Parenting with Chronic Illness: How I Manage Tough Days

[@tommycarlier9617]

I grew up with a mother who had week-long migranes almost every month, and i certainly never felt like i was missing out. That's just mom as i know and love her. Don't let anyone make you feel guilty for what's out of your control

[@jennifers5560]

100% agree with you!

[@pegs8743]

That’s super reassuring to hear, Tommy, as I also have a week-long migraine monthly, and have four boys. I often wish I could be more active with them, but it’s good to know this was a normal part of your mom in your life. Thank you! 💚

[@yelitzamaria]

Thank you for saying this, it was really important to hear!

[@DieAlteistwiederda]

I never felt anything in particular about my moms migraines either and her hearing loss also didn't have much of a negative impact on me. Only thing that annoyed me as a child was her not hearing the door bell so if I didn't have a key I was shit out of luck. Otherwise other peoples reactions to her disability had much more of an impact on me.

[@judebrown4103]

Ah Jess, been struggling to get back up after a bit of an ME/CFS hiccup so I know a little of the struggle. I totally agree with you that life didn't change much during lockdown! I did eventually have to acquire an e-bike so I could get out of the house... my exercise was choral singing which stopped for longer than any rest breaks I'd had to take and I realised something was going to snap. Think I saw you testing some electric trikes around that time too, my ebike has been a revelation, I can go sooo much farther than I thought possible just using the weight of my legs to rotate the peddles with no effort whatsoever! Brilliant machines. Do hope you begin to feel a bit better soon, bless your heart. 🤗🏳️‍🌈👍

[@freyainnit3193]

For as long as I can remember, my mum would lock herself in a dark room whenever she had a migraine. It just felt normal, just was told my mum was “ill” and to be quiet around her. I never felt like I was missing out, I just wanted her to feel better. It never effected our relationship negatively. So, mothers out there with migraines please don’t worry!

[@KindCountsDeb3773]

children can be a lot more grown up than we give them credit for .

[@nanamiharuka3269]

Ngl i was very curious about Claudia's profession as time went on, I thought does she have THAT much maternity leave?? Because it was never brought up, so wow! Its nice to hear she'll be working for/with you and amazing to think KZbin could support your family! Its wonderful, so happy for you all!

[@sersastark]

She's a dentist for the NHS while also working with Jessica for her channel!

[@krystlepoulin6382]

@@sersastark In the video Jessica specifically stated Claudia will not be a dentist anymore.

[@Femme99]

I was curious so I looked up if the UK is as bad as the US in therms of maternity leave. But I was pleasantly surprised to find that they have 52 weeks so she’d still have 2 more months left if the plan would have been to go back

[@sersastark]

@@Femme99 this!

[@sersastark]

@@krystlepoulin6382 I know! I was just answering about her profession! 🤘🏾

[@KathleenStidham]

Parenting with chronic illness, teaching with chronic illness, working with chronic illness... LIVING with chronic illness. I love that you don't only show the good days and the perfect clips. You show what it's like AND that we find creative ways *usually* to still do what we want and need to be do, including sometimes just putting things off or asking for help. It's okay to be real. I tell my students when I have a migraine or when I feel one starting, they see me struggle over the playing field in my manual wheelchair, and they see me do my best "in the moment" even as I acknowledge it's not my personal best or what I had hoped for. Thank you for all your representation, advice, and just plain letting us know we are not alone.

[@craftasaurouswrecks9277]

Duuuuuuude.... "Do I feel left out?" yes! IBS of all things kept me in the house close to my toilet for eight days and my family tried to help by going to the library for me to get some fun reading. There was an interactive Beekeeping exhibit happening at the library that day, and it was also the same weekend as the arts festival, which they had to navigate through to get to the books. it sounded like so much fun and I was just ...at home... on the loo. Hugs.

[@stellamax1734]

Your profile name is awesome :-)

[@craftasaurouswrecks9277]

@@stellamax1734 many thanks! My son chose it. He'll be five in May :)

[@dees3179]

Congratulations to you son, he should name all the things. I hope they bought you some fun toilet paper at least.

[@DieAlteistwiederda]

That's how I feel everytime my friends talk to me about all of the adventures they had because they are young and healthy and have all the energy and I just can't do this without planning and hoping I will have a good day.

[@ljcl1859]

Out of all my illness, chronic pain, etc. IBS is the worst of the lot. It is the most impactful of them all on my ability to live life.

[@RebeccaEWebber]

Watching a "Jessica in Bed" episode while having a "Rebecca in Bed" week makes me feel so seen.

[@porcelainmannequinn549]

The mental image of Jessica lying on the floor while Rupert plays around her just warms my heart ❤ Sounds like a really cute and chill family time

[@PtitBebelapinoublanc]

I clicked this so fast as I'm a fellow mama with chronic illness that deals with migraines often. It's such a difficult balance that I've had to process a lot emotionally re my 2 year old little man. Hard to not feel guilt some days but having such a supportive partner with good communication has been integral. We had similar conversations too💗 Looking forward to this video and I send so much understanding and support your way.

[@queenofdramatech]

I smiled so big when you said your thoughts were in a blender. Having chronic conditions I know exactly what you mean as I am going through that mind blender thing right now too.

[@jessicaoutofthecloset]

It always helps to know you are not alone ❤️

[@queenofdramatech]

@@jessicaoutofthecloset Thank You and feel better!

[@westzed23]

Great explanation of describing your muddled brain.

