I have to admit you're right about the way people assume and judge those people with disabilities that can't easily be 'seen' it's not fair but our society seems to still place so much weight on appearances, it's just the way it is still unfortunately. I definitley feel for you KennyJack, I don't get that kind of judgements thankfully but I do get a lot of:

"Wow you get around really well, how do you do it?" or "My hat's off to you darlin' you are amazing..."

That is from total strangers when I go out into the world, usually I can see others looking at me getting around with admiration. I always tell the clerks when they ask, "Do you want help out with this?" I reply, "Nope, I got it down to a science, I am my own shopping cart." And then I take the bags and load up my lap holding the handles in one hand and using the other one and my foot I navigate to my car, sometimes it's awkward but I feel empowered to do this and proud I still can, you know?

It's not easy being disabled, and I have found that you should enjoy what things you still can DO and not dwell on the things you can't. That just leaves you feeling empty and bad inside. I'm sorry people treat you that way KennyJack, but at least you can talk about it here and people here won't treat you that way. If you need to vent we're here for that too.

I know I have terrible feelings of guilt because of my disability. I'm a lot like KennyJack in that my illness can't be seen from the outside, unless you look deeply into my eyes. But I live with constant pain and weakness, and I know it has caused my children to experience certain disappointments. I can't always make it to their ballgames or recitals, even though I try my best to get to as many as I can.

But like others have said, I spend more time with my children now than I ever did when I was "normal" and working. I listen to them and do things with them, and we have bonded in a way that is so much more special than what we had before. Even my seventeen-year-old son trusts me, and comes to me for long talks and advice.

But the one single thing that keeps bothering me, even though it probably sounds silly, is that I haven't been able to pick up my little girl and hold her since she was five. That was her age when I became ill. She's a very small statured girl, and she loves to be held. So even now she is always coming up with ways for it to seem like I'm holding her. She will get behind me and lean over my back and shoulders when I'm sitting, or stand on a step-stool and wrap her arms around me when I'm standing. And when she does this, she will put just a portion of her weight on me and say in that wonderful bright voice of hers that I am "really sort of holding her". I'd love to be able to pick her up just once, or give her a piggy-back ride. I know it would make her day.

Oh that is so sweet! I can appreciate that feeling Idealist, I am glad you posted about it. My son weighs too much to be picked up anymore at ten but he likes to lean on my lap such as it is and I put my arms around him as he balances on my one knee and thigh. I miss holding him, I nursed him until he was just shy of two because of the reports that breast feeding helps with preventing certain cancers and it runs in the family, so I wanted to give him the best start I could. I attribute a lot of his affectionate nature to the close binding we formed due to the nursing.

Sometimes when I look at him I still see the cute baby he once was and I miss holding him. It's a comforting feeling when I hold my arm around him on the couch and look over at him and see the baby he was, it's really a nice feeling. I know he liked being held a lot too, and he likes it when we sit on the couch with him like that. When he was a baby I could hardly put him down he'd cry to be picked up again. I know it's really a primal urge to want to hold our kids like that, so it's great that your daughter reconnects with you like that Idealist. I was sitting here seeing it in my mind as you described it. Thank you for posting, I really appreciate you sharing what you did.

Well,i feel like i am a big burdern on my daughter.
She ,of course says i'm not.Yet i feel as if i am!
I don't feel like walking around the mall anymore,just because it's fun to window shop.
I go to the store when i have to and get right back out!
I have a picture of us up on my fridge from one of those silly
photo booths.It's been 3 yrs since we have gone alone for fun!

We used to play around by poking one another and wrestling around..Well now she says she is afraid to touch me because there aren't many places where i don't hurt now!
We are VERY close and we hug all the time,but we don't play around like that anymore.
I had to stop the long bike rides we used to go out on...
When i am in one of my flares..She is my caretaker!!!She wont leave my side!!
I tell her all the time.I am suppose to be taking care of her.I worry that i am scarring her......
I don't know what i would do w/out her...
I just hope when she gets older she doesn't have resentments toward me.

I'm so sorry you're in so much pain ~KELLWANTSANSWERS~ I really do understand, but my son isn't at a point where he's taking care of me, he will push my wheelchair around out in public for me but that is more to keep him anchored to me then to really help me.

I'm so sorry you have so much pain, it's so hard to live with pain. I have chronic pain myself and though I take meds it doesn't get rid of all the pain. I hope you see a pain specialist for help ~KELLWANTSANSWERS~ because they are out there to help people like us.

I doubt your sweet daughter will resent you when she's older, she's going to love you no matter what. Just know that in your heart that she WANTS to help you and will always love you, nothing can change that. I understand about not wanting to window shop anymore and going to the stores is just for neccessities rather then for fun stuff or to window shop, I am like that too.

I hope you're having a pain free day today, and if you're not seeing someone for it maybe you can talk to your dr and get a referal, no one should have to be in pain 24-7, but there are many of us who are and it's a real shame. I really feel for you ~KELLWANTSANSWERS~.

I am Laura. I have MS and a Congenital Heart Defect. I was 37 (yesterday)
I am married. My kids are 14 and 6. The hardest thing for me is being tired and not being able to do alott with them.

Laura
Orlando Fl

Welcome Laura,

I am glad you posted. I understand feeling tired and not being able to do a lot with you kids. I wish I could do more with my son too, it's a hard feeling to accept. Welcome to NeuroTalk.

Like most everyone here, my endurance is practically nil...I'm more of a sprinter . But it seems as if everything that my son is interested in involves a field waaaaay out in the middle of nowhere, and having to climb a couple of berms to get to it. So the hardest part for me is just in arriving....the heart is willing, but the flesh is weak.

I also have brief pangs of wanting to be able to run, chase, rough-house with my son....we've modified most of those to suit us, but I agree that it's not the same.

I also agree wholeheartedly with the comments about kids really just wanting our presence/time. If you talk to kids today, whether their parents are AB or otherwise, they'll tell you the same thing themselves. They just want us to be there.....accessible.....approachable. Those are the things that they'll always remember and value.

This is a good topic, Pamster. Thank you to everyone for sharing your stories...it's healing to share these things.

I agree with you that it's very healing to share our stories like this, HoosierMama. I wish I could talk with my son better, it's so hard to communicate sometimes because he's autistic, yet he is doing much better even so it's really hard to know if he really gets what his daddy and I say to him sometimes. MOST of the time I think he does, so it's really just a matter of him being able to communicate back to us.

I wish it was easier for him, but we accept that it's going to get better with time, I am just glad to know he's reading finally! That is a huge achievement and I know he is reading sight words because his teacