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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.

Mar 13

So much snow…

Third Nor’easter in twelve days, and I’ve grown to love these mid-week snow days.  I now think it’s utterly normal to go to public school for a day or two, take a few days off, and finish up the week.  I usually try to homeschool on snow days, but with Marc home today, I let it be a reading day (or an audiobook day) and chilled out with the kids all day.

It’s been a quiet day.  Jessie is suffering from a variety of maladies, including transient appendicitis, a headache, and (at times) her arms hurt, her legs hurt, and sometimes she’s just crabby.  She did walk the dog once for me, though, so she’s currently my favorite child.  Julie has been in jammies all day, and has been coloring or playing with the dog.  Sam usually walks the dog a few times for me, but with a blizzard – I just didn’t feel comfortable sending him out there.  He can’t see that well, and there was so much snow everywhere.  So it’s been me and Lizzie Beth outside.   Nobody loves snow quite as much as that dog does, and she bounces everywhere, all over the place, and comes in covered in snow and delighted with herself.

We achieved a massive and major homeschooling milestone the other day – Sam actually attended a homeschool event.  He’s bailed every time I’ve tried it, insisting that he doesn’t feel good, or needs to sleep more, or just doesn’t want to go.  But he needs homeschooling peers, and so do I.  When one of the (millions) of homeschool groups I belong to started thinking about getting a get together, perhaps a gaming get together, in the library the next town over, I signed up.  Ever hopeful, because I sign up for stuff all the time, hoping that he’ll go.  I sold it this time as a favor to me, I needed new friends, and he went along with it.  I think it was so important for him to see other homeschooling kids – I worry he might feel like he’s the only kid in the world who homeschools – because for him, he is. I know there’s a big world out there, and lots of families homeschool, but he’s not seeing that.  It was so good for him to see other kids who aren’t in school during the day.  Hoping that this will continue, and possibly I can get him involved with other activities as well.

There’s so much snow outside, I can’t see out the window.   It’s been blowing all day, and the screen is totally snowed over.

Mar 03

Bar Mitzvah

There are internal clocks that go off for me, when I find myself in a certain emotional place for no specific reason, until I look at a calendar and realize what’s happening.  For example, every February, April and July, I usually find myself going thru a week or two of massive baby-fever, where I really do regret not having more kids.  And it always takes me by surprise, because I never connect it to the kids’ birthdays until a week or two after the fact.  And as it turns out – I also apparently feel the need to start questioning everything spiritually around the time when my kids are 11-13.

We know we aren’t going to have a traditional bar mitzvah for Sam.  Even before the vision issues, even without the anxiety that would make a performance like Jessie’s incredibly challenging – this kid has some serious and significant issues with organized religion, with belief in God in general, and participation within in a religious community in specific.

But he’s still going to 13 before too long, and I find myself very aware of that.  Very aware that he’s going to responsible for himself, in an official sort of way, and that I need to prepare for that.  Even if I’m not following the same path I did with Jessie, with the meetings with the cantor and the reminding her to practice, and throwing myself into more involvement in the synagogue so that I’d set a good example for her – it’s still part of the process, of having an 11 year old son, of getting ready for him to be a man.

There’s something I cherish about the bat/bar mitzvah process, the idea that we take these kids, at the cusp of their adult life, and have this formal process of welcoming them to the club.  Of saying “you have a voice, and we’re going to listen to it.  You are a welcome part of this community, and a responsibility to stand up and be a part of it.”  Even though he’s not a particularly active member of the Jewish community, he is a part of MY community and he’s going to be adult.  I’m feeling this sense of urgency, like I need to hurry up and prepare him for… what?  Being fourteen?

Because the reality is, with Sam, he already has a voice.  I have changed the way I parent him, the way he relates with the world because he’s already been thru hell.  We listen to his voice.  I don’t force him to do anything – because I’ve already had to force him to do incredibly painful and scary things, and I’ll only do that now when it’s a life or death matter.  And I’ve learned that Sam, fundamentally, is able to do the hard things, and make the hard choices, when I step back and give him space to do so.

On a lot of levels, I already had to face everything about having him grow up because he’s matured in ways that the average 11 year old hasn’t.  He’s faced incredible pain, and the loss of everything he loved, and come thru the other side.

With Jessie, her bat mitzvah was this huge public thing.  We had hundreds of people at the service that day, and it was overwhelming for everyone.  It was a very public and emotional day.  She was beautiful and eloquent and amazing.  And everyone could see that.  People I didn’t even know were there, and they celebrated right along with us.

