My heart goes out to you. I have a 6 year old, and I feel so sad at times that she has a Mom like me with these conditions. I lay on the couch and bed so much because of extreme fatigue. When she was playing b arbies I saw her laying a lot of them in the beds. Someone asked her why they were laying down, and she said because they're the Moms and they dont have any energy. It broke my heart that she has processed all of this as such a common thing in her life.

Once someone told me to focus on the things I can do, like loving her or being able to be a good hugger. It's so hard though. Just know you're not the only one and there are other people who truly understand. You sound like a wonderful Mom! Gentle hugs.

they are resilient. my kids used to bring me something to eat for dinner, when I did not come in from the car, sitting in my own driveway asleep against the car door, after work (i could not do the walk transfers sometimes and would sleep for an hour or two in my car, work, kids and single motherhood and this disease freakin' hosed me). here's the outcome since they are now almost a decade older: they are more interested in auto immune diseases in general and more empathetic in particular. the other good news is as they enter puberty, pre adolescence and adolescence they become normal narcissists and super focused on their own life and you become launch central.

for now use your feelings and your brain to be awesome, or might I say to continue to be awesome :)

depot

Your son will adjust. I remember feeling so sorry for my kids, but then I realized -
1. They have me. I'm not dead. I'm not overseas. I'm here. I'm dedicated. Some children don't have parents or have deadbeat parents.
2. I can still spend quality time with my kids. It was reading to them every night no matter how I felt..tucking them in...playing a board game or coloring. It was taking them out to a drive through and sitting in the car eating ice cream. It wasn't playing ball but it was something!
3. There is hope. Including your child in what you have and giving them a reasonable time line of how things take a long time to improve teaches them patience, kindness, and hope. It will also FORCE YOU to keep trying new things until you get to something that improves your quality of life.
4. Along the same line as forcing you - you refocus on the here and now. Your child will totally understand as he gets older. For now, the sooner you find a mix of drugs that helps, the better it is. Do all your research/have all your anxiety when your son is not around. Then let him see you in action getting doctor appts and trying something new to see if it works. He'll soon understand that you are a fighter!

Hang in there. Force yourself to do something with your son every single day for just a 15min window until you feel better. Also, give him opportunities that are wonderful that may not involve you. Example: Summer VBS while you stay home, overnight sleepovers with friends, letting other relatives take him to things you want to. They will make memories too!

you all are the best! thank you for lifting my spirits and making me feel stronger and encouraged.

PS - just another year or two and your son can have loads of fun in Tball, Basketball or soccer. All you have to do is get him to practice and watch the games! It IS doing something with him. And it's so much fun! It's just hard at 4yrs old.

My father's mother had very crippling RA. Back in the 30;s & 40's, not much could be done. My dad was the oldest of 6 children, and would do a lot of the 'work' around the house. He did not resent it, he was happy to help his mother. As a result, he had compassion for those that needed assistance, and my mother got to marry a man who had no problem jumping in to help cleaning, cooking, help with the kids, laundry, etc - back in the 50's, this was definitely not the norm.

I hope you find something that helps you soon

I feel much the same as reply 6.
My nephews & nieces watched my sister struggle with RA from birth on.
Very caring & protective because of that. Outside of that your A typical kids.

Felt pretty guilty when health problems prevented me from participating in my younger daughters events. Spent a lot of time beating myself up & it got me no where. Thanks be to God she was older in jr high high school.
At 4 kids mimic & live in the moment. So much growing to do, so much excitement coming his way. The older he gets the more he'll understand. being there for him supporting, encouraging, loving is what's important.
We worry about the negative yet there's positive that can come from this building character some never get through life.
Hugs
Sammy

This post breaks my heart. Unfortunately this disease is a part of who we are, and you can't hide it from those closest to you, including the kids. Don't ever be upset with yourself. You are doing the best you can and that is PLENTY.

I worry about this as I am thinking about having children soon. I was lucky enough to grow up with healthy parents. That was all part of the shock I got when I started getting sick and was diagnosed - But my parents never had this. why me?!? I questioned my ability to raise kids and have them see me in pain and struggling with this disease and my work, etc. But good days and bad days are all part of the package, and your little boy with be grateful for it in the future. He will learn to not take his health for granted. He will learn compassion and empathy for others.

He is lucky to have you :) Hang in there!!