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Apr 11

Thoughts on a Three Year Anniversary

Marc told me once that he thought losing a child is the worst thing. Losing a child slowly is the second, and watching your child suffer in pain is the third worst thing that any parent can go through. Sam wasn’t ever near death, but the pain and the trauma is something that I don’t think any of us will ever fully get over.

My life is separated into two parts, before the accident and after. I trace back to this time three years ago, before the pseudo tumor diagnosis, when he was in so much pain and nobody knew why. I remember the sheet of paper on the refrigerator that I used to track which medication I gave him and when. I remember the white rice he ate, endlessly, because everything else tasted terrible. I remember how he cried, how he screamed in pain and would pass out in the middle of it and wake up screaming again in an hour. I remember standing in his hospital room, as the medical rounds were happening, and every specialist who came in had a different prognosis and treatment plan. I remember falling apart on the cleaning lady who came in to replace the toilet paper, because I couldn’t hold it in any longer. Nobody knew what was wrong with my baby, nobody knew how to fix it, and I couldn’t see any way out.

It was simply horrific, and as much as I want to, I’ll never be able to forget.

Things are on the cusp of changing suddenly. Or not suddenly. We’ve been moving to this point since the accident. He’s been healing, and growing and getting ready for this for years, and I find myself, today, on the edge of Sam starting back at school (albeit on a very reduced schedule) thinking back on where we were and what we’ve done. The decisions we made when nothing felt like a choice, and what the ramifications of those decisions were on all of our lives.

Could we have accepted the blindness earlier? Done more, sooner? Did I shelter him too long, let him stay home and safe and accommodate the disability instead of teaching him how to deal with it? Was it a choice? Or was it always going to have to come from Sam, was it always going to be when he was ready to make these changes and not a moment before?

Sending Sam back to public school, even on a very limited basis terrifies me. I’m afraid it won’t go well, that he’ll hate it, that he’ll convince himself that he CAN’T do it. I’m afraid of sliding back into that place, that dark, dark place, where he was afraid to leave the house, afraid to go to a store or out to a party. I’m afraid if school goes badly, it’ll teach him that he can’t do any of those things.

I hide all of it. I fight for him to go to school. I fight with everyone. I cry at so many meetings and gatherings, I’m pretty sure the school system gave in and did what I wanted just to make sure that Weepy McGee would stop showing up everywhere and sobbing all over them. I’m the public school cheerleader, promising incentives for going when he’s reluctant, doling out video games and trips to the Dollar Tree with reckless abandon. I say all the right things because he needs me to believe that he can do this. And so I believe. Even when it terrifies me.

Because, in the end, this isn’t about me at all. And whatever happens, if he thrives in public school, or hates it and comes back home, it’ll still be the right choice for him. Sam has survived unimaginable pain, and the slow loss of vision. He’s learned that terrible, awful things happen when your mom is right next to you, with no warning and it’s nobody’s fault. He’s learned things that I never wanted my baby to know, how to manage pain, how to distract yourself from loss, and how to claw your way back to normalcy. Wherever this journey takes him, I know he’ll get there in his own time.

Mar 31

How I Am Surviving Sam’s IEP Process

Quick disclaimer – I don’t recommend this path. It’s counter to everything I think the IEP process should be, and it’s exhausting on every level. But it does work – because while I’m not done, I’m slowly getting everything we wanted for Sam for next year.

Okay – here it is. I just cry.

The problem with the public school system is that it’s designed to educate mass numbers of children. They’ve got thousands of kids to process, and do their best to provide the best for the most. And with most of kids – it’s fine. I’ve got two girls in public school, and they’re both thriving.

But with Sam – he NEEDS the Individual Education Plan. He can’t get crammed into whatever works for most kids. I wish he could, God, I wish he could. But the reality is that with the anxiety and the vision loss, this kid NEEDS his own individual plan. But trying to get it is so incredibly hard. It’s just not what they do – and because Sam’s so specific in his needs, I need to involve the homeschooling department, the Special Ed department, mental health, TVI’s and we also needed approval to send him to a school outside of our district.

