I have not been ignoring you but my blog has been broken and giving error messages every time I try to write, but I think maybe it’s fixed? I guess we’ll see if this goes through.
I’m too tired to be entirely cohesive or funny but I wanted you to know that Hailey is home from the hospital (YAY!) and feeling much better. They still have lingering headaches and their eye became crossed from a 6th cranial nerve palsy (aka “wonky eye”) that basically just meant that they had so much spinal fluid pressure from the meningitis that it fucked up their eye. The drs think that it might fix itself with time but for now H has to wear an eyepatch and switch it every 4 hours to try to build the eye back up and we plan on covering one with rhinestones as soon as we are slightly less exhausted. Still lots of therapy and drs appointments ahead but I’m just so happy to have them home.
Hailey: “Hot gay pirate summer can commence!”
We still don’t know what caused it but they ruled out a million things after the spinal tap, including typhus and rickets…WHICH IS CRAZY THAT THOSE ARE EVEN A THING ANYMORE. At a certain point I was thinking they were going to start testing Hailey for “wandering womb” and “too many novels” but eventually they just classified it as “cryptogenic meningitis” which sounds like something you’d get from bigfoot but apparently just means “We don’t know what the fuck this was and we are giving up and would like you to go away.”
This week is a lot of work, follow-ups, medical stuff and another endoscopy to make sure my cancer is staying lazy and I felt like I was doing really well until Victor said he was worried about me and that he wanted me to go with him to Vegas this weekend so I can get away and just rest in the room and I had a panic attack just thinking about leaving Hailey even though they are fine, and I suspect this is a little ptsd and a sign that I absolutely need to get away or that I will never leave Hailey’s sight for the next 10 years. One or the other. That sentence was too long but I am too tired to fix it so instead of rewriting it I am going to go sit outside and breathe deeply for a few minutes.
Thank you for listening and being there. It meant a lot. It still does.
Sending you and the family tons of love, good vibes, and deep breaths. ❤️❤️❤️
I’m glad they’re doing better. Go to Vegas. Unwind for a bit, and order lots of room service. Love!
Sending love from California! Take that time away, even if all you do is stay in that room and hide instead of hiding in your own room. The change of scenery, no matter how small, might be exactly what you need.
I’ll deliver you food if you come to Vegas. No, I don’t work for DoorDash. I just live here and understand not actually wanting to leave your room.
Hang in there! We love you!
So glad they are doing better, love the rhinestone idea! Love so much that Victor has your back. I had a crazy (stressful) couple of weeks, so I am overjoyed to read your blogs and reread the older ones( Knock, knock motherfcker) sending love and light y’alls way.
Great to hear that Hailey is home. Happy dance 😀
You deserve to get away and have quality time with Victor but mostly for yourself. Breathe deep to replenish your soul. You need this. Give yourself permission, it is okay. ❤️ Love you 😘
I’m sorry to hear about Hailey! As a Mom, I can totally relate to not wanting to leave them. Enjoy your R & R. Sending light, love, and imaginary chocolates!
Glad the blog seems to be fixed! Getting away for the weekend sounds fantastic. Take Victor up on it! Big hugs. Still sending healing vibes for Hailey!
You need vegas. Listen to Victor. And cat hugs. Lots of cat hugs. Xoxo
I am so with you on all of this. I read the post and thought…oh this is me except for different underlying reasons though being the parent of an adultish child is involved. I’m not alone in my misery. Phew!
Bless you. You feel so helpless when it’s your kid. They are a trooper and so are you. Time to take a moment for yourself.
A Mom/Grandma/worrier here. I know you don’t want to leave Haley, but they need you to be ok too. Go to Vegas. Unwind a bit. Love you both
I’m so glad they are home and doing better.
I hope you all are able to start to relax a little soon.
HUGS HUGS HUGS
Thanks for the update. You’ve all been through a lot. Do what feels right to you, but Hailey can FT you if you go to Vegas. They’re tough like their Mama!
So, so glad Hailey is on the mend! And I totally get that feeling of never being away from them again. Take deep breaths, make sure they’ve got someone responsible on speed dial, and go to Vegas. Also, I need to see Gay Pirate Summer merch! But not until you have rested well. Can’t wait for the rhinestone patch!
