Rough week

in Random Crap

It’s been a very rough week and I’m lightly exhausted so instead of writing a real post I’m just sharing the letter I sent everyone on my art substack. Sorry. Any week with spinal taps in it doesn’t count as a real week.

Hi friend,

I’m writing this from the hospital where I’ve been with Hailey this week. They aren’t sure what’s wrong with them. They thought viral meningitis and then bacterial meningitis and then back to viral and now they’re testing for West Nile and typhus which I didn’t even know was a thing anymore. I’m too tired to make much sense and I’ve been too distracted to draw so this week’s art is the piece I’ve been working on that isn’t finished.

Hailey is finally sleeping, thank goodness. The morphine is helping a little tonight. I have all sort of stories to share but I can’t concentrate and need to curl up on this impossibly comfortable hospital chair (that was sarcasm) and try to sleep. If you’d like to send positive thoughts or prayers I will 100% take them.

I stopped at home today to grab a shower and noticed that the roses in the front of the house were blooming. I’m not sure when they started but they’re lovely and a form of art themselves. It’s nice to know that even when I can’t create, the world is creating for me.

Sending love,

me

110 thoughts on “Rough week”

Read comments below or add one.

  1. You never stop being a parent. You figure once they’re out of the house, it gets easier, but that’s not always the case. Hang in there, Jenny!

  2. That’s awful, such uncommon scary possibilities of what’s happening. Hope the hospital discovers what’s ailing them, and that Hailey continues to rest comfortably in treatment and recovery

  3. The earth is sending pretty stuff to your family. We are sending positive healing energy

  4. I know there is nothing worse than having to watch your child go through something like this. You have an unimaginable number of people sending prayers, healing wishes, good vibes or whatever they believe will help to you, Hailey and Victor. I have to believe that will bring a good outcome. Rest when you can, take care of yourself as best you can and believe in the outpouring of love coming your way.

  8. Love you Jenny. Parents face many challenges, nothing compares to when a child is sick, be it 5 or 50.

    You have a community of love supporting you and praying for Hailey.

  10. Hailey being ill must be so incredibly scary; let’s hope they have a complete recovery SOON!

  11. All the good thoughts for you, Victor and Hailey. Sorry y’all have to do something so hard.

  12. Ah, man. Best thoughts to Hailey and hopes for a quick recovery – and I will be thinking of her, and you and Victor.

  15. Sending so much love and healing wishes! Is Hailey’s partner with them? Are they okay? ♥️♥️♥️♥️♥️

  16. My friend Kathleen had typhus. It was the same roller coaster you are currently on. She recovered with no issues. Me and my dogs are keeping good thoughts for your family.

  17. Prayers galore for you and Hailey🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼 and p.s. your “unfinished” art piece is more incredible than the rose 🌹

  20. Oh Jenny,

    What wonderful terror it is to be a parent. Rest as much of your anguish for Hailey and yourself on us. I’ll light a candle and send healing thoughts for your whole family.

  21. Being a mom when your baby is sick is hard, went through this with my son last year. Twelve days in the hospital infectious disease specialists couldn’t figure out what was wrong. Tough times the fact that he was 18 and I was no longer in control legally signing paperwork for what was next was the hardest. He made it through.
    You are a good mom and this will all bring you closer. Life can be messy but we are strong and don’t lose that sense of humor. Peace and always thinking of you and your family. Here’s to better times my friend. You have a good community here and we are all rooting for you. Try to get some much needed rest when you can mamma. Love!!

  24. Sending you a HUGE HUG, love and prayers. Remember to breathe. There are so many of us out here rooting for you and your family. Stay strong and please always remember you are loved. 🤗❤️

  28. You my dear have spoken words to comfort many due to your truthful sarcasm and vulnerability. Thank you keep writing. You touch many.

  31. They should be giving them gabapentin for neuropathic pain. You could ask for it. (I’m an NP, but also my friend had viral meningitis in January, and I asked them to prescribe it and it was helpful.)
    Also – monitor for anxiety and depression after they’re discharged. May not hit right away, but common after meningitis.

    Much love and healing to you all!

  32. Gosh, Jenny. Sending all the hugs. All the vibes. All the good stuff. To you, to Hailey, to the docs and nurses taking care of them.

  36. Sending all the hugs for you, Victor, and Hailey. I hope the doctors figure everything out soon so they can get on the mend quickly. ❤️

  39. Sending white light and positive thoughts to all of you. Wishing Hailey a speedy recovery.

  40. So hard. I hope you get answers soon. Having your child dangerously ill and in pain is just the worst, compounded by not knowing what’s wrong. I hope answers and recovery both come pronto.

  41. Sending love and positive thoughts for you and Hailey and Victor during this incredibly difficult time.
    You all have an awful lot on your plate, but you have a large community of supporters all over the world who are sending positive vibes your way to give you strength.

    Ask Hailey’s doctors to run all the tick borne illnesses from all over the world. We have a lot of ticks traveling with people as stowaways, and colleges have people from all over the world, and you never know what new tick illness will pop up in places they don’t normally belong. Tick carried diseases can mimic all sorts of other illnesses.