[@cinnarapmon]

are there any fellow migraine sufferers who feel judged because you’re still capable of doing many things even during a migraine episode because you’re more tolerant to the pain than an average person? i sometimes just call my migraines “bad headaches” around other people simply because i’m capable of moving and doing some activities even though i feel like i have a screwdriver in my eye

[@twilightfalcon]

Ditto to this. I've dealt with migraines since grade school and over the decades learned to just...well...carry on through all but the very worst migraines. It's definitely a balancing act, especially when discussing it with other people, especially those who can't "work" when in the midst of a migraine episode.

[@PenTangleify]

The amount of things i can do whilst pretty much unable to see due to my scintillating Scotoma, including finishing University essays , is impressive. But still I'd rather not 🤣

[@ImBadWithWords]

Yes absolutely. I'll often avoid telling people I have a migraine when it's presenting as primarily pain and I can push through it so that they don't question why I can't do the same when a migraine is presenting as primarily confusion, nausea, dizziness etc. As frustrating as it is, when you get frequent migraines sometimes the consequences that come from resting are worse than just ignoring the pain.

[@dees3179]

My migraines last several weeks, the pain isn’t excruciating (fortunately) but then people fail to have any sympathy. Because if you are not lying on the floor or have your head down the loo apparently it doesn’t count. Hurts enough I can’t sleep. Makes me afraid/unable to drive. Can’t think. Can’t be interested in anything. Can’t be bothered to care about anything. I may pull out of a rehearsal with a migraine, but then the following week and the week after I still have the same migraine and people stop believing it. I sort of think that a three day dreadful pain session might be nice for a change because at least then people would believe me. Only sort of though.

[@charliebrown1184]

My ability to work through migraines was developed through 20 years of experience and learning coping strategies. When you're a single parent there really isn't any other option! But there are levels of migraine that I can work through and others I can't. If it's just aura, pain, nausea, and a total lack of spatial awareness, I can just bear it an carry on with most things. If I'm super photosensitive with it I'll wear very dark polarising wraparound sunglasses to dull the pain down to a more manageable level and I can even work through the flashing lights. If my job was more computer-based things would be very different as looking at screens for longer than a minute is very difficult and if I get fractured vision then I'm just done, it's impossible to see or work through and I need to lie in the dark until the worst of it is over. Luckily those ones seem to be more short-lived and less often than my usual migraines, which can last anything from days to weeks or even months at a time.

[@connie6545]

Why do we, as disabled people feel like we have something to prove?? I felt like I just had something to PROVE--to show that I was USEFUL and vital to myself and to those I loved. So . . . instead of taking GOOD care of myself, I would push myself to the point of almost dropping to the floor. I would bake numerous loaves of bread, can fruit into the night and couldn't figure our WHY my head hurt SO bad and I couldn't move for days!! It has taken years to learn how to pace myself, recognize my short-comings and take better care of ME! Yes, I still get my "killer migraines" and THINGS still get done. But, in the meantime I rest through them. Yes, I can understand a 12 DAY migraine, and I can only say that I can relate!! Take care, Jessica; take good care. 👍💖😎

[@teeandessing12]

Productivity culture (especially in the US) is so toxic. We're made to feel in competition with each other instead of simply being empathetic. Adding on to that is the complexity of "invisible" disabilities such as migraines compounds that. ie "Your arm's in a cast, let me carry your groceries." v. "Oh I'm sorry you have a headache, I hate when that happens. Here's a daunting task I need you to carry out."

[@rai1879]

I had a 8 day migraine during uni midterms week. I was really thinking about chopping my head off by the end. 😭 I had to commute for 3hrs (6total a day) with extra car sickness on top. Worst week ever, truly.

[@sarahrosen4985]

OMG!!!! That is Purple Heart battle field survival medal worthy. Fellow migraine sufferer and I couldn't do that. And Relert + some Sinufed take care of most of my migraines within a few hours.

[@KindCountsDeb3773]

@@sarahrosen4985 Does the medicine you take give any clues as to the origin of your migraines??

[@sarahrosen4985]

@@KindCountsDeb3773 Relert is a brand name for Eletriptan. First and foremost, the neurologist who first prescribed it for me in NO WAY did any kind of in depth testing. He asked me a question or 2 (run in the family? and where does it hurt?) and threw eletriptan at me and hoped I would go away forever. I got lucky and it works for me about 99% of the time. My migraines have always been hormonal migraines. "Oh, here's the migraine. Period is just around the corner! Yeah!" As a child, I had aura, nausea and could not tolerate light or sound. As an adult, they are only on 1 side of my head and have the ice pick + vice grip feel. I didn't realize they were migraines until I started working in a start-up that created a device that used ultrasound to temporarily shunt blood flow in small parts of the body. Migraines and open heart surgery were their 2 use cases. They had a poster on the wall of migraine symptoms, including the 'one side of your head' type. Before that, my GP kept sending me for sinus X rays, thinking I had bad infections. Why do hormones cause blood vessel issues which lead to migraines? Don't know. Why did I start getting varicose veins in my legs when I started puberty and migraines? Why did birth control stop my migraines? Why did my mother and aunt stop having migraines when they entered menopause? Why did I have a couple really bad years with varicose veins that ached so much it hurt to exist at the same time I had an increase in severity of migraines and a uterine cyst? Why did they all get better with progesterone? More importantly, why isn't there a proper women's health doctor I can see who sees the whole picture of how these things interact in a female body???? Why are women just a bunch of completely unconnected parts to be divvied up between doctors?

