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May 04

Mondays

It wasn’t a good day.

I struggle with Julianna’s anxiety. When she gets anxious, she shuts down, withdraws and wants to be alone. And it kills me. It breaks my heart that she’s alone with it, and I want so badly to comfort her and help her and let her know that she’s not alone. I don’t know how to handle her anxiety. I understood Jessie’s temper tantrums that, looking back now, were coming from a place of anxiety. I understood Sam’s anxiety, and his panic attacks. They needed me beside them, telling them that I was there, that I was with them, I was on their side, I would be right there and they weren’t alone. Julie wants me far away when she’s anxious and it hurts and it makes me worry that much more.

Plus there was just a lot of other things going on yesterday. Sam’s finally starting to get services for being visually impaired, but it involves a LOT of talking and discussion and arranging. Jessie needs a heart monitor for two weeks, and that’s probably nothing but it freaks me out anyway. Because the idea that it might not be nothing is terrifying.

It was just a big parenting day – it felt like all of the kids needed a lot of administration and parenting. Jessie and I are navigating new territory, finding ways for me to step back and her to step up – and it’s more complicated because she’s asking to step up on things that most kids her age don’t have to deal with, like getting accommodations for celiac disease and arranging for a heart monitor with two different medical companies. That’s hard, emotionally and administratively. Sam is still finally feeling better, after years of feeling sick, and that’s so amazingly great, but also new and we’re feeling our way into what a healthy Sam is like. What does he want, what does he need? And Julie – she got slapped in the face with MCAS testing next week and completely withdrew. Literally. Went into my room, shut the door, cried, and refused to come out or talk to me for two hours.

It was just one of those days when I felt overwhelmed and inadequate all day – capped off with Marc refusing to allow me to move his tomato plant outside because I couldn’t be trusted to do it delicately enough.

And so it’s Tuesday, and I’m really, really hoping for a better day. I lobbied hard to opt her out of MCAS, and I’ll continue that fight today. I might not be able to – and maybe I shouldn’t. She took the two hours to melt down and panic, but had pulled herself together by mid-afternoon. We even worked out a bribe (lets call it a reward or incentive) of slime when she finishes up the week. I just need to get an emergency 504 in place – I had refused one when offered earlier because there was an opt out offered. Sam’s been up since three, so I sent him back to bed for a while, and Jessie’s hard at work. She’s got another four weeks until high school is over altogether.

Apr 01

Passover 2021

Passover takes on a different meaning when your son is diagnosed with celiac disease just before it starts. It’s not that it’s meaningless, because we had the Seder and it was lovely. But adding in Passover restrictions seems pointless when we’re grappling with a permanent dietary restriction that goes beyond matzoh – which isn’t gluten free.

And so our Passover observance this year was limited to just the Seder on the first night.

I’m trying to keep my head above water, and feeling overwhelmed and on the edge of drowning. Jessie’s getting college decisions, and she’s gotten accepted or waitlisted at half of the colleges she’s applied to – she’s also gotten rejections at some she didn’t expect. Getting waitlisted at Smith was hard, and then rejected soon after by Tufts and Vassar didn’t help. But she did get accepted to her dream college, with a fantastic financial aid package.

I think she’s struggling a little bit with the anticlimatic end of senior year. Plus all of the concerns around eating at college, paying for college (a fantastic financial aid package doesn’t mean full boat), getting ready for college, etc. So that’s hard.

Sam is still not doing great. Overall, better than he was, but he was starting at such a low point. It’s discouraging to both of us that he isn’t magically better. I want magic. We’re meeting with a dietician next Wednesday, and I think that’ll help him feel more empowered and more in control. Mainly, I just want him to feel better – no pain. It doesn’t seem like a big ask, but…

My Julie – TECCA is not going well with her. She hates it, and constantly ends up in this situation where she’s fallen a day or two behind, and then is panicking to catch up. I don’t mind her falling a bit behind, but the panic and anxiety are awful for her. And getting her to understand that the choice to delay doing the work is going to cause the work to build up, and cause more panic and anxiety… it’s a battle. Just a battle, and I hate watching her go through it. We had one melt down earlier, and she seems calmer, more relaxed. I just have convince her that I’m on her side, and not someone to fight.

Mar 26

Too much

Sam was diagnosed with celiac disease today.

It’s been eight months since he started vomiting daily. Two rounds of antibiotics, one endoscopy, multiple rounds of blood work, two allergists, one ENT doctor, two GI specialists, and a final round of tests that I asked for out of desperation. We got the bloodwork back two days ago, and I’ve made approximately 57,000 phone calls since it was drawn, begging for results, then begging for referrals and finally just begging for guidance because I knew that every bite of celiac was making him sicker.

After a long talk with his GI today, we concluded that it was entirely appropriate to diagnose celiac disease based on seralogical results, the genetic testing we had done after Jessie was diagnosed, a baseline negative celiac test two years ago, and eight months of excruciating belly pain.