    Sending big virtual hugs to you all!

  43. There is nothing harder than your kiddo being sick and in pain. I hope you get answers soon and Hailey is back up and doing Hailey things quickly. All my love to you all!!! Hang in there, mom, you are doing great. ❤️❤️❤️

  44. You’re living every parents nightmare where you feel hopeless but I believe it will get better in the end. You just have to hang in for the journey. Sending healing thoughts to everyone.

  45. I’m sure they have checked BUT have them check for Ehrlichiosis. My niece recently had this which resulted in an atypical meningitis from a lone star tick. They switched her antibiotics and she is doing better. We live on the east coast so this was out there!! I hope they feel better soon!

  46. Oh, honey, know that you are thought of by thousands of people whom you have entertained and who wish things were better for you. I spent the last 15 years of my husband’s life living with my husband under the shadow of stage 4 bladder cancer. Honest stage 4. But the docs at Johns Hopkins and later NIH kept him alive and having fun. The roller coaster is the best analogy. Not sure I would trade those years since the love and closeness we developed during that time was unmatchable. Be a vigilant watchdog for your daughter. It works.sending hugs.

  47. I hope the docs figure it out soon and they will be on the road to recovery. Love to you all! ❤️
    Dina

  48. I will pray for all of you. I am sorry this is happening. The rose says it all.

  49. I’m so sorry you’re dealing with this. I can’t imagine how scary and difficult it is for Hailey and for you and Victor. Sending love and prayers to you all.

  50. Sending you all much love, many hugs and positive thoughts.

  51. If they haven’t already, ask them to TEST FOR LYME DISEASE! (sorry for yelling, just wanted to get your attention). I’ve discovered that the symptoms of Lyme disease can look very similar to the symptoms of menengitis and without a known or visible tick bite, it’s not something they routinely test for. Also, I highly recommend a Ren, and independent musician on YouTube who makes open, honest, music about his struggles with health and mental health, and frustration over trying to find the right disgnosis. He’s compassionate and empathetic and many find his music very comforting. Gentle hugs to Hailey, and you, and to everyone else who loves and cares about them. I hope you get answers soon.

  53. So many good vibes and prayers and well wishes are being sent your way. Expect them any second now.

  54. I’m praying you and Hailey. Being in the hospital is miserable. Especially when you’re in pain. Rose are such lovely, hardy plants. You prune them and they come back fuller and more lovely.

    Much love and support to you.

  55. Give yourself a hug! Having a sick child is worse than being sick yourself. Ugh! Here’s hoping they figure it out soon & have the right meds to make Hailey well. BTW: love that little drawing, & the rose is cool, as well! 😎 So glad Mama Nature keeps making beauty for us.

  59. Bless you all in this stressful time; hopefully they get Hailey feeling better soon!

  60. Watching your child struggle or suffer is the most terrible pain a parent endures. I’m sorry your heart is heavy. I hope you get direction and Hailey gets on a clear path to recovery soon.

  62. So sorry you and Hailey have to go through this. So hope the medical people figure out what is going on with them. Sending prayers, good juju and 💕

  64. Sending healing and hugs to you and hopes that Hailey will recover quickly.

  65. Sending all the good vibes to you and your family. Intentions for Hailey’s quick and complete recovery, and for no more sick-capades in your family’s future. ❤️

  66. So sorry your family is going through this difficult time. Thinking of you and sending up prayers and love. Take care xo

  67. Give yourself a hug! Having a sick child is worse than being sick yourself. Ugh! Here’s hoping they figure it out soon & have the right meds to make Hailey well. BTW: love that little drawing, & the rose is cool, as well! 😎 So glad Mama Nature keeps making beauty for us.

  68. Of course we are all sending positive healing vibes your way. Worrying will just wear you out. Much love! I haven’t been following you for very long but it seems like you have had more than your fair share of $@(T

    From Aging Awkwardly in Portland Oregon

  69. So sorry you are going through this! Sending lots of healing vibes and virtual hugs. xo

  70. I’m so sorry, Jenny! How stressful for all of you! Bring Hailey some of your roses! It looks like Desdemona, lovely and delicate with a fruity fragrance! Sending healing thought and prayers for you all! 🩷

  72. I am sending good thoughts your way! Hopefully knowing that your community is behind you gives you a bit of solace during this difficult time. Keep finding beauty wherever you can.

  74. Sending you love and hope and beauty, anything to help you through this.

  75. Sending you a couple of jokes for levity:
    —-
    What’s brown and sticky? A stick.
    —-
    Person A: knock knock.
    Person B: Who’s there?
    Person A: Control Freak – now YOU say “Control Freak who?”

  76. So sorry to hear about Hailey. Wishing you both comfort, rest, and healing. May you have all that you, Hailey, and your family needs to come thru this healthy and whole.
    Thank you for all your books and blog. They have helped me through some very dark times and brought me much laughter and healing.
    Lots of love.