With Sam, I don’t know that we’ll do much of anything at the synagogue.  We might, but it might be a Thursday  morning, with just us.  His won’t be public and he won’t be eloquent.  I’ll be lucky if he’s standing up at the bima with us.  But it’s that same feeling of…. overwhelming love and pride and wistfulness, wishing I could get the time back, wishing that it would slow down.  Being so grateful for this child, in this place, at this time.

There’s something magical about this time in a parent’s life, when your child is not a child anymore.

Feb 26

Worst February Vacation Ever

We spent all week sick.  Poor Julianna started running a fever and kept it up all the way thru until Friday.  Just in time for me to come down with the same cold.  We did nothing, went nowhere, had no fun adventures, Jessie and Sam watched WAY too much netflix, we slept too much and had nothing fun at all ever.

But onward and upward… so the girls went back to school today.  Sam went back to homeschooling. It occurs to me that we are more than halfway thru this school year at this point, and I’m thinking a lot about what the future holds for all three of them.

With Jessie, her education plan is set.  We’ve got no plans on changing schools, and the main focus over the next year and a half will be on scholarships for college.  She’s got big dreams, and all of them involve a LOT of education, and that’s going to involve a ton of money.  She’s planning out what AP classes she wants to take next year, thinking about extra curricular activities and I feel like, with Jessie, at least, we’re in good shape.  Physically, we’re dealing with the Osgood Schlatter condition, and the sleep problems.  Oh, the sleep problems.  My girl doesn’t sleep well anymore.  She wakes up all the time, and has trouble falling back asleep.  We’ve tried melatonin, and a prescription from the doctor, but it hasn’t really helped.

For Sam – there are still a lot of questions.  Not in terms of his education, exactly.  He’s thriving in homeschooling, we’re moving quickly thru Level Five of Build Your Library, almost done with the elementary portion of Life of Fred, and while there are still areas where he needs to improve (specifically in terms of writing and reading), I’ve got ideas on how to work around them.  The obvious challenge for Sam is the vision aspect – while he’s literate and CAN read, it’s hard for him to see the letters, which makes it harder for him to be able to sound out the word, so he guesses based on length and starting and ending letter.  We’ve got an appointment with his pediatrician tomorrow for his yearly physical,and I’m hoping to get some answers about finding him the support he needs, in terms of Orientation and Mobility training, and if I can get it outside of the school system.  I’m also concerned about the amount of sleep that kid needs, he sleeps more than the other two girls.

With Julianna – in many ways, she’s thriving.  She loves school, mostly, and is doing really well when she’s there.  Elementary school is easier for her than it was for the older two.  She’s got the academic ease that Jessie had, combined with the social ease that Sam had.  She’s definitely got a tinge of the anxiety that plagued both of them, but it’s not as hard core.  I still feel really conflicted about Flagg Street, and nowhere near as certain as I’d like to be about what to do with her going forward.  She’s doing well, academically and socially, there, and I think she’s on the same path that Jessie was on.  And if I can get her into GSA, I know she’d thrive there.  But do I want to keep her at Flagg Street on the chance that she’ll be able to go to GSA in 6th grade?  Or should I think about private school – there’s a private Jewish school in Framingham that looks amazing.  Of course, it’s in Framingham, which means she’d be out of the house all day, every day, from probably 7-4.  I struggle with 8:30-2:30.  Homeschooling is always an option – but she’s got so many friends at school, and she loves that aspect.  Homeschooling Sam is going to make homeschooling a lot less social – he fights it so much.  Although I might have an easier time getting him to doing social things if I had Julie as well.  ARGGGG!  I don’t know.  Seriously – I don’t know what the right decision is.

So there are still questions and nothing is settled.  But Marc is doing great at his job, and loves it.  He’s happy and busy and I miss him terribly, but he’s really a perfect fit for this position.  I love not working – and being able to settle in and focus on the kids and what they need.  Lizzie Beth is still a holy terror, but she’s housebroken, and still eating everything in sight.  She’s barking and jumping and running all over the place, but so full of love and sweetness.

I don’t take any of this for granted – and there’s a part of me that still waiting for the other shoe to drop.  But the reality is that we’ve come a long way since the accident, and it’s possible that there is no other shoe. I’m probably still going to watch for it, though, just in case.

Feb 05

To Jessica Mary – Fifteen Years

Fifteen years ago, I was hugely pregnant.  Pretty sure that I was going to be pregnant forever.  I had already started my maternity leave, because we had scheduled a c-section a week ago, only to realize that Jessie had flipped when I went in for the last check up.  So I was home, feeling like it would never end.  And that was okay with me, because I loved being pregnant.