[@rai1879]

@@sarahrosen4985 wonder if they work with stress related migraines... And if they're sold in my country cuz it might be worth it to buy some 😂 _finals are coming_

[@katemeeks8625]

Great video. I’m a long migraine too. In fact, just taken a trip tan as getting twinges. Between all phases of migraine they last anywhere from a week to a month. I’m currently using Botox too. It has helped somewhat. As I’m blind, and highly photophobia, light is one of my biggest triggers, along with stress, eye strain and my periods. Couldn’t have just had a normal trigger like cheese. Had to be things I have no control over. My husband and I tried for many years to become parents, 18 in total. After an IVF cycle where zero of my 10 eggs fertilised, we just couldn’t handle the stress any more. Giving myself that permission to grieve what we couldn’t have certainly helped for a while with migraine as a major cause of stress was the baby making. I’m now content watching a few channels in here through their parenting journey. I shall content myself to be a parent to our two lovely guide dogs in the house. This is a very long way of saying that your video resonated even though I don’t have children. If none if this makes sense, blame the painkillers!

[@KindCountsDeb3773]

I'm sorry you had a tough time trying to get pregnant. I'm older and have no children. I so enjoy my nieces and my great niece/nephew. I'm not sure I could handle a migraine situation like yours or Jessicas. But I might have surprised myself and coped well. It is a struggle and I wish you well.

[@gigidodson]

Migraines are an EVIL thing. My daughter has a migraine disorder plus epilepsy. She truely suffers so badly. I dont wish it on the worst person. You have my sympathy.

[@likethecityaustralia]

This was a great video, Jessica. And such great news we will get more Claudia content. Do you think she’d be interested in talking about the decision to cease working in favor of caring for your family in a video?

[@tompw3141]

One plus point about being a dentist if that if you decide to go back to work, people's teeth still work the same as they did ten years ago :-)

[@KindCountsDeb3773]

@@tompw3141 hahhaha right !

[@birgitteandersen5886]

Honestly, my mother having a chronic illness helped me to better understand others who have a chronic illness. She finds her illness to be very embarrassing in public, but I don't find it that way at all. I understand that she isn't able to do things, and I still love her.

[@AngiDas]

I have dealt with depression and axiety much of my motherhood. It has been hard but like you said there are some bits that are hard but they pass. My son is now 20 and thriving and my daughter is 14 and they are good people who love their mum even when I am having hard days.

[@MJ-pm8pb]

This is lovely x

[@KindCountsDeb3773]

You raised them well, they have empathy - and love their Mum.

[@Peg06]

Rupert is an incredibly lucky child. And now he's going to have two parents at home all of the time!!! That's so great for all of you. Excited to see more of Claud and of the back of Rupert's head! I love it when you read to him. I don't understand a word, but it's beautiful.

[@ashassassin]

I couldn't imagine having 12 day migraines. I get them but the longest I've had was three days. Oh Jessica I hope the migraine goes away soon. And that your jaw does eventually get stronger. Best of wishes to you and your family.

[@lindseys8568]

Watching this months later, but so relieved you didn’t have cauda equina, Jessica!! I had it in 2017 and thankfully had surgery within about 18 hours so I’ve recovered quite well (I’ve got some lingering issues with my “fun” nerves that are a bit too talkative and some muscle pain, but all the scary stuff resolved!) Sorry for the life story, it’s just that whenever I hear cauda equina syndrome somewhere, I try to leave a comment . Because it’s so rare, people can feel very alone, and I hope that by commenting I can maybe help someone reading. Thanks for all the lovely videos! This one has been particularly helpful as I’m navigating some of the same concerns. ❤

[@Sarahz1815Rokicki]

I wondered if Claudia was going back to dentistry or not, I'm glad to know now :) I love that she can work for you and you all get that much more time as a family! I'm curious, if she's getting a paycheck herself or if all the funds from (the job? work? KF company?) just go into the household (only if you want to share). I had shared finances with my first husband and very separate finances with my second, and am always interested in how things work out especially when it's not two people getting totally separate paychecks from different companies/sources.

[@Serena-or7sl]

the easiest way to have a company is to pay everybody a salary (even the founder). If they have a company as opposed to Jessica being an independent "contractor" then it's going to be the first way. I'm not sure if she can even create a payslip as an independent contractor.

[@michelletackett9489]

I feel for you. My brother has migraines and they aren't fun. Gentle hugs. I hope you get better Jessica.

[@JayR-wg9jq]

i also grew up with a mother that had frequent migraines - and i can assure you that it wasn't something that traumatized us. sometimes mom just has a migraine and needs to lay down quietly for a bit and dad has to take over

[@hannahland7863]

I'm not a parent but I also have EDS and have just started employing a part time assistant/carer, which I am still dealing with some guilt about. But hearing you talk about Page is really helpful! I'm glad you have her. I love hearing you talk about disabled parenting.

[@KindCountsDeb3773]

You and no one else should feel guilty about getting ASSISTANCE. You need it, you get it. You have a valid reason and if it helps, that is relief YOU deserve. Just get a nice carer!!

[@hannahland7863]

@@KindCountsDeb3773 this is actually so helpful to hear. thank you!

[@hamsterpouches]

Can I ask, how do you pay for an assistant/carer? Do you get support from your council or anything or is it down to you to have enough spare cash?