So glad they’re home and doing much better. If Hailey is cool with you going, you should go! A bag of books to read in a hotel room away from the world sounds magical to me. It sounds like you have a great tribe of support that can be there for Hailey…Just be Jenny for a minute.
Sending you lots of hugs and love. It sounds like it’s been terrifying and I hope you all get the rest and break you deserve!
Listen to Victor. And give Hailey space.
Thank goodness Hailey is home, what a scary ordeal!! Victor is right, (omg can’t believe I said that) you need to get away and take a break!!
Sending love and virtual hugs for healing for both of you!! 😘
Thank you for the update! You and Hailey have a lot of people in your corner.
So happy Hailey is home and on the mend! They are rocking that eye patch! Continuing to send love to you all. Your online community of wonderful weirdos loves you so much and we’re always here for you!
Book rec for Hailey while they’re enjoying hot gay pirate summer:
The Unlikely Pursuit of Mary Bennet by Lindz Macleod.
Formerly awkward, piano-playing middle sister Mary (from Pride and Prejudice), now all grown up and a true bluestocking visits Lizzie’s best friend Charlotte Lucas Collins, now widowed. Sparks fly. It’s lovely.
Thank you for taking the time to update us. Much love to you, Hailey and Victor – hope you can all rest and recover.
Something very similar happened to my kid but they never found out what it was. A pulmonologist came into the room on day 4 and said, “WHY AREN’T YOU GETTING BETTER?” When she was finally discharged, there was no formal diagnosis. Just a paragraph describing what happened to her. I rode down in the elevator with the main doctor (Dr. Bowtie) and he told me he’d never seen anything like it. I said “Thanks?”
It’s been almost 10 years, and my kid is doing great. She had a few leftover things from her illness, but 90% of it is resolved now, and she can live a great life even with the other 10%.
Glad things are on the upswing. Hang in there.
I am going to go sit outside and breathe deeply for a few minutes….Excellent activity! Appreciate your updates. Thank you.
So glad Hailey is doing better. No lie, medical PTSD is real! (I’m sure you know that already). Go to Vegas if you can. Sending hugs for everyone!
Even as a worried mom you’re the best!!
Greetings! May the rest of your summer be free of negativity and nonsense.
🤘🌱💙
I meant to add to my last comment that you deserve all the peace in the world. But yeah phone WordPress sucks arse.
Healing vibes to you and Hailey.💚 And belated happy anniversary to you and Victor💙
Remember, Hailey got all the morphine – you need help, too!
Is there someone you trust to stay with her? Your mom? Is her partner/sweetheart still in the picture? MYOB?
Victor is priceless and his advice is spot on. But maybe not crazy frenetic Vegas? Possibly somewhere near the ocean (if you find that soothing) or a trip to whatever your ‘happy place’ looks like.
Unicorns optional . . .
I’m grateful to hear that they are on the mend. Thanks for sharing that info.
Now it’s time to take care of the caregivers (Victor needs a change of scene, too) <3
I’m so glad Hailey is getting better and your cancer is still lazy!
Hailey has their furry family members keeping them company, and an eye patch to decorate, and they can FaceTime you whenever they need you, or you need them.
Curl up in a ball and order food in bed in Vegas and you’ll make everyone feel a little better.
Parent stress is a given when adult babies get ill, but spousal stress is important too, and Hailey and Victor will feel better if you are taking good care of your mental health and physical health. If Mama is okay, then everybody is feeling better.
Sending positive vibes to you and your tribe!
Have them rechecked for all of the viral causes in about 6 months. They couldn’t find the cause the first time I had viral meningitis, and the second time I ended up in the hospital would have been totally preventable if I had gotten rechecked.
I’m so relieved for you I started crying. So. There you go. I hope you get to stay in a really nice room.
God Bless you and Hailey. A concerned reader
I am sending you SO MUCH LOVE. I wouldn’t want to leave either but you definitely need room service!
I’m so glad that H is home and mending. Nothing trips the fear switch like a sick kid. Vegas sounds amazing. Here’s to hotel room trash TV and room service!
