last summer, and earned all the grades she got.  She made new friends and grew up a lot this year.  Freshman year will probably still go down as a ridiculously hard year, with all the injuries and illness, but I’m so proud of my girl.

Sammy and I did a TON this year for homeschooling.  We completed all ten of the elementary school books in the math program, and will complete the intermediate series this summer, gearing us up to do Fractions and Decimals and Percents next year – he’ll start pre-algebra in what should be his seventh grade year.  Which is right where Jessie started it, in her academically advanced program in public school.  We read a lot of books, finished up Ancient History and Euro history thru the Middle Ages, and started with Ancient History in the US – and we’re on track to finish up the Level Five by the end of this year, hopefully by September to start Level Six at the same time he’d be starting sixth grade if he was in public school.

Miss Julianna had another great year in public school.  I am so on the fence with her, because I know she’d thrive in homeschool, but she’s got so many friends and seems so content in regular school that I hesitate to pull her out.  She’s far and away the best reader of all of my kids at her age.  She reads for pleasure voluntarily – and Jessie didn’t start doing that until closer to fifth grade.  She’s a significantly better reader than Sam is – although to be fair, she can see all the letters easily, which is a major hindrance to Sam and his reading.  We tried Brownies and she hated it so much – which was so sad for me because I loved it.  But we’ll try dance next year, and see how that goes.  I worry about my Julie sometimes, she’s the easy one, with Sam’s eyes and anxiety and Jessie’s food issues and overall dramatic intensity – Julie has to fight hard to get attention and focus sometimes.  But she’s holding her own, more and more.  Next year, she’ll be going into third grade, and she can’t wait.

Next year, we’ll be going into Jessie’s sophomore year, Sam will be in what would be sixth grade (and wow – that sounds insane that he’s that old now) and Julianna will be going into third grade.   Lot of big changes coming up – we’ll start looking at college junior year for Jessie, Sam’s going to be growing taller and getting more independent, and Julianna will start getting homework and more extra curricular activities.  We’re completely in this new stage, when the kids are big, but not grown up yet.

 

May 20

Nobody said it would be easy

Although for a long, long time, it was.  We were broke, all the time, and we struggled with scheduling and had only one car.  Our place was too small, and the kids were everywhere, and there was SO.MUCH.STUFF.

But even with that, I still knew that we were ridiculously lucky.  All of the kids were healthy, we were healthy.  Things were easy.  We loved each other, loved the kids, and looking back now, it all seems so much more idyllic than it really was.

It’s been a hard month or so, dealing with Jessie’s celiac diagnosis.  I’m still waiting for Sam’s blood results, and we’ve gotten it confirmed that Julie does not have celiac disease now.  She does have the genetic markers, so we’ll add on a celiac test every time she does bloodwork, and keep an eye on her for symptoms.

Jessie’s struggling, hard.  The first few weeks without gluten were brutal.  She was sick and lethargic, unbelievably miserable.  Combining that with the end of the year rigamarole that comes with being a high school freshman in an academically advanced program was… it was hard.  Then there were three glorious days, where she suddenly felt good.  Had energy.  We’d found snacks and foods that she liked, and were gradually getting used to the new reality.

Then she got sick.  She went to a USY convention for the weekend, and came home with a vicious cold.  And it’s been downhill ever since.  It’s like the last straw for my poor girl.  She’s lost so much, the ability to eat anything, to grab something quick at the store.  She can’t just go anywhere, any restaurant choice has to be debated and questioned, and even then, it’s not going to taste as good as it would have if she didn’t have celiac disease.  We went to Chik Fil A yesterday, because it’s the only fast food establishment, and she ate the grilled chicken, but missed the normal nuggets.  Then we went to Five Guys (another one of the only restaurants that she can go to easily), and that was just… yuck.  A greasy burger wrapped in lettuce.  All little things, and she could roll with it – but she feels so sick from the cold and the coughing and the fact that she can’t eat, just eat, without it being a production all the time….

And Julie’s caught the cold now, plus Sam is sleeping constantly, and Marc’s working seventy or eighty hours a week – and I’m just worn out from the past month of trying to adjust to having one kid with a disability and anxiety, and another one now with a chronic auto immune disorder that affects everything she eats for the rest of her life.

It’s May – and the end of the year.  The girls are sick of going to school, and I’m even more sick of sending them.  Sam and I are still trudging thru homeschooling, and it’s going well – but it’s also hard to keep cramming in the time in between appointments and school trips and sickness.

This is a hard time for us.  It’s just a hard time.  It happens.  Sometimes it happens and it’s awful, and your son is in excruciating pain and losing his sight, and the doctor’s don’t know why and there’s no easy answers and it’s impossible to see how this turns out okay.  This isn’t that bad.  I can see how this comes out okay.   We’ll adjust to this.  She’ll adjust to this.  It’ll be okay.  It’ll be second nature soon.

But right now?  It sucks.

 

May 01

Sadness

I’m just sad today.

Sam’s sick today, was throwing up last night, and is still asleep in the living room.  He was throwing up a few weeks ago too, and even though Marc is convinced it’s just a random run of the mill virus, nothing to worry about, a part of me is convinced that we’re right back where we were before the accident, when he had all those awful stomach problems and we couldn’t figure out why.

Jessie’s still processing having celiac’s disease, and I am still trying to adjust to the reality that my child has a chronic auto-immune disorder that’s going to impact her life in such a huge and permanent way forever.