[@bleuumscarlett7977]

My mom has had migraines until her menopause. Growing up, that meant sometimes, friends couldn't come over and we had to take care of our meals/stuff ourselves and be generally quiet. Sometimes it would suck, but you know, you see your mom being in pain and you don't take it against her 🙈. I don't know for my siblings, but i never felt like something was missing or that it was a problem, it was just this thing where sometimes mom can't help us out or tolerate noise and that's it. If we wanted to see our friends, we didn't HAVE to see them only at our house, we could go to their place or to the park, and we didn't HAVE to blast our music or the tv either, we could put on our headphones 😂. And now I have migraines too and I get it.

[@EOwens-uq4zd]

My mother also had frequent, lengthy migraines. She was still a good mother and took good care of me. Dad was never resentful about it, and neither were any of us kids. It was just part of life with my mom. 💜 You're doing great.

[@cutepotato6476]

I'm so so glad for this channel, Jessica. I've followed you for a long time but it was some months ago that I got diagnosed with Fibromyalgia and CFS. It's been, brutal. I work in the development sector, in a very demanding job and I'm going to grad school in a month for again, a rigourous programme and I'm scared stiff about how to do it all, especially when my body feels on fire most times. I'm also a teacher, and teaching a class of rowdy adolescents with severe brain fog is Not Fun TM. I struggled a lot mentally for months after I got diagnosed and I still do sometimes, mostly with the grief for a life that I had earlier and this channel has helped me so much to just accept and live myself. To see you this happy, sorted, living your best and also managing your health gives me so much hope for myself, in a society that just repeatedly tells me that we don't get happy endings. I think I took notes during your pacing video because it gave me a lot of first hand knowledge that I wasn't getting from anywhere else and also made me feel that it's okay to ask for help. So thank you, Jessica, truly, for just being you.

[@KindCountsDeb3773]

Well said CP. Don't be afraid to get help or adjustments to your work/schedule, if it helps. Maybe your work won't accommodate, but maybe it will. I hope you can find a "work around" that gives you relief.

[@ivyblack2209]

For someone not feeling their best & brightest, you are fabulous ❤

[@KindCountsDeb3773]

Honestly, I don't know how Jessica does it. I'm not sure I could ever work thru that kind of pain. And have positivity and smile like Jessica does. I have some medical issues that I could do better controlling, but my depression/anxiety make it hard to take care of what I need to do. Coming here does give me hope and realization that I can do better.

[@erjinson]

year 12 student here^ whilst i don’t have any chronic illnesses i’ve been really struggling with several chronic conditions that worsened over my senior years and they’ve had such a negative impact on my mental health and self worth especially with my grades drastically falling and quite frequently not being able to do anything but lie there. not oNly does watching your videos bring me a sense of comfort in telling me that i’m not alone and not worthless, but i aLso feel so incredibly amazing to have “my lesbian mums” and a beautiful representation of lgbtq+ love and parenting with disabilities as someone who very well may end up in a similar situation down the road. thank you for everything, jessie and claud (and rupert, tilly and walter) for filling the previously gaping hole in me and being the most amazing role models, i love you all ♡

[@TheLeopardBrightsky]

I think it's amazing that there's a way for disabled people to be the main earner in a family now. I wish you both the best ❤️

[@ItsBecauseImBored]

I'm sure it has happened before, too. For example Frida Kahlo could definitely be considered disabled and was very successful. But yeah it is great that the internet provides so much more possibilities!

[@rebeccacuthbertson1271]

Thank you Jessica for all this parenting content. Honestly it feels like a breath of fresh air with all the parenting noise on the internet. We're on our TTC journey and having your videos to fall back on or come back to for advice and positive parenting mental health is incredible (as in reminders to take care of yourself and such) and not in a toxic positivity way. All your advice and wisdom is based in practicality and reality and it's so great, so thank you. Feel better and thank you again 💖

[@katie-vq4op]

Love your honesty and perspective on these incredibly important issues and how graceful and vulnerable you are when talking about yourself and your life! I think you are such a wonderful person and I hope you get some relief and rest soon and quality family time

[@ScattercatJackrabbit]

Thankyou so much for this. My partner and I are both disabled in different ways and we are trying for our first, and the thought of how to manage bad days has been haunting me. I am so grateful for what you put out into the world. There's little enough representation of disabled parents as it is, and your work is wonderful.

[@cassandracattell677]

I am on the verge of tears -- thank you for this video. I also have EDS and it causes me no end of pain and exhaustion, and I'm in a bad stretch right now. I feel rotten, my head is pounding, everything hurts and most major joints want to dislocate, and I'm bringing home my service dog puppy in a few weeks, which I have to drive five hours myself to fetch, and I've been so ill that I have been horribly anxious about whether I really should do this because I have to train him myself (I can't afford a program-trained one). The first few months are remarkably like the first few months with a baby, and I've already had to go through the agony of deciding not to have my own children because of the location of some ligament damage in my lumbar spine and a horrible allergy to progesterone that make the endeavor unadvisable; in that I know what the overlap with a new puppy is, I have been feeling so inadequate and broken. Forgive my rambling, but this hit home today, and I needed to hear it.

[@donnaezrol4777]

Jessica, I cannot thank you enough for your channel. It helps me so, so much. Tips on energy conservation, and your explanations of your symptoms are very comforting. Your video about "you are not useless" is my go to video when I get very depressed about my limitations. Queer History 101 is my favorite. As an older lesbian, I am often worried about our LGBTQ youth. They are living in a world I could not have imagined as a youngster. But, they need to know what it took to get here. They do not usually know about Dr. Hirshfeld and the institute of the library he had collected from the scraps of our early history. There was a vibrant community of queer and gender non conforming people who were living openly in Berlin. And, how many of the community were murdered and experimented on. Or how they were tortured before they died. Please feel better. You are a superstar ✨️ for me.