I felt like she was safe and mine and wasn’t ready to share her with the rest of the world.  I feel that way now too sometimes.

She’s going to be fifteen on Wednesday, and I need to get ready.

I’m no more ready to share her with the rest of the world than I was fifteen years ago.  But in the same way that labor happened regardless of how I felt about it – she’s going to be a sophomore, then a junior and then a senior and then she’ll be… out in the world.

Mothering Jessie has always felt completely natural.  I wanted to be a mother, so badly – and from the first moment I saw her, it was like something that had been missing my entire life clicked into place.  But it’s with Jessie that I constantly feel inexperienced, and like I’m playing catch up.  I no sooner adjust to having an infant and then she’s a baby.  I blink, and she’s a toddler, and then dancing off to preschool.  I can’t quite keep up with her, because it was yesterday that I was somehow the mother of a middle schooler, and suddenly we’re debating which AP class she should take and what scholarships she should apply for, and how far away can she go without me losing my mind?  (That last one is a consideration that I keep to myself – but breathe a sigh of relief when she tells me that she wants to stay within New England.)

At fifteen, Jessie is taller than I am, and so beautiful.  She’s brilliant and sarcastic and literally one of the funniest people I’ve ever known.  She’s still as emotional and intense as she’s ever been, only now she’s got a little maturity to add to it.  A little self-control, a little bit of restraint.  She still hates to fit in too much, hates to do anything on committee, and group projects make her crazy.  Her little sister is the bane of her existence, and I’m not entirely sure she’ll ever forgive Marc and I for making her share a bedroom with her.

I love this kid so much, her craziness, her kindness, her empathy and impatience and drive and humor.  Fifteen years ago, when I first saw her, I knew who she was and I knew who I was now.   And as much as I want to keep her all to myself for the next fifteen years, I know that I can’t.   There’s going to be so much changing soon, too soon.  She’ll get her license, and then her first job, and then college and an apartment, and if I spend too much time thinking about it – I’ll just end up in tears.  Because I’m no more ready now than I was fifteen years ago.

Jan 30

I don’t even care

The dog is crunching up a piece of plastic in the living room, my feet are icy cold because the one pair of socks I can find is in the bathroom, where Julie has ensconced herself and will remain for the next half hour.  Jessie stopped sleeping thru the night six weeks ago, and is miserable and incoherent, and I ran out of cream one cup into the day.

It’s snowing.

This is not a day I’ll look back on wistfully.

I do try and be present and mindful.  Aware of the blessings and joys of raising these three kids, married to this man.  But on days like today, when the dog has decimated two plastic spoons, and thrown up in the living room…I actually prefer to pretend I’m elsewhere.

 

 

 

Jan 24

Happy 44th

First a quick shout out to Julianna, who has a delightful habit of remembering my age, and reminding me thoughtfully at random times.  Because honestly, I’d probably forget.  I’m somewhere in my mid-forties.

Actually, I’m exactly in my mid-forties.

I find myself looking back over the past year, and thinking that it’s still so impacted by the accident.  The ramifications last so long with an event like that.  It’s been two years this March, and that seems odd to me.  It still feels so recent.

I’ve changed since the accident.  I parent very differently now.  I’m hyper-responsive to Sam’s moods, especially when we’re out in public.  Even though he’s doing so much better, even though he doesn’t actually need to have me being right there, as the scaffolding for him.  It’s still second nature to me.  Monitoring the mood between all three of them, is Jessie being snarky?  Can I let that go, or is it going to spiral into Sam getting upset, which is going to morph into impacting Julianna.  Is Julie getting upset about some unseen conflict, and will she burst into tears at the slightest provocation, which will in turn impact Sam in a way that he won’t be able to handle?

I’m writing this post after going out to dinner with all three of them, at a crowded new restaurant with a ton of people, spending the two hours praying that it all held together and nobody fell apart.

Nobody did.  Well, Julie did a little, but it was minor and not really unprovoked.

At 44, this is still very much my world.   Especially now, when I’m home full time and my world revolves around getting the girls up and dressed and packed and to school, and then homeschooling Sam, and then launching into the pick up, fed, jammied and into bed.   Ten years from now, it’ll be a very different world.  Five years from now, they’ll be 19, 16 and 12.  But for now, my job is finding the narrow path between overparenting and benign neglect.

I like where I am.  It feels right, this place, with these kids and this husband.  It feels like I’m getting to the place I dreamed of those nights in the hospital.  Where everyone is healthy, and whole, and growing up.  Where there’s no significant goal on the horizon, just more of the same.

And so I’ll greet my 44th birthday tomorrow happily, because this, right now, is exactly what I always wanted.

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