parenting with a disability

Join the Conversation on
parenting with a disability
256 people
0 stories
12 posts
Explore Our Newsletters
What's New in parenting with a disability
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

No, you are NOT a “bad mom”. #Bipolar2Disorder #ParentingWithADisability #Parenting

I always tried to shield my daughters from my suffering, vowing I would parent my children better than how my parents raised me. I witnessed the generational curse of physical abuse and emotional neglect mental illness played in my family’s upbringing. From my grandmother to my mother, both suffering from severe #Anxiety and #Depression that bled onto me as a child. The “cultural norms” of “children are seen, not heard”. Mortified that my mental illness would make me a “bad mom”, always scrutinizing everything I did as a mother. I recent went away (again) for an inpatient hospitalization. I was terrified that my daughters, especially my oldest would resent me. I come home to her eager to present me a letter she made *here’s a portion I’ll share with you* It was PROOF that I was doing something right. That she loved and cared about me. PROOF that I am not a “bad mom” and you aren’t either. #Bipolar2Disorder #Anxiety #Depression #Parenting

37 reactions 7 comments
Post

Covid Jab Flare-up

I had the worst flare up after my second covid jab, to the point that I was struggling to walk, had to get a tramazac injection (which only took the edge off), stayed in bed for two days straight, and weirdly, had some endo pain again. However, this morning I woke up and I didn't feel like I'd been run over by a bus! I nearly cried, with joy this time.

I'm achey but in the normal, tolerable fibro way. I took my kids to the market day at their school where we enjoyed the sun and people and I got to spoil them a bit. I packed the dishwasher and just bathed my dog. And now it's time to rest a bit because I'm learning that Fibromania is a very real thing.

The fear of a flare is overwhelming and it's hard to know when it will end. This one lasted two weeks, with this week throwing me into a pit of anger and despair. It also gave me time to think (and freak out, lol) about work and my kids and running the house as a single mom. I'm going to need to find a better, less stressful way of providing for my girls. I have no idea how, or what I'll be capable of keeping up with - chronic illness does not make for reliability and my schedule can be erratic depending on flare ups, doctors visits, and medication side effects. I also live in South Africa and it's not exactly set up to support any kind of decent career which pays the bills and isn't a CEO position.

Not sure where to from here but I need to get out of my current situation before the stress has me bed bound more permanently. At least I feel better today and I've been able to enjoy some time with my kids and get out of the house. Perhaps it's time to take this better day and do some brainstorming on my next steps.

#Fibromyalgia #Endometriosis #fibroflare #ChronicPain #Singlemom #ParentingWithADisability #ChronicFatigue

10 comments
Post

Picture Books? #ParentingWithADisability #ChronicIllness #CrohnsDisease #EhlersDanlosSyndrome #Dysautonomia #RheumatoidArthritis #PosturalOrthostaticTachycardiaSyndrome

I have a couple of Autoimmune Diseases as well as Ehlers Danlos Syndrome and all of the fun comorbitities that come along with it. I've recently been struggling with a pretty bad POTS flare up, and I can see it's affecting my daughter. She's only three, and I know it's a difficult thing to understand. I recently had an SVT and was taken away in ambulance. She was terrified and she still talks about it. She's extremely smart and curious and my husband and I always try to be honest with her without scaring her. She loves reading, and I really think a picture book would be helpful in explaining things to her. We want her to understand that sometimes mommy might need to go to the hospital or stay in bed, but that doesn't mean she loves you any less. Any suggestions?

4 comments
Post

Can the other parent us your disablility agaisnt in court re: custody? I have lupus and ptsd from him. Esp if your were to get on ssa.

#ParentingWithADisability

4 comments
Post

#ParentingWithADisability

you know children are narcisstic when they put upset upon the dad's and mum's. That's not going to be my child.

Post
See full photo

Holidays: Expectation versus Reality

Weeks ahead of Halloween versus the day before. I had a plan. It was to begin weeks ago. Instead it began today. The day before Halloween. I know you feel this. Life happens. Harder and with a bigger bat for some.

Somehow I manage to pull this off for my girls, every year. I haven’t figured out how. It’s not always pretty, but everyone is happy. #ChronicIllness #ParentingWithADisability #Fibromyalgia #Humor #EhlersDanlosSyndrome

5 comments
Post
See full photo

Parenting with chronic illness #CheerMeOn

Survived day with both kids while having horrible flareup 🤦🏻‍♀️ heating pad and ibuprofen are my best friends tonight #ChronicIllness #ParentingWithADisability #CheerMeOn

3 comments
Post

Need advice

Any parents out there with sever EDS and/or chronic pain? How do you take care of your children? I am struggling to do the basic things for myself and my children like getting them dressed, feeding them and myself, ect. How do others manage this and give their kids a normal childhood? #EDS #EhlersDanlosSyndrome #ChronicIllness #ChronicPain #ParentingWithADisability #ParentingWithChronicIllness #GeneralParenting

7 comments
Post

Fighting my daughter's battles

Do you ever feel like you fight your child's battles for them? Sometimes I do it, without even realizing it. Suddenly, I realized I've pushed her right out of the equation, and I'm stripping her of her abilities to navigate this world herself - which she'll have to do eventually. Now that I'm aware of it, I'm working to back off and let her take the lead. She's getting older, and more aware of the world and it's simultaneous good and bad. She's going to have to learn to figure this out at some point, and I can't keep stepping in front of her when it's imperative she learn to step up for herself. #Parenting #ParentingWithADisability #Autism

7 comments