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Dec 13

The time has come

I can no longer shop at Children’s Place.  Or Gymboree.  Or even the little kid section at Target.

Julie’s built differently from her older sister.  Jessie was shorter, she fit in her age clothes from the time she was tiny.  When she was four months old, she fit into 3-6 months.  When she was seven years old, she was in size 6-8 clothes.

My Julianna Ruth is stunningly beautiful, and taller than almost every kid in her class.  She’s easily a full head and a half taller than her two best friends.  She’s got the same shoulders as her two oldest sisters, built taller and bigger.  She’s not overweight, she’s just bigger.  And she’s out of clothes.

Each morning this week has been a struggle to get her dressed, and at first, I blamed myself.  Clearly, I had fallen behind in laundry, maybe there were clothes that under her bed.  There must be clothes, somewhere, right?

There aren’t.  She’s just outgrown everything.

So – off the mall I went.  There are few places I dislike more than the mall, and the mall two weeks before Christmas is even less fun, but off I went.  Only to discover that suddenly, after fifteen years of parenting – I could no longer shop at my favorite stores.  Not that I shopped there very often, I’m the queen of hand me downs, and more often than not, I’m at Target or Walmart for clothes.  But I had always felt like I COULD go to Children’s Place or Gymboree, and I’m unbelievably sad that this time in my life is over.

I think both my girls are gorgeous and I wouldn’t change either one of them.  But if I could have switched their growth pattern, I feel like I would have adjusted better.  Julie’s only eight years old – it seems incredibly unfair that I’ve been shoved into the junior section when she’s still so young.

I was going to write that I miss having little kids – but the reality is that I DO still have a little one.  Eight is not the same as thirteen or fourteen – which is how old her sister was when I started shopping in the junior section for her.   It’s hard to find age-appropriate clothes for a little girl who still likes to rock a unicorn t-shirt.

Dec 12

Tiny secrets

We were at the sukkah celebration earlier tonight.  With three kids of varying ages, I’ve been going to the religious school sukkah celebration for fifteen years now.  But AP Stats homework got in the way for one kid, and another one fell asleep before I left, so it was just me and my youngest tonight.

Everything with my youngest these days is tinged with wistfulness, it seems.  She’s my last one.  And she’s not a baby anymore, at eight, she’s more than capable of getting her own drink and serving herself.  She even built her own sukkah herself, with graham crackers and frosting.

On the way home, she

(Edited to add that I had started to write this back in September, and something happened and I got distracted, and now whatever I was going to write is lost forever.  I was just doing this introspective little dance with myself, wondering if blogging was something that I still wanted to do – in light of the fact that all of the kids are getting older and I’ve been doing it for more than ten years now, I think.  Then I found this barely started entry, and am now wistful and sad because I don’t know what I was going to write, or what I was going to say.  It probably had something to do with having alone time with my baby, who’s not a baby anymore.  Or maybe it had to do with a discovery about Julie’s inner life, the stuff that goes on in her head when we’re not paying attention.  But it’s lost now, and it’s because I failed to blog it.  So that answers the internal debate of whether or not blogging is still something I should be doing. Sometimes you find the answers you were looking for in the strangest of ways.)

Sep 18

I’m not a cook

I mean, I really hate cooking.  Given the choice, I’d either eat out every night, and have PB&J or tuna fish if I was in the mood to stay home.

But with three kids, and a budget, plus a weird desire for them to have a somewhat healthy diet, cook I must.  And again, I hate cooking.  Like most things I hate doing, I do it badly.  I burn things often, forget to season or put in so much salt it’s inedible.  There are a few meals I can credibly make, and I repeat them, on an endless loop.  Every now and again, I toss in something new that Marc chokes down because he loves me, but mostly, food in this household is sub-par, at best.

But the one thing I could do was bake.  I bake challah and chocolate chip cookies and apple cake.  Cupcakes and brownies and snickerdoodles.  I LOVED baking.  It requires absolute focus for a few minutes, while you’re actually assembling it, and then you can set a timer so I don’t forget it when I wander away.

When Jessie was diagnosed with celiac disease, all of my baking came to a screeching halt.  Flour flying around the kitchen is like poison in the air for Jessie, and then even if she isn’t home, I can’t have baked goods around the house that she can’t eat.

Gluten free baking is HARD.  There’s xanthem gum, to begin with – which is so confusing, I can’t even spell it..   Almond flour, rice flour, it’s all baffling to me.  And the amounts are scary too – ingredient lists that are longer than the instructions for baking, and it all just seems too complicated to contemplate.

BUT – it’s Yom Kippur tomorrow.  Or tonight, actually, but we’re having a big Open House sort of Break the Fast, because everyone we know breaks the fast at different times, so we’re just going to have a ton of food out all afternoon into the night and see who shows up.