I worried so much that it would be triggering for him. That he’d go back to that place, after the accident, when his food choices were so limited, and there were so few things that he could eat. But I think his dominant feeling is mainly one of relief. I didn’t realize how depressed he had been, because he never seemed sad. But he’s so much lighter somehow now. He spent virtually all day out in the living room with us. He still doesn’t feel great – but now he has a diagnosis, and hope that he won’t always feel terrible.

I didn’t realize, until I had to explain to multiple doctors and nurses over the past few days, how truly bad it had gotten. How Sam rarely left his room for long, because it was close to the bathroom. How long it had been since he felt “good.” And how incredibly draining and devastating it is to have him sick and not know why.

Mar 23

Five months and two weeks

Yeah – I’ve started the countdown.

We’re all preparing for Jessie to move out. She’s been accepted at 7 out of the 8 colleges who have announced acceptances so far, and at least two of them are currently contenders. And the financial aid is so much better than we had hoped.

She’s going to college.

Last night, she really wanted vanilla ice cream with peanut butter cups. I drove her to Dairy Queen to get it. Because I thought “five months and two weeks from now, I’m going to be happy that I drove my baby to get a treat when she really wanted it.” And this morning – when I started yelling the countdown (I loudly announce the time at 7:00, 7:10, 7:15 and finally 7:20) until she staggers out of bed to get to online class at 7:22 – instead of being aggravated that she doesn’t wake up on her own, I realized that I’ve got another two months and two weeks until I’m done with that entirely for her.

I’m processing the missing her, the recognizing the gravity of the milestone. Hoping that if I just feel it, if I let it wash over me and don’t fight it, that somehow it’ll be easier when the time comes.

Mar 01

This isn’t going well

I’ve got one kid who’s basically hiding in my bedroom 24/7, staring at her phone and refusing to do schoolwork. Another one who’s fine with school, up to date with everything, but constantly anxious, he just doesn’t know why. And another one who, with three months until the end of senior year, is breaking down over her phone’s inability to load photos onto google classroom and pleading with the universe to somehow magically end this semester so she doesn’t have to do online school any more.

Oh – and my sister lost her sense of taste/smell, so I think we all have covid-19.

There are lots about the past year that I’ll look back on with gratitude. I know that. Lots of family togetherness, fun memories, etc. But cramming five people into one small apartment and cancelling almost everything they loved about their lives isn’t a recipe for success.

We just have to get thru March. Then April comes, and warmer weather and sunshine. More vaccines, and AP exam prep. The exams are in May, and everything gets easier for Jessie then. Julie just has to survive this semester, then I can put her back into public school and she can spend time with peers, have friends, etc. Sam… well, I think his life will get easier too, just because the overwhelming mood in the house won’t be of despair and misery.

It’s not all despair and misery. Just Monday – Thursday, really.

But I can’t wait until this part is over.

Feb 26

Recovering

There are some wounds you don’t heal from. Some blows that you just don’t move past or recover from. And that’s part of life, and it’s hard and it hurts and there are certain songs that will play and instantly bring me back to a part of my life that was so exquisitely painful that I instantly start sobbing.

It always takes me back to that place. And there are really only two songs that I respond to like that. One of them is Travis Tritt’s “It’s a Great Day to Be Alive” and the other one is Pat Benetar’s “Hit Me with Your Best Shot.” Neither artist is one I listen to on a regular basis, and those are the only songs I actually know.

“It’s a Great Day to Be Alive” played in the car on my way to see Marc, just after the miscarriage. It was playing when I drove past Fowler Junior High in Maynard, and once I heard it, I started crying so hard, I had to pull over because I couldn’t see well enough to drive. I was so sad, and couldn’t imagine ever feeling good again. I was missing the girl I used to be, the one who hadn’t lost her babies, the one who was just happy. Optimistic and ready for whatever. I couldn’t fathom how I’d get back to that place. Everything was dark and sad and awful. And even though it’s been almost twenty years, three kids, and a whole bunch of joy and contentment since then, all it takes is the opening chords to remind me of how much it hurt.

“Hit Me with Your Best Shot” is a song that puts me in a place of feeling like my kids are being attacked. It’s my cathartic song, the one I play when I need to muster up the strength to keep going. It’s celiac diagnoses and IEP meetings, it’s legally blind certifications and anxiety diagnoses. That’s the song I play when I need to grieve and be angry and feel like I need to fight. Like, we’re going to keep going, and get thru this even though it seems like things keep getting thrown at my kids over and over again.

Feb 23

Ready for Spring

I need warm weather. I need sunshine and bare feet and long walks and sunglasses.

Instead, I’ve got melty snow, mud all over the place and the walls are closing in on me. Jessie’s rapidly approaching burn out in school, Julie is STRUGGLING hard with online school and hates it (and me), and Sam’s allergies are taking over everything. Marc’s working a thousand hours a week, we’re down to one car because we have to replace the motor in his, and I’m so done with winter.