[@imperialphoenix]

What an cute story about Rupert going for rides with you on your electric wheel chair. I love hearing how you sign to him when you read, and he signs back. What a beautiful family you all (Including Tilly and Walter) all have!

[@SimplyHolisticASMR]

i dont have a child but caring for myself feels like being a parent a bit too often. Your videos are amazing

[@thekatzcorner]

as someone who is disabled, these videos always bring me so much comfort. I don't always have the most understanding people in my life, and can often be made to feel like I'm not doing enough when I'm trying my best. thank you so much for your videos. just by living your life, you prove that you can make accommodations for most things. I don't mean this in an inspo porn kind of way, just that it means so much to see someone being frank and honest about their capabilities and disabilities and still able to have a full, wonderful life.

[@noodlelovr]

My partner has a chronic illness (Rheumatoid arthritis) she was diagnosed with at 4, and suspected neurodivergence. I myself have chronic mental illness which I've been learning to manage for over 10 years now. Similarly to Claudia, when we got more serious I had a bit of a crisis like, "omg will we be able to give our future children the childhood they deserve?!" Seeing you two overcome obstacles together is really reassuring that we can do this. You two are fantastic mums and Rupert is so lucky to be in such a loving and nurturing home!

[@soniaolson8862]

I'm in bed with a migraine right now, I am/was scared to have kids but man your video made me feel seen and that maybe it can be done. You make me feel less alone and empowered even when my mind betrays me.

[@divaunt]

Thanks for this. Today was a bad pain day with my chronic illness and just lifting my 18 month old left me nauseated with pain. Watching this video made me feel less alone. Reading the comments from children of parents with chronic illnesses helped me to enforce the idea in my own head that I'll be more to her than someone who has to rest a lot. I appreciate all of you.

[@xxxGiuliaxx]

I remember when you were devasted because your laptop broke and you didn't know how to afford to replace it. It is so nice to see you being able to support yourself and your family from this job now :)

[@throughthedin]

Thank you for the reminder: don't be scared! Sometimes I psych myself out and worry that I won't be able to cut it as a mother with all my disabilities and health issues, my wife does as well.

[@austinkacura2618]

Gentle reminder, we love you & your beautiful family! Thank you for being such a light to all of us. I hope your migraine calms down, I have hEDS and tend to get them often too, they are lovely.

[@forgetful_hq]

my favourite part of the video is definitely at 3:10 when jessica waving her arms around and then goes ‘oh no shouldn’t do that’ lol, like it’s so relatable!! i do things like that really often, i just make a simple movement and go oops shouldn’t do that. it’s such a small thing but i’m glad it was left in :]

[@lovelearnersofaredhead892]

Thank you Jessica for sharing so much! As a chronically up and down ill person myself it is soooo validating to see and hear someone else going through this and how to deal. I appreciate you and Claudia sooo much. I just thanked my husband for being as awesome as Claudia is, and for all his help and understanding. Also i think Rupert has amazing moms and is adorable!

[@Lizzy43645]

Omg I’m so excited for Claudia!!! Could you do a video about how you came to that decision and how her family reacted to it? I’m so excited for you two and Rupert!!!!

[@caoimhenimhuireadhaigh1303]

As a fellow migrainer, I highly recommend getting custom earplugs! My quality of life has immensely improved since I got mine

[@rheagalarneau1366]

She’s deaf.

[@caoimhenimhuireadhaigh1303]

I'm aware. She said it in the video. She also said that she can still hear, just not distinct words. Thus, earplugs may be of use to her when she's within a migraine

[@katwitanruna]

As a fellow chronic mom, you’re doing a great job! Every parent is different.

[@jennifers5560]

Congratulations on Claudia working for you! You make a great team.

[@hannahbee264]

Jessica, could you do a video on fomo and disabilities? I am really curious to your perspective

[@faerae7530]

I second this. I am full of the fomo but have to cancel so many plans

[@doubtful_seer]

I’d be interested in that. I haven’t left my home for a few years (other than a few doctor appointments that couldn’t be done remotely) and "lost" the overwhelming majority of my 20’s. I don’t even have friends or family left except for my mom that I live with.

[@jennifers5560]

@@doubtful_seer ❤️

[@katefriend4085]

These videos remind me of when my boys were little... I'm so glad to see/hear that neither of you had ppd... I did, and I have a lot of regrets from things I missed out on because I was nursing and couldn't take medication but felt numb a lot of the time. Even with the numbness and sadness, it was still a magical time, babies teach us so much about ourselves, and it doesn't seem to cost them anything to do it.

[@jennifers5560]

❤️

[@tortoiseshell.cats.and.dragons]

Thank you for making these videos where you have to stay in bed because you aren't feeling well. They make me feel better about the days when I have to stay in bed because of my disabilities, and that means a lot to me.

[@PhoebeFayRuthLouise]

That’s great news that Claudia will be able to stay home and work with Jessica! Rupert is a lucky kid!