The struggle is getting people to see Sammy. Really see the kid, and what he needs, so that they understand why I’m asking for what I’m asking for. And the only way I’ve found to do is to just sob.

I elevate without hesitation, going to the school committee, Directors, department heads, principals. Anyone I can. And I explain, exhaustively, over and over again. And without fail, I just break down and cry. But what that does is force the system to acknowledge his humanity. I need them to see who Sammy is and the best way to do that is through my eyes.

We’re not done yet. There’s still a lot left to accomplish, but we were able to confirm that he’ll be able to attend the school I wanted him to, despite it being out of district, and we’ve already got approval for partial enrollment. The school department is looking at it as we’re still homeschooling, and that’s fine, but he’ll be taking English, Math and braille at school, and I’m shooting to add in homeroom, lunch and art, and then gradually increase him up to full enrollment. It might take me a year to get him to full time enrollment, and we might decide to pull back and do more of the education at home.

Mar 25

The Blind Kid

Purim has never been one of my favorite holidays.  I was first introduced to it as a new mom, with a tiny baby girl who was terrified of the rabbi dressed up like a gorilla.  My subsequent kids were panicked by the megillah reading, with the shouts and noisemakers and then the inevitable arguing over who got which treat in the mishloach manot baskets – it’s always been the Jewish holiday I struggle to connect with. 

But my kids have gotten older, and a lot of the hard parts of Purim have been outgrown. One of the more challenging parts for me has always been in figuring out what to wear, and the kids are old enough now to pick their own costumes.  Then my son announced that he had decided to go as a blind kid instead of a policeman.

The irony is that he is visually impaired.  Sam was in a bad accident a few years ago, and lost vision as a result of his injury.  The vision loss was slow and gradual, and thus, accepting his disability has also been slow.  I don’t think either of us was ready to admit that his vision was really that compromised.  He’s right on the edge of legal blindness, with enough functional vision to make it not a foregone conclusion that he needed braille.  Because we started home schooling right after the accident, I was able to tailor his education to meet his abilities, and the fact that he couldn’t see to read was easy enough to gloss over.  But as he’s gotten older, he’s gotten more independent, and this year, we’re starting the process of reintegrating him into public school.

Putting aside entirely the challenges around designing an IEP, the biggest hurdle has to be acknowledging his disability.  For a long time, I think we tried to pretend that it wasn’t there, or at least, that it wasn’t as bad as it could have been.  A minor hurdle, a challenge, but hey, every kid has challenges, right? 

When we looked at putting Sam into a regular classroom, the reality that he is blind came crashing down on us.  In addition to all of the technology that he’ll need to access the curriculum, we also ordered him a cane to give a visual cue to those around him that he couldn’t see as well as you might expect.  Because blindness really is an invisible (oh the irony) disability, one of the challenges is expectations of those around us.  

Sam has been very slowly starting to use the cane out in public.  He doesn’t technically NEED it, because he’s been existing like this for the past three years, but it does help, especially in a setting where the lighting is low.  A Purim costume and dance party is a good example of where a cane would come in handy.  And when he first said he wanted to go as a blind kid, I was initially taken aback.  My knee jerk reaction is that he’s not a “blind kid.”  And while yes, he’s visually impaired, he wanted to go, bring his cane, get some dark sunglasses and just go as that – a blind kid.

Once I wrapped my head around it, I said it was a great idea.  Because it is. Sam is a “blind kid.”  It’s his disability, his life, and this was a way to experiment with going out in public embracing that identity.  I’m not going to pretend that it wasn’t hard.  On some level, I don’t think I’ll ever stop grieving the loss of his sight, the loss of the ability to walk around without a cane.  And when I saw him walking over to the refreshment table on his own, using the cane to knock the balloons that were on the floor out of his way, I asked my older daughter to keep an eye on him and went into the bathroom and cried. 