We had Julianna tested, and while her celiac panel came back negative, her genetic typing showed that she has at least one of the genes that’s predispose her to developing celiac’s at some point.  Given that she’s much more prone to an upset stomach than the other kids (whereas Sam is much more prone to diarrhea/vomiting), I’m at least halfway convinced she has celiac’s too – and the blood test is simply a false negative.  Based on my extensive medical degree… I’m just guessing with all of this, and the not knowing is so hard.

We’ve got an appointment with Jessie’s GI doctor on Friday for Julianna, and hopefully I’ll get some clarity or at least some guidance on where to go next.  Jessie and Julie had the same allergy results, slightly higher than normal for egg white, wheat and dairy – but the allergist said that they weren’t statistically significant enough to worry about.  And then Jessie got the celiac diagnosis, which meant that I was perfectly content to not worry about the allergies.  But with Julie – I don’t know if I should be avoiding egg white, wheat and dairy, or if I should ignore that too.  I don’t want to put her on a gluten free diet if I don’t have to – but if it would help her… I just need to know.

I’m just sad.  I don’t want my kids sick.  I don’t want to have Jessie afraid to go out for lunch with her friends, or for Julie to not be able to order her chicken nuggets/french fries/chocolate milk combo that’s been her standard order at every restaurant we’ve ever been to.  I don’t want to have to subject Sam to more gastro appointments and bloodwork and testing – but I can’t help but wonder if he’s developed celiac’s as well.  I keep reviewing what he ate yesterday – was there gluten somewhere in there?

I sent Julie with a tortilla to school today.  I feel guilty.  Even knowing that if she does have celiac’s, she needs to be eating gluten before the endoscopy.  If they do an endoscopy.  Should I be pushing for an invasive medical test to confirm or rule out celiac’s?  Or is the bloodwork sufficient?  Does having a first degree relative test positive, abdominal distress, and positive genetic testing mean that I should just go gluten free and see if it works?

I just keep going around in a circle.  And nobody really gets it – because going gluten free is so popular these days – it’s such a trendy thing to do.  It’s no big deal, so your kid can’t process gluten.  But it’s very different to avoid gluten by choice as opposed to being told that gluten is comparable to rat poison for your child, and has to be avoided at all costs.  And there’s virtually no guarantee that you aren’t going to inadvertently be a victim of cross contamination.  Jessie’s celiac is so serious and real and terrifying, and not knowing if Julie has it, or if Sam has it (despite having all of these symptoms back in 2015 and testing negative both with blood work and colonoscopy/endoscopy combo).  I hear I’m being fatalistic or too negative – but the consequences for untreated and undiagnosed celiacs are so scary – how could I not do everything I can to figure out if my kids have this?  How do I not worry and plan and stalk the nurses and doctors to get the right tests ordered, and said results explained to me?

It’s a sad day for me today.  Or I should take my own advice – I always tell the kids they can change the phasing to make it better – it’s been a sad morning for me.  I’m sleep deprived (because of course the vomiting for Sam would be in the middle of the night) and scared, and those are not a good combination.  It’s been a sad morning for me.  It’ll get better.

 

 

Apr 30

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.

Apr 20

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.

Apr 13

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.

Apr 12

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.

 

 

Mar 26

Damage

It takes so little for me to go back there, to that place of being so scared for Sam and feeling powerless to make it better.

We’ve been homeschooling for three years now.  Or it’s been three years since the accident (because that first year is just a blur of doctor’s visits and white rice).  I’ve built a curriculum that works for him, super heavy on reading and history and science, we’re finished with elementary math and moving on to intermediate.

But there are still this areas where I’m lost and in over my head.  I decided to pursue getting him evaluated to see if there were any learning disabilities that he’s dealing with on top of the low vision.  Is he dyslexic?  Dysgraphic?  Or is it that he stopped being able to see easily in the beginning of third grade, and then missed another year before we started working on actually writing things down?

But, oh-my-God, it’s hard.  Even the thought of putting him thru testing makes me teary eyed and vulnerable.  It’s all tied up together, evaluations and eye tests, holding him down for anesthesia as he begs me to take him home.  Arguing with doctors and nurses, trying to find coffee on darkened halls just to stay awake, because it’s been 36 hours since I’ve slept and I need to be alert for my boy.  All of it is right there, and it’s terrifying in ways that I’ll never, ever be able to forget.

I can push it down.  Process it, feel it, and then move on.  It doesn’t impact my life all that much anymore.  Getting shots is hard, I still get a lump in my throat whenever he complains of a headache (which is blessedly rare).  But this whole idea of getting him evaluated is terrifying to me, and I’m torn between forgetting that I ever thought it was a good idea and pushing on, advocating for more and more testing so that we know exactly what he needs to get the education he deserves.

Homeschooling is easy, after all.  I love it, I love teaching him things, seeing how his mind works and marveling at the things he can do.  But reassuring myself that I’m doing all the right things, that I’m not missing steps that we should be taking, knowing that there’s no guarantee, nobody making these decisions but me is both exhilarating and horrifying at the same time.  I don’t want anyone forcing Sam, I truly believe that I know him better and how to best work within the limits of the disability and the anxiety, and the thought of trying to cram his little square mind into a round hole… it’s terrifying.  Because the last time I tried, it led somewhere I’d rather never ever go again.

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