[@graywithana127]

Hi Jessica! I just wanted to let you know that last week I was at the rheumatologist to check for psoriatic arthritis and ended up getting diagnosed with hEDS. My doctor was so surprised when I told her I had heard of it but its because I watch your videos! I first subscribed to you to learn more about being deaf because I had quite a few deaf members of a discord server I am the admin for. I've learned so much about myself and people with other disabilities from watching your videos. I just wanted to say thank you

[@justlola417]

That last part is very interesting, it really puts it in perspective to hear someone with a chronic condition talking about how comforting it is that the hardships of parenting are temporary, I never thought about it that way

[@KindCountsDeb3773]

Jessica, I really feel for you having pain as you do, especially the migraines. I am proud of you and Claudia (I'm OLD so I can be proud lol) for giving Rupert such tools and skills to be a more independent, capable child, and his ability to communicate his needs, wants etc.. I'm thinking that will help ya'll as parents as he grows, with less frustration from Rupert or extra work as parents. That is massive ! All because ya'll incorporated your skills and the proven Montessori methods. Changing routines, activities for him is being addressed well because you find "a work around" (your saying !) any conflicts. While you have your own unique issues, other parents with or without disabilities, will have to do some adjusting as well and the child is still being cared for very well. Rupert's got your back Jessica/Claude !! 👶🏻

[@sara.1492]

I like the thoughtfullness of your parenting!

[@rainyhammer9235]

I bow my head to you. You impress me a lot. I have migraines too sometimes. Those last three days though, pretty bang on the dot. I find the idea of 12 days a little bit scary. I don't really cope well when I get sick. I just sit in a dark room with the duvet on top of my head hissing at anybody who dare turn on the light. Not only am I impressed with how you cope with these migraines, but I am impressed with how well you are with Rupert. Everything about you just emanate love. And I find it so cute to see him sign. I am not a mother, or anyone experienced with a child, so this might not mean anything to you, but from my point of view you are a great mother, and Claudia is a great mother.

[@KindCountsDeb3773]

Very good feedback for Jessica, the fact she continues to help people by giving her story. Hope y you'll feel better soon.

[@micheledeetlefs6041]

I am so sorry that you were feeling ill. You uplifted me today so maybe I can return the favor. Without going into details, I had a couple of experiences at work today that made me feel like the 'poor useless little cripple girl". After hours of being grinding my teeth and hiding my tears, I disabled husband told me " give yourself a treat and go watch! Jessica." Listening to you didn't just help calm me down, but it made me feel a lot less alone. Knowing that you would do a video like this even though you don't feel well just for people like myself made me feel a little more loved and a lot more special than my job did today. I think that's your gift. There are times when your simplest gesture or gentlest voice makes us feel like we belong. Thank you for that. I know I really needed it, and I am sure other people do as well.

[@jennifers5560]

I love that your husband knew Jessica would make you feel better! ❤️

[@micheledeetlefs6041]

@@jennifers5560 After 18 years of marriage, he can practically identify me in a crowd by the sound of my breathing! That scene in the first season of Stranger Things where Joyce identifies Will by the sound of his breathing always cracks him up. He's my rock.

[@jennifers5560]

@@micheledeetlefs6041 that’s so sweet!

[@ladyflimflam]

I’ve dealt with chronic migraines to the extent that I didn’t even really notice the migraine until it was gone.

[@lexi-the-hildafolk6300]

My mother was disabled and so am I and I think we both did pretty great. Watching you really helps especially on a sick day for me. Stay lovely

[@sarajodinges771]

As someone who had "normal" migraines since my 6th birthday, which turned into "painless" migraines over the last couple years... It's still not better, even with "just" the neurological symptoms. I'm sorry darling 💜💜💜

[@laartje24]

Genuinely curious, how do painless migraines work? Never heard of those before. How are they different compared to normal migraines?

[@AuntyFay]

I’ve recently found you so I’m working through older videos as well as watching new ones. I needed this one today! Thank you I hope your migraines are more under control ❤

[@missy0witch]

This brings me a lot of comfort about my future, thank you! Hope your migraine goes away soon and sending supportive hugs and love to you all💜

[@dollhousemakr]

That comment about childcare is my life. Ever since my first kid was born, I've gotten comments about why we don't just put them in daycare and I get a job. Because in order for us to put them in daycare, everything I'd be making at said job would just be going to pay for that, so why am I working just to pay for someone else to raise my child?

[@alyssalindsey3847]

Thank you for this. As I’ve gotten older, I’m more and more terrified about what having children will look like. I feel like you do or did, that taking care of my body is like caring for another human (or at least 3/4s of one). It’s made me so scared that I just won’t be able to be the parent I want to be. It’s so encouraging and relieving to see that it can happen. And that it’s not just all struggle or forced pain. Wishing you a better day! Thanks for being a stage ahead and showing it to me. ❤️☺️

[@chronicallyella1191]

You help me immensely, when I find a wife in the future and we have kids, I will be a mum with EDS, a chronically ill parent, the non birthing mum, and it is very reassuring to see you and see how you are an amazing mum and just as valued as Claudia is to your son. Thank you!! Xx

[@crystilmurch5659]

Thank you for your videos. They never fail to touch my heart. It is thanks to you that I have been able to come to a point of relative peace with my body and my health issues for the first time in 25 years. I am so grateful for everything you share. It has changed my life and made me find patience with myself. Also, congrats to all of you on Claudia's new career path! It is so exciting that you will all be able to share a life working from home together. :)

[@jewelcurrie345]

I too am stuck in bed, and have been for a few days. I’m not physically disabled, but I caught some bug of some sort which is really taking the energy out of me. Watching this channel has really helped me feel good, learn some sign and things about babies, and I feel really seen in that I want to be able to do more than I’m currently capable of. I really love you guys, thank you for sharing this with the internet ❤️