Because the grief is real, and watching him grow and own his disability is incredibly complicated.  I’m proud and devastated all at the same time.  He’ll be thirteen this year, and his bat mitzvah is rapidly approaching.  I’ve always loved the idea of acknowledging this time in a young adults life, recognizing the increasing responsibilities, not just on a religious but also on a community level.  As a parent, it’s important for me to acknowledge that it’s no longer up to me to manage Sam’s vision loss.  Dealing with his disability is something Sam will have to do for the rest of his life, and he’s doing a much better job of it than I am.  For Sam, he’s coming of age not just chronologically, but also coming to accept his vision loss, to make the accommodations he needs, to ask for the help, and to know that he’ll find his way, even if he can’t see as well. 

Mar 07

Too much

There are days when the world wants too much from me.  When motherhood demands more than I have to give, and all I can do it toddle along, hoping I’m not dropping too many things.

Jessie is sixteen, in the throes of college prep and agonies over sophomore year.  Too many classes, too much homework, too many commitments and too much angst.  I know that she needs perspective, I know that she needs to step back, recognize her choices and the consequences, and be okay with those decisions, but part of her likes the stress – and so she continues to put herself in this place, because the stress is part of the process for her.  She can’t see it, and the stress is real and huge and overwhelming and all I can do is try and say the right thing and hope that she doesn’t melt down entirely.

Sam, oh my Sammy.  The IEP process is brutal, unbelievably draining and exhausting and the worst reality that I’m facing is that in order to get what I need for him, I need to relive the worst moments of my life, of his life, over and over again.  Because when I get vulnerable, when I break down and sob, when I force them to see this child in front of them and what he’s been thru and why I need what I need for him – that’s when I get results.   But it’s awful and horrible and draining and I’m worn out.  And all of that is happening before I tackle on dealing with a kid who’s struggling to learn a completely new way of reading and writing.

Julie, my Julie.  She’s the only one who hasn’t demanded too much of me today – and of course, all that means is that I’m feeling guilty because she hasn’t had enough of me.  Did I pay enough attention, did I make her feel left out and lost?

I’m worn out today.  It’s all been way too much, too much emotion, not enough time or energy or answers.  Too much laundry, too many dishes, too much of not being able to get it all done.

Tomorrow will be better.  I hope.

 