Ok. Life is tricky at time. And it’s important to note that none of these are REAL problems. The allergies, maybe. But even that, when you contrast it to excruciating pain and vision loss, isn’t that bad. There’s just a series of irritations that are building on each other, and it’s all compounded by the fact that we’re almost at a FULL YEAR of covid isolation.

Feb 20

Senior Spring

We aren’t there yet – we’re still stuck in the doldrums of winter. But spring is coming and there are little hints of it all around. For us, this year, it’s going to be senior spring. When Jessie finds out what colleges she gets into, what the financial aid packages are, and decides where she’s going to go.

She’s applied to 21 colleges/universities. And while that sounds crazy (and in retrospect, I don’t know that she would do it again), it’s happening and so there are a LOT of decisions coming up. We’ve already heard from UMass Lowell and Amherst, Simmons and Wheaton. And unofficially the College of the Holy Cross (because she’s a finalist for a merit scholarship). She’s gotten into all of them – and while I’m sure she won’t get into all 21 colleges, each one seems like such a huge accomplishment.

And each one takes her closer to growing up and out of my house.

I can rationally be thrilled for her, so proud of her, and excited about her future. I can rationally know that I absolutely want her to achieve all of her dreams and know that moving away is the only way to do that. I know that. I feel that.

But I’m also so incredibly emotional about this whole thing. The idea of her not being around is huge and hard and I’m feeling all the things about it.

She found out about Wheaton and UMass today – and it looks like Wheaton is giving her a TON of aid. I was so excited for her, but then went to hug Marc and burst into tears for a few quick minutes. It’s so real – she’s going to get enough financial aid to make this possible for her. Which I knew, intellectually, but still having it actually happen is… a lot.

It’s hard to articulate what I’m feeling. It boils down to I’m just feeling a lot. A lot of pride and love and hope and mourning the ending of one of the best parts of my life. It’s not that another stage isn’t starting with her, it’s not even the ending of the overarching time of raising children (because I’ve still got a 14 and 10 year old). But this time of raising my oldest is ending, and it’s a lot.

So I break down, periodically, and at odd times. I cry really hard for a few minutes, suck it up and move on. But today, when I started crying, Marc came over and hugged me, and Lizziebeth came running to be of service. Julie came in to hug me and Sam crouched down to put his cheek on mine, so I wouldn’t feel like all of my kids are growing up all at once.

Feb 12

Some days are harder than others

Don’t get me wrong, I know how much worse it can be. I know, even not taking all of the pandemic stress and fear and illness into account, how much harder it can be when a child is seriously in trouble, sick, hurt, injured, etc.

This isn’t that. Whatever is going on – it’s not a traumatic brain injury that’s going to lead to permanent disability. It’s not a mental health crisis that threatens to spiral out of control unless we somehow manage to do exactly the right thing – and nobody can tell us what that right thing is.

This is just general hardness.

Jessie is struggling with second semester of senior year, senioritis and an overwhelming amount of stress bubbling up from knowing that she still doesn’t know where she’s going to college and how she’s going to pay for it. Every day is ridiculous – the classes are either mind-numblingly stupid or so hard she can’t figure it out. And there’s no middle ground – she’s either twiddling her thumbs or banging her head against the wall.

Sam is still sick. Still throwing up, still has a sore throat, and still feels awful. He’s on the third week of antibiotics, and was up again all last night. I’m half out of my mind worrying about him, and half reminding myself that we’ve been here before and it’s always fine. We’ve got another appt with another specialist next Friday – and I’m hoping for better information on what we’re dealing with. Is it just the allergies? Could that be the root of all of his problems? God, I hope so – because maybe that way, we could figure out a way to fix it.

Julie – my poor Julie. She hates this. Hates remote school. I think TECCA is better for her than homeschooling and I think homeschooling was better for her than remote schooling – but regardless of how much better it is – it still sucks for her. This is just awful for her. Not all the time, and we’ll survive it – but I think both of us are really looking forward to getting her back into regular brick and mortar school.

Feb 06

Eighteen

I have no words.

Actually, I do. But I’m struggling. This feels like such a milestone birthday, even if it’s just a milestone for me. Jessie has told me repeatedly that I’m making it a much bigger deal than it needs to be – she’s much more focused on college, scholarships, graduation. Turning from seventeen to eighteen seems… inconsequential. To her.

For me – it feels life changing.

When you have a baby, you know you’ve got 18 years. 18 Christmases, 18 summers, 18 First Day of Schools. You’ve got 18 years that your child belongs to you. After that, it’s not that they’re gone. They’re just not yours anymore. Not entirely. They belong to themselves.

I’m ready for Jessie to take this next step. I’m wistful and emotional, but so ready for her to venture out into the world on her own. I’m just going to miss her so much.

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