[@itme999]

I don't have a chronic physical illness, but I have OCD and depression. I REALLY relate to what you said about how other people come to university to have fun, but you've come to university with this baby to take care of. That was me too. 💔

[@Peppermintytea]

Watched this as I'm recovering from a migraine...I also have scoliosis, TMJ, and migraines that can last for two weeks or more. One of the biggest things that's helped me during my struggle with chronic illness is a grateful, positive mindset. Sounds like b.s. until your body breaks down and you realize the one thing you have control over is your mindset! Sending love to Jessica and anyone else who's also having a rough day. 💜

[@hazelmoses1052]

My mum has chron's, she's had it for a long time, so I grew up with a chronically ill mum. I never felt like I missed out. Mum was sick, sometimes she couldn't do things that other mum's could. That was just my mum. She let me know that she loved me, and that is what I most strongly remember from my childhood. Yes I remember her going ino hospital, and passing out, and being ill, of course I do. But that was such a small part because, much like you, she did what she could around that to make sure that that wasn't all there was. I'm glad that your earlier fears turned out to be less of a thing. Hope that you are feeling less migrain-y.

[@Sk3tchen]

Same chronic illnesses and a disordered body 😂 love the migraine description, mine I described to a doctor "it feels like someone is squeezing my heart in a wise, cracking open my skull, while simultaneously it feels like hot acid is being dripped in my head and someone has a blowtorch to my face" esp TMJ induced migraines, sending hugs to anyone who has ever known this agony ❤

[@reybenesmisasi8017]

As someone who has had to go to the er/urgent care three times this year because my migraines simply Do Not Stop without medical intervention sometimes, I always feel a little less alone with mine whenever Jessica talks about hers. It’s always isolating to think about because I don’t know anyone else who deals with migraines as often as I do who ALSO has to deal with them just…. Not stopping after three days and the sheer and utter pain in the ass that can be.

[@LilDinoGuy]

You know, I’m pretty sickly and I fear not being able to manage parenting in the future. Though I also end up considering how my mom was also a sickly woman who spent a lot of time in bed. I remember I would get home from school and hop up in bed with her and we’d read together. In the evenings, I’d bring her Instant Breakfast along with her medicine and I looked forward to taking a sip of it before giving it to her. Kids do know how to meet disabled parents where they’re at because the parents are the ones who give kids their first idea of what “normal” is. I think that’s important to remember.

[@GenocidexDreams]

Whoa, congratulations Claudia! That’s so exciting! I’m so proud of you both for being able to make that choice! As a small business owner myself, it makes my heart sing when someone can let go of the other job and focus on their business.

[@millies2788]

I think it's really nice that you were able to be honest with yourself about a feeling of missing out. I'm trying to do that more myself.

[@airohtheenby]

My mom and I both suffer from chronic migraines. As a little kid mine weren’t as often but my memory of my moms migraines was that sometimes she would go ‘nap’ on migraine days, and she made me feel tough and cool for being able to swallow pain meds when I had one. When I was around 11, she was single parenting my older sister and I and still made it work. I have a very distinct memory of coming home from school to see “migraine upstairs” scrawled in wonky handwriting on a white board. It looked like something out of a horror movie lol. For the most part her migraines did not significantly impact her parenting, and we are weirdly closer because of it because she understands and knows what to do. However, my mom does push herself too hard to avoid worrying others about how bad it is by asking for them help. That day when I was 11 I remember feeling very worried because I knew that my mom drove herself home when she couldn’t even write straight. I was so scared she was going to get into an accident driving with a migraine. After I expressed this she reassured me that she understood and would ask for help next time. Being chronically ill with an unjust medical system helped give her a certain habit of problematic independence that she passed onto me. It’s something we are both individually working through after realizing how much of an issue it can be. This doesn’t seem to be much of an issue for Jessica which is fantastic, but I mention it for anyone in the comments who might relate, or need to hear to prevent passing on the same habit to their kids.

[@leslieyancey5084]

I just love your outlook on everything! With all your struggles, you manage to be both pragmatic and optimistic. You have such a lovely family! I hope you feel better soon!

[@abacaxipineapple9147]

Hope you feel better soon - you’re doing a great job!

[@maggielawton7435]

My grandma had chronic migraines throughout her life and was bed-ridden for days on end when my mom was growing up, and I guess I got her genes because I get them too! They suck SO much and the feeling of being left out and missing important things is the worst! I feel you and It’s so comforting to see a fellow lesbian with chronic migraines and other health issues. You have given me hope that I can start a little gay family and do what I love despite my health problems. Thank you Jessica!

[@bethany5665]

Just woke up from a migraine that started at 5 AM and caused me to throw up until 7:30 AM...Jessica, I literally feel your pain :,)

[@tammysantana7200]

I think it’s wonderful that Claudia is going to stay home. I’m so sorry about your headache I’m on day four and I’m miserable. You’re a fantastic Mom.

[@ixykix]

Absolutely perfect, I was nodding in agreement with everything you said on being a disabled parent, right down to assessing how you felt about what others thought or might have had to say about it! My LG is 7 now and like you I wouldn't change a thing. I always say that having a baby was a gigantic explosion in our lives, the most utterly terrifying, exhausting, beautiful, amazing, devastating, awe inspiring time, it still is really! I really do think that my disability prepared me (and my partner) really well in some ways for becoming parents. Thank you Jessica for sharing this, I think it's really important to talk about.

