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

May 2018Monthly Archives

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.

 

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.

 

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.