  77. Hospital chairs and recliners are horrible. It very difficult to get comfortable, and they’re really bad for sleeping too. I’m so glad Hailey’s improving a little bit. Here are a few things I learned when my mom several times when she had cancer: try to tag team with Victor or other family members/friends so you can each get a little break, even if it’s to go to the cafeteria/food court to eat. Sit down at a table to eat, and if you can’t eat an entire meal, eat snacks more frequently to keep your energy up. Bring what you like from home so you know you’ll have something you like. Get up and try to walk around every hour or so, or at least stretch. If you and Victor can, take turns going home at night to sleep because you both need rest. Bring something to read or a puzzle book or something to pass the time. Make sure you drink plenty of water. I know you have chronic illnesses, so make sure you have your meds with you.

    I’m sending healing energy to Hailey and strength to you and Victor. I hope the doctors figure out what’s wrong with Hailey soon so they can get well and go home with you!

  79. Holding Hailey and the whole family in The Light.

  81. One of those $30 Ish mattress toppers, that look a little like an egg carton, might really help with your comfort. (i’m presuming they’ve at least given you one of those recliner type things.)

  84. Sending love and prayers to the universe that Hailey recovers fully and soon.

  85. Sending you love, prayers, and cat hugs. You, Haley, and Victor are in our thoughts.

  86. Sending love back to you and Hailey and your hubby <3 I hope they heal and recover quickly. I hope you all do <3

  88. I wish you well. You are so courageous and an inspiration to us all. I can’t even begin to imagine how difficult your life is, but you are hands down the funniest writer of all time. Sending love and good vibes.

  91. I’m so sorry to hear this. Praying for you and Hailey and your husband and the doctors to figure it out. Speedy recovery.

  92. you and my family will be in my nightly prayers. God is with you, even if you may not feel it sometimes.

  94. Aw, I’m sorry Hailey’s not doing well. I’m sending them (and you) all the love and positive vibes. Keep us posted if you can. Hugs if you want them!

  95. Wishing all of you massive strength and love to carry your extended family through this ordeal. To quote an old sage, “Rest in natural great peace, oh this exhausted mind…”

  97. I’m so sorry that your family is going through this. Many years ago, only a little older than Hailey, I had meningitis. It took so very long for the doctors to finally figure out what was going wrong with me (almost a month) that by the time the right course of treatment was decided, I was already beginning to feel a little better. It was a hellish time, but what always made me feel better was knowing that I had my friends and family who loved me. You are already doing all you can do to help Hailey. I know that to tell you to take care of yourself (and for Victor and Hailey’s friends to do the same) sounds foolish, but look at it this way– you owe your body to be as strong and healthy as it can be for Hailey. I wish for all the strength you need to be yours.

  99. Many wishes that Hailey feels better soon and can get out of the hospital. I also wish for energy for you and mom strength to battle life. Whenever I’m in the ER and suffering my husband reads my favorite book, Let’s Pretend This Never Happened. I have heard these stories ao many times and the soothing voice of my hubby and the comfort of your book does wonders. My son is going to school in Austin, TX and I’d love to visit your store one day.
    God bless your family and I hope it all works itself out.
    P.S. I loved what you said about the rose. I needed to hear that.
    Love & Hugs, A huge fan from CT.

  100. Sending positive health wishes to Hailey (and your whole family while I am at it.)

  103. Sending good vibes, good health and less pain and confusion- it’s always frustrating when the doctors seem clueless.. I got 10 different diagnoses from twice as many doctors and feel your and Hailey’s pain.
    If it’s too personal I understand but if you could share symptoms it’s possible one of your many supporters has experienced the same thing and could offer insight 🤷‍♀️

  104. Glad to hear Hailey is doing better. It’s a frightening thing, for sure.

    Many years ago my little sister went to Strasbourg to study French and German for her classical singing and, stuck in the middle of a crowd of international students, came down with meningitis, bad enough that my parents flew over with plenty of worries, but she got better.

    As she was in her hospital bed, though, her brain was so fried by the illness that she regularly hallucinated. The wildest was one night when the patterns on the ceiling turned into thousands and thousands of spiders, which all rushed to the walls, down to the floor, and then flooded out through the crack at the bottom of the door. It was as vivid as could be.

  106. Thoughts and prayers for sure…

    … and definitely have the docs check for all the tick-borne diseases.

  107. Please update us when you have the band width. Worried about you and yours.

  109. Waited until better news to comment. Could you post the last few instagrams within a post so we can read it?

  110. May Kwan Yin, the Blessed Lady of Mercy, keep you and yours strong and well, darling weirdo.

    One of the biggest reasons that I’m childless by choice is that I once read Stephen King say that his greatest fear isn’t one of the ghastly subjects from his stories, but the terror of something awful happening to one of his kids. I know myself well enough to know that I could never handle it either, and this solidified my decision. I have nothing but the utmost respect and admiration for those of you who are strong enough in mind and soul to be a parent; may the spirits shine upon you all.

    Your Pal,

    Storm the Klingon

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