[@myNAMEisKIRSTY]

Thank you for being the role model we all need in the world!

[@kathleenbooth8426]

I really needed this video today. I have an energy limiting chronic illness (MECFS? Long Covid?), I'm 6 months pregnant with our 2nd child, and I'm now 1 week post covid and trying to pace and recover. I was already a bit worried about how I'd adapt and pace with a baby - and that was when I was at a mostly stable baseline. Now I'm back to days of mostly resting and I'm worried about whether my previous baseline is gone forever. Your video was a good reminder that with the right planning, tools, and help, we can find a way to do this in a sustainable and balanced way, no matter how I'm doing. Thank you 💜

[@boredgrass]

That video was a pleasure to watch! 10.06: You only sign with Rupert💡this signing seem to be a treasure trove of insights! Please continue with this subject! I have a feeling we can learn a lot from that! Claudia your videographer THAT explains a lot! The quality of the camera work had been very noticeable to say the least and notwithstanding that Claudia is a fully fledged presenter in front of the camera! Moreover in parts where she is "the subject" in her role as wife and mother, she has a natural presence that doesn't let show her awareness of the camera but is able to use it to her advantage! She is able to show her "best side" without acting. That is something even not every seasoned KZbinr is able to pull off! I hope you get better soon!

[@katherineadair1834]

The more I hear you talk about signing with your child, the more I think its such an excellent opportunity to communicate with them in a beautiful way. It's inspiring. Much love!

[@eliciacheney84]

As a mother who struggles with a semi-diagnosed chronic illness, I really appreciate your candidness and encouragement. I still feel guilty about not being fully abled because it's only surfaced in the last five years or so. Thank you for talking about this subject that can be so painful.

[@jeroenimus7528]

Had to watch this in two goes due to energy issues but good to see/hear from another disabled parent. Guess our respective issues do indeed matter (unfortunately I can’t much deal with Abigail when a I’ve got a migraine, although if need be I can “push through”) but I do recognise we’ll just find ways around it all to make things work. It is indeed more about “us” missing out on some things than the bairns missing out. She is having a blast in life and great to hear Rupert I’d too.

[@Sophie-pi4ov]

I am so impressed how you two do parenting. You do it in a way that is normal and good for you all. 😍

[@daydream1066]

I don't know how in the world you can talk with a migraine (not discrediting you just honestly amazed by your strength!). I get sinus migraines due to allergies/pressure change in the air. I describe them as someone squeezing my temples a hard as they can, hitting me on the back of the head with a baseball bat, and punching me in the face. All while feeling like I'm going to throw up any medications that may help me. I end up curled in a ball until the pain dies down enough to take medication... I'm just so impressed that you are able to make a video like this, it is really encouraging that I too can try and overcome my migraine as allergy season approaches.

[@Imberis]

One of my best friends growing up had a mom with Lupus. She was great! Even though sometimes she couldn't drive us places or make us food because she was feeling ill, it sort of taught us to do things on our own while still knowing if we messed something up really badly we still had a parent there for backup. My friend and I learned how to properly cook pasta together as two twelve year olds, lol. We went out and played in the yard or did quiet indoor activities while her mom was resting and it wasn't a big deal. And at least for me as just a friend and not someone who lived there full time, I can say I didn't resent her for being ill at all. She was a lovely, funny, playful woman. She passed away a few years ago and I think about her sometimes, always fondly.

[@vampgaia]

Thank you for sharing your story so openly. My sister is chronically ill. Children adjust and they know when they are loved.

[@alicecain4851]

Congratulations on the decision for Claudia to change careers! Jessica, you are an amazing person for such a number of reasons. Claudia, you are an amazing person for such a number of reasons. The most amazing thing is that you found each other! So many, many people don't have the patience with/for people with chronic illness. Also so MANY people don't find and take into their lives the Montessori aspects of raising a child from birth! Those toys and activities are wonderful with teaching so many skills as the child is "playing" - and they are! They are all designed for the growing development of the brain. Rupert is so much more involved with his surroundings and being taught about exploration. I'm so happy you'll both be at home to be with him and be able to provide his care. And yours Jessica. I'm so happy you have an assistant who can help you to be successful and doing what you love. It'll be wonderful seeing even more of Claudia too. Thank you for sharing this. I needed to see someone be successful and have a (several) chronic issue(s). I hope the migraine looses up its grip soon. You looked wonderful but it was obvious that you were suffering. Please - all of you - take care. Don't worry about what you might miss. Keep celebrating everything you're there for! Try not to let the idea of what you're "missing out on" grow or it will absolutely become overwhelming. Deal with "what is" not "what if." Yes. I do know. Take the best care.

[@nymeria941]

Thanks for making this video! I've been thinking a lot about this as I've been getting ready to have kids myself, and there's not a lot out there for disabled parents.

[@Nao_Craft]

Thank you for another fantastic video, Jessica. I’m not a parent, but I’m having a low spoons period at the moment and it’s seriously zapping my energy. But videos like this remind me of my amazing community and that there are people out there get what I’m going through. For anyone interested, a book by disabled/ chronically ill parents in Australia was released recently and I think most people on this channel would really appreciate it! I haven’t got a copy yet, but I’ll be the first thing I buy in my trip to Readings next week!

[@jesscork5500]

Goodness I hope your migraine clears up soon, I literally shouted 'TWELVE DAYS???' at the screen when you said that's how long it had been going for. I cannot imagine how much that would inconvenience your day to day life. Lots of love to you, Claud and baby Roo too!!