My go-to High Holidays dessert is apple cake.  I make THE BEST apple cake.  I mean it.  It’s fantastic.  And filled with gluten.  I tried a gluten free version for Rosh Hashana and ended up so disappointed I couldn’t eat it.  It was… bad.  And Jessie loves noodle kugel covered in gluten covered frosted flakes and apple cider donuts from the farm stand.

I’ve been baking for the past three hours (after cleaning all day, and then taking a brief break to attend the PTG meeting), and have finally achieved a baked good my baby will eat.  I make kugel with gluten free noodles and then crushed cinnamon chex on top.

When she told me my little donut holes tasted just like the ones from Tougas, I literally had to blink back tears.

I still can’t cook – but it’s possible that I can still bake.

 

Aug 31

IEP

I dropped off Sam’s IEP paperwork today.

I’ve been planning to do it for a month or so now.  I was just afraid.

I don’t ever want to repeat what happened to him.  Which is, of course, an understatement and too obvious to actually be what I’m saying.  But the two to three months prior to Sam’s accident was hellishly hard in ways that got lost after how bad the accident was – at least to everyone else.  For me, the accident was just a nightmarish continuation of a situation that had gone downhill so fast and so far.

I don’t know if I want him back in public school.  But I do know that what I want isn’t as important as what he wants.  And if he thinks that going to school is what he wants and needs, then I need to do whatever I can to make sure that it’s possible.  And not only possible, but I want to set it up so that he can succeed, to structure it in such a way that he can do what he needs.

No decision is permanent, and I can pull him out if necessary.  Not even if necessary, if he decides that he can’t do it, or doesn’t want to do it.  Homeschooling is going well – not fantastic, but well enough that I can see doing this up through high school.

Part of what happened, with the accident, is that in a real way, everything changed for Sam.  We were so lucky that it was just a psuedo tumor, just a big scar and vision loss.  It changed everything.  All of those expectations and hopes that you have when your child is healthy and neuro-typical – those seemed…. beyond what we could think about for a while.  Rebuilding that is both incredibly empowering and terrifying.

This is a hard time.  Nowhere near as much as when he was in and out of the mental health clinic, and not even close to when he was in so much pain and terrified.  But it’s still not easy.  I’m afraid of the future.  I’m optimistic about it too – because he has come so far, and is doing so well – but there’s a lot of damage and baggage from the past few years.  I’m not as resilient as I was before, I know how bad it can be.  It’s a lot harder when you don’t know what it’s like to have a child lost in anxiety and fear and rage and terror.   When you haven’t sat in the PICU, with doctors coming in and out of the room, all offering a different treatment plan…

This is where we are.  And I’m so grateful for it.  Just hoping that the gratitude and optimism wins out over the fear and anxiety.

 

Aug 28

Summer 2018 retrospective

It was a weird sort of summer for us.

Jessie had a ton of homework, and several scheduling snafus that led to her doing an enormous amount of work for a class she won’t take until next year.  Sam announced happily that he’s ready to think about going back to school, and Julie spent an absurd amount of time watching the Harry Potter movies and far too many Kids Baking Championship shows.

We did hit the beach a few times, several day trips into Boston or up to a lake for a while.  I had big plans that we’d do so much – and we really did next to nothing.

The girls fought almost all the time.  Sam slept far too much.

But on the upside, it did mean that we’re very excited for the start of the school year.  Jessica is starting her sophomore year (three years left – insert dramatic sob here), adn Julie is in the third grade, and so far, loves her teacher.  Sam is finishing up Level 5 in Build Your Library, and hope to finish Level 6 this year.  We’ll finish the intermediary levels in Life of Fred for math and start the decimals and fractions books this year.

I’m feeling… content.  Things are going really well with Marc’s job, and I’m so grateful for that.  He’s happy and fulfilled, and the hours are so much better than anything he’s had before.  He does have to work at home a lot at night, which sucks, but he’s HERE and that’s enormous.  Both girls are thriving – they both wanted to go to public school (because I lobbied for homeschooling for both), but they’ve got friends and like the routine.   And so far… it works for them.  Sam is doing fantastically well at homeschooling this year.  So much more amenable and open to learning, to structure and trying new things.  Which makes it both harder and easier.  Easier because it’s just so much easier, but harder because I know he wants to go back to public school eventually, and I’m dreading it.

It was so hellishly hard before we pulled him out of school.  His anxiety was thru the roof, and now we’ve got a TBI and low vison to add onto the burden.  It’s been three years.  Well, two and a half, and we were just now at the point of starting to maybe think about starting a little math two years ago.  I want him to succeed.  I want him to know that when he works hard and does his best, it gets him the results he needs.  I don’t want him to slam into his disability.

I want him to not have a disability.  But if wanting made it so – the past three years would have been very different.

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.

 

 

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