Jan 28

Thoughts on turning 45

It looks different than I thought it would.  I don’t know that I had a lot of ideas about what my mid-forties would be like when I was younger, but I know that it feels differently than I thought it would.
Forty five is scared.  Not all the time, and not overwhelmingly, but it’s a pervasive feeling, just under the surface.  I know how quickly a sunny afternoon can turn into a tragedy.  How your world can change so fast, and suddenly you’re in a new place, with challenges you’ve never even heard of, let alone faced before.  I’ve been through some things.  I’ve seen other people go through things.  I’ve lost friends, I’ve had friends lose their parents.  I know tragedy is out there, waiting.
There’s also a knowledge that goes along with experience, a wisdom in knowing how lucky you are, and also in knowing that luck is capricious.  My son was talking about the scar on his nose last night, from the accident he was in a few  years ago.  It hit me, again, that if the glass had hit his face an inch to the left or the right, he might have lost his eye.  If he had hit the car a few inches lower, the damage done to his chin might have broken his neck. I’ve got a daughter with celiac disease, an auto immune disorder with terrifying consequences, but it’s a disease that can be completely controlled by diet.  Everything could be so much worse.  Everything could still get so much worse.  Knowing how fortunate I’ve been doesn’t make me feel more secure, it just makes me aware of how it really is just a roll of the dice.
Forty five is midway for me.  I don’t mean that I plan on dying at 90 (although that doesn’t sound bad) but I’m about halfway through raising my kids.  Sixteen years in, and at least another decade in front of me.  I’m not done by any description but my days of packing a diaper bag and arranging my days around naptime are over.  I worry about peer pressure these days, societal pressure to get the best grades, to take the hardest classes.  I worry about college and IEPs and dating.  I worry about letting them out into the world today, to make their own choices, to sink or swim.  I want to keep them safe at home, wrapped in bubble wrap and protected, but know I can’t.
I’m more secure in my own identity, I don’t worry about fitting into anyone else’s definition of what my life should be like.  As a Jewish convert, I spent a long time trying to do everything “right,” even when it felt like I was denying a part of myself.  I’ve learned to accept my Judaism as is, and to know that it’s sufficient in and of itself.  Am I a perfect Jew?  I know that I’m not, but I also know that nobody is. I put up my Christmas tree and light my Shabbat candles and do my best to ignore the implied judgement.  I’ve learned to step back, to let my children experiment with belief and practice and to know that all I can do is model the behavior.
Forty five is settled into marriage, with a man that loves me absolutely.  It’s knowing that we’re together in a way that I didn’t know was possible.  I was raised by a single mom, I thought that was the way things were supposed to be.  I didn’t expect to be here, 45 and happily married, in a partnership that’s as strong and as vital as it’s ever been.  I’m still not used to it, and at this point, I suppose that I’ll always feel as though my marriage is serendipitous and one of the nicest surprises of my life so far.
I didn’t get the career accolades I would have supposed, the glamorous writing lifestyle.  I spend my days homeschooling and ferrying kids around, walking the dog and battling the never ending pile of laundry. Grocery shopping.  So much grocery shopping.  It’s contentment and focus and piles of library books and kids who are growing up so much faster than I’d like.
Forty five is lovely, in the end.  Yes, it’s scared but aware the blessings received, the bullets dodged.  It’s knowing that while tragedy is waiting, always, a life is built around connections and traditions, intentionality and surprises.  Forty five is old enough to be grateful, to be cautiously optimistic, and to always, always know how incredibly lucky you are.

 

Dec 18

Adventures in Legal Blindness

Nobody wants to hear that her child is legally blind.

Which is part of my problem, I don’t like the fact that he’s visually impaired.  I haven’t come to terms with the reality of it.  I still think, on some level that I know damn well is completely irrational, that if he isn’t labeled as legally blind – he isn’t blind.

Sam was classified as legally blind after the accident.  After the first year, his vision had improved to the point where he wasn’t legally blind, but still significantly visually impaired.  Because we are homeschooling, it was easy to kind of gloss over the reality.  I didn’t have to face that he couldn’t survive in a regular classroom, because I read everything to him.  I didn’t have to deal with the reality that he couldn’t see well enough to write anything – because I’d just do the writing for him.

Then we started the IEP process.  The TVI discovered pockets of blindness in his central vision, which changes things.  On a bunch of different levels, because it raises the idea that he might have cortical visual impairment, which may or may not be something that we can work with – meaning it might be possible for his vision to improve.  Or not.  Nobody seems to know the answer, and it’s not clear to me that it’s worth figuring out.  His score on the CVI scale is the highest you can get while still registering, and I don’t know that it’s worth putting him thru the amount of testing he’d have to do.

But either way – it looks like he does need to be classified as legally blind.

Only it turns out that he was never, in fact, removed from the registry.  So he’s been legally blind all along.  Or as my grandfather used to say (for reasons I can’t fathom now) – he’s blind in one eye and can’t see out of the other.  Which used to be funny – until it was suddenly a perfect description of my son.

There’s nothing about this I like.  Nothing is good about having to explain to my son that he is legally blind, and he won’t be able to get a drivers license.  His doctor and therapist both recommended that we keep it loose, flexible.  Explain that a lot can happen in the next few years – medical advances, his brain can find work arounds – it’s possible that he might be able to drive.  Maybe.  There’s self driving cars too – and lots of kids don’t bother getting a license at all, they just uber everywhere.

But every last little bit of this sucks, and I hate it.

My son is the bravest, sweetest, kindest kid in the world, and he somehow manages to accept the unthinkable, to adjust to the disability and make it okay, and it breaks my heart and makes me unbelievably proud at the same time.

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.

 

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