SENDING MY VERY BEST TO YOU GUYS. That includes love.
My mom’s heart says going to Vegas would just cause you more stress right now.
Leaving Hailey right now would probably be hard for your precious Mama’s heart.
I’m going to go against the popular vote here and say…..
Wait and go in a couple weeks on a little get away.
But, hey….you know your limits!
Do what works best for you. 😉
Sending so much love and good thoughts for a speedy recovery for them! 💕💕💕
We love you no matter what.
Sending tons of love
I’m sending happy, fun thoughts your way (and Hailey, too). Rest and relax, but feel free to,do it at home. I always get anxious when I’m away from home.
Sending all the hugs and love!💜💜
My friend from HS makes dragon eye patched.
https://www.etsy.com/shop/CraftyHalfling?section_id=52166435&order=date_desc&utm_source=boe&utm_medium=android&utm_campaign=O62e91-dTH2cp4-wrxWr5w&utm_content=Eye%20Patches
Sending you so much love. I hope you get some respite time and that Hailey gets better as fast as possible.
Love
Love
Love
…to you both.
All three, actually.
And of course to your wonderful creatures.
From Camano Island, WA
Although Las Vegas is one of the LAST places I’d go to relax, do what you need to to disconnect for a while. You can facetime with Hailey from your hotel. Or you can stay home and live-face with them (and Squerrely Jackson, Dorothy Barker, Hunter S. Thomcat, and the rest of the delightful menagerie. xoxo
💗
For a little while, I felt like I’d never sleep again after my oldest had an “idiopathic focal seizure” 4 years ago. He’s been fully asymptomatic since then. I still go into a mild panic when he gets a headache. Big, squeezy, hug from me to you.
They need a stuffed pirate for their shoulder, or you are doing this ALL WRONG.
Glad things are going better. How terrifying!
I wouldn’t leave this soon either. Give yourself a break and plan a weekend away for 8-12 weeks from now. Close! But not so close as to induce panic.
So happy to hear she’s home.
So so so glad Haley is on the mend and I’m suddenly excited for the myriad possibilities of stylish eyepatch adornments. It also lends them an air of MYSTERY. Speaking of wandering womb, you guys should chill on the couch and watch Miss Fisher’s Murder Mysteries together. ((hugs))
Happy Hailey is home!! Now go to Vegas, visit Beer Zombies Brewing, and try to relax ♡
Hang in there. Glad you are all still here 🙂 Hugs from Indiana
Could you compromise? You go to Vegas while Hailey has a (responsible) friend stay with her. Then they are both home alone in case of an emergency (or the need for a 1am ice cream hits). You get some rest and hopefully less worrying for a few days.
Damn, Jenny… “the world is too much with us” or maybe just too much. I hope Hailey’s healing continues well, and it will. They are yours, after all. I may not have your strength and courage but i hold you in my dark heart with love.
Yes it went through, and I like the idea above of having someone stay with Hailey or set up a check-in schedule to see if that will quiet the waves of your anxiety
Go to Las Vegas. Hailey will be fine. You need the break.
Sending lots of love and and healthy thoughts to you and your family. Thank you for being you, Jenny! 😘
Vegas bed rest always works. For you! No
Progress is progress. Glad that H is home and you all can be more relaxed at home.
So glad you have this decision to make. You can’t go wrong either way. Sending love and prayers.
I’ve been through something similar with my daughter. Because the doctors couldn’t figure out what was wrong with her, they decided she was crazy and gave her a conversion diagnosis. We had to go to four different hospitals (even across state lines!?!) to get the closest thing to a diagnosis possible but it was enough to give us a roadmap to help her get better. Now, I have a whole section of my closet dedicated to hospital clothes. Point of all this rambling being, you do you. I firmly believe that you should stay at home if that makes you more “comfortable” or go to Vegas if that’s what you need. Just my two cents from someone with a stash of hospital couture. Whatever you decide, it will be the right thing. Sending lots of love and hugs for you and your family.
Sending you all love and rest. 💜
Do what makes you happy. Sending hugs! 🤗
Rickets is still a thing? I’m off to Google more infos. I mean tb is still a thing (John Green told me) so I guess it’s not crazy shocking. But meningitis! Eeep. How scary for you and your whole family!
I am here for gay pirate summer and so glad you have your beloved kid home and safe!!
I’m glad Hailey is okay – and love the idea of gay pirate Summer! Hope you get rest and comfort this weekend however that ends up looking for you (in Vegas or at home). Take care ❤️
Sending you and Hailey love and all the healing thoughts! So happy they are home. And fuck whatever was the matter with them! And I’d be worried if you didn’t have PTSD from this. Victor might be right about a Vegas weekend. But can Hailey’s sweetheart please come stay with them so you don’t have to worry?
Only you and your family could come up with Hot Gay Pirate Summer as a thing while convalescing from a scary hospital stay. Whatever you do, Jenny, it will be the right thing. Sending jedi hugs to you, Hailey, and Victor and scritches to all the fur kids who are cleary taking their nursing duties Very Seriously. 💜
I had the same PTSD about letting my mom resume normal activities out of my line of sight after a harrowing 10 month health crisis. She’s truly fine now and I’m getting better at letting her live her life as an adult woman lol. Sending love to you and your family!
I get pleurisy when I get sick with something like bronchitis.
I was like, ARE YOU FUCKING KIDDING ME? I’m pretty sure that’s something from the 1800’s OR you have to be at least in your 90’s to qualify.
Good luck you got this and come on going to Vegas it’s a vacation in a other world just look out of your window to see the free show the spectacle of the inhabitants of the great Las Vegas strip. Bon voyage and enjoy 😙😘
Love you. Do the thing. Go rest. Gotta take care of yourself so you can take care of H.
So glad to hear your news. I understand not wanting to let Hailey out of your sight – that cryptogenic meningitis was very scary. Wishing all your medical stuff goes well for you.
Sending so much love and healing energy to your family.
Rhinestones are fun but a big giant googly eye stuck on is even more fun 🤪
Breath….. LOVE & LIGHT <3
Take care…glad they are getting better.
It was 108F in Vegas today. Do not recommend.
*ALL THE HUGS* But yes, there really are weird diseases where you can’t actually prove that someone actually has something but rather the symptoms make up the diagnosis – Ankylosing spondylitis is another one. Bodies are weird.
REALLY good to read this from you. And yes, some quiet time with Victor is in order. Moving and Hailey and Texas flooding just off the top of my head. Both of you need the break.
Glad Hailey is on the road to recovery! I hope everyone gets rest. Best wishes for good health!
Happy to hear the update!! I agree with Victoria that you should go to Vegas with him and rest. Room service, send him to get treats and the like. ❤️
I do the same thing with my daughter. I hate leaving her.
oh man/woman….what a journey. Happy she is Home and on the mend….yes, rhinestones on the patch 🙂
So happy they are doing better. If you don’t go to Vegas, at least get some rest! (For you and Hailey). Sending love ❤️
Sending you all the love and support you can handle. Go to Vegas and find all the weird stuff and then tell us about it later ❤️ oh yeah, and relax and stuff too. The worrying about your kids never goes away, so you may as well worry in Vegas with Victor 🫂💕🥰
Whoah, that is all bloody scary, but having a rest is super important cos these things are a marathon, not a sprint,
You should add googly eyes to the eye patch! Just get a bag of assorted sizes and hot glue them on randomly.
I’m glad to hear”see”
You and Hailey again.
Huzzah!! I’m so glad Hailey is back home and on the mend! DO go to Vegas and hit your reset button–it will do you (and Hailey) good!
I’m laughing at both the dragon eyepatch, and the googly eyes idea! I think Hailey would be pleased, especially if they could also breathe fire.
If you decide to shift hidey-holes to Vegas, there’s a wild bathroom quest I can give you. It’s on a top-floor event space/lounge area of the Club Wyndham Desert Blue. Looking north off the lounge is a Vegas vista, but the south-facing ladies (or gender-neutral, when I was there) room had enclosed toilet stalls where the potty faces a glass vista window, and you can pee on Vegas. Or at least while staring at Vegas. It’s very freeing. Absolutely worth sneaking up there.
I had the eye/nerve thing! They classified it as a TSI (stroke). I wasn’t told to switch eyes with the eyepatch – just that it ‘might’ get better and would take approximately three months. Not allowed to drive. I got lots of funny looks from small children in the shops as I was also wearing a turban headscarf (due to no hair from cancer treatment).
It DID resolve after three months!
Also, cancer now gone, hair grew back white at first, but now back to its normal greying brown colour. Happy ending all round.
I can feel the overwhelm of everything in your words. I hope you are all able to rest and take care of yourselves/each other as much as possible <3 <3 <3
Hugs, Jenny. Hugs hugs hugs. You have been through a lot. So glad they are home. Good healing to them, good soothing to your nervous system. Thinking of you. I think you would like this squirrel feeder: https://mcphee.com/products/gnome-squirrel-feeder
Not living your life, I would never venture an opinion about whether to go to Vegas or not, but please do whatever you need to do to take care of yourself. Go with Victor, stay with Hailey, get a room by yourself {until Victor can meet up with you} in a nearby hotel to decompress while staying near Hailey, whatever option makes you most comfortable. There is so much happening. Moving is one of the top stressors for people. And that is just the tip of your iceberg. I am so relieved that you were able to update your extended family via the Bloggess, but we will all understand if you need to take those breaks while everything starts to settle. And if we hear back from you tomorrow, that is understandable, too. The one thing that you can find grounding is that you have a lot of people sending so much good toward your whole family, which only starts to replace all the good you have sent to us.
Vegas baby!
Sending Hailey and all of you all the love ❤️
*hugs*
Oy. Sending love.
I’m so glad things are trending better!
If either of you need some books for the hot gay pirate summer, I can recommend Mackenzie Lee! But you probably already know about those. 🙂
“crypto” = unknown, “genic” = origin
Tell Hailey they got sick from a cryptid!
I’m so glad that they are home and that Dottie & the kitties are helping them heal. <3
❤️
So good to see Hailey home! I hope you get away and rest and restore. I’m so sorry you’ve got so much on your plate and marvel at your strength. AND, am beyond grateful for your humor. It’s a gift to us all and I can’t help but wonder if you would still be in the world if it hadn’t been such a big part of who you are…🙁
At least Hailey looks way cool and has all the animals in attendance! Good luck with all that’s going on…..
What a roller coaster! I’m hoping it all smoothes out soon.
So glad Hailey is doing better. Definitely need some bling on the eye patch. Many Jedi hugs to you all.
Once you birth a baby, you are a momma forever. And ever. And probably longer than that. I’m very happy Hailey is improving! Prayer, food vibes, the powers that be, whatever you want to call it do work. For goodness sake remember to drink water! Everyone! It’s amazing how much you can benefit from simply drinking water.
Things are always going to happen Jenny, and you keep surviving them – often with humor and grace. I believe this is such an advantage for you!
I’m happy that Hailey is out of the hospital, that’s got to be a huge relief!
We always have your back Jenny. I’m so glad that Hailey is doing better. We are one. Hugs.
Dearest Jenny, I’m thinking that the best thing you can do for Hailey now is take care of yourself (or let Victor take care of you). Go to Vegas and know that all our love goes with you. Down time after such a harrowing experience is a really good idea.
Ask Hailey what they are comfortable with, and then if they say they are fine and you should go… believe and trust them. And if they say they would like you to stay, then they still need a little reassurance. But trust them to say what they need. And trust Victor to care about you. They are both amazing.
I will always love you
Love the idea of a great big googly eye on the patch! The dragon patches were pretty awesome, too.
But in response to #52: why not a stuffed parrot to ride on her shoulder instead of a stuffed pirate? (unless Hunter S Thompcat would claim it/shred it).
I agree with asking Hailey and respecting their request.
Dear Jenny, do what you can to take care of yourself.
Listen to the cabin attendants – put on your own oxygen mask first
Or: Flip a coin: heads=Vegas / tails=stay home. Then assess how you feel when the coin lands . . . then you’ll know YOUR truth.
Either way, we’re with you all the way.
Sending lots of spoons and lots of love,
Susan
You have way too much on your plate (even doubly so), and still manage to post here. You are amazing.
Sending much love. Take care!
So relieved and happy Hailey is doing better!
If you come to Vegas (and I hope you do, so you can rest) I am offering up free kitten snuggles. I will come pick you up, bring you to our home where we have 4 month old Bengal Maine Coon kittens, let you snuggle all you want while supplying you with whatever refreshments you may like, and then deposit you back to your hotel when you are done. We are not creepy, or murdery, just a bit odd, perhaps, but who isn’t? We just know the healing power of kittens. 🙂
Very glad Haley is improving, and hope you’re getting some relief from parental worry, though it never goes away. Just sayin’…
Get plenty of rest (is that even possible?) and try to let the fear go. I don’t typically “speak for everyone”, but we love you and have your back, to the extent we can.
Thank you for sharing your journey.
You need a break, Mama! They are healing at home and now you need some healing for yourself. I am so happy that Hailey is home and things are beginning to get better. ❤️❤️
Sending you all lots of love! I vote Vegas Baby! Seeing a show, visiting the sign grave yard or other silly things might help distract you. Laughter will be good for both of you. Just my opinion ❤️
Dang, you’ve had quite a month (year, decade…). A break isn’t necessarily time off but rather a change of scenery. Maybe it doesn’t have to be so far away if it makes you panicky. You could visit a place you’ve never been but that’s less than two hours away like the ocean or Canyon Lake? Or Barney Smith’s Toilet Seat Art Museum? I’m sure between you and Victor, you’ll a solution! Sending good juju.
In this instance, I think Vegas would be a choice for the greater good. You have rocked taking care of Hailey and I think they would want you to be good to yourself for a bit, unwind, recharge and all that jazz. Also, the two of you would eventually drive each other mad if you are attached at the hip for eternity. 🥴
Hope you & Hailey keep on keepin ‘ on and may you both have great health and happiness! Sending ❤️
Its ALWAYS eye patch season. Hang in their Lawson Gang.
Sending love ❤️ glad Hailey is on the mend
Forget the googly eyes until you ask your father if he has a spare glass taxidermy eye that can be attached to the eye patch (off center, of course)
Please give Hailey a big hug from me!
Please tell Hailey it should probably be a rhinestone evil eye!
I’ve got the same cancer, callou callay. I had about a year of lanreotide. I’ve had through a bunch of endoscopies and few gallium either or copper scans, and now it’s in remission. There was some discussion about having my stomach removed. I said it took over ten years to get this diagnosis, and now I finally feel better. I want to go with quality rather than quantity. Oddly enough, the fortune cookie I got at dinner said the same thing. Best of luck to your wonderful family.
I know this sounds crazy, but did they test for rabies? After a dog scratch scare, I read WAY TOO MUCH about signs and symptoms and meningitis can be one of the signs. Apparently it is not a 100% death sentence anymore (YAY!!!, it is treatable if caught) and there may actually be more cases than anyone knows about because the people never felt a bite (probably from bats) and their body fought it off on its own with no testing ever done.
So so glad Hailey is doing better!!! Like a lot of your readers, I kept checking your site and hoping to hear they were recovering. It makes my day to know they are.
Love you! Hang in there and take care of yourself!
Sending love to you, Hailey, and Victor!
GOOD ARTICLE
SAD
Hubby had a weird viral meningitis a few years ago (actually the summer that COVID hit now that I think about it). Was in the hospital for 5 days and then on IV anti-viral meds for 6 weeks afterwards. He is ok now but it really scared us. Doctors say it would never happen again but its hard not knowing the exact cause. We just make sure that he doesn’t let himself get too worn out. Positive vibes headed your way.
I’m so glad that they’re on the mend and that you’re doing okay and hope that your cancer stays lazy. I was so confused why Victor thought VEGAS would help you until reading the part about staying in the hotel room and now I’m on board. I hope you went and that if helped.
Dearest Jenny,
I love you a lot even though I don’t know you. I have felt SO many times that you understand the pain I’m going through so now I want to be there for you. I’m holding you and your family in my heart and sending healing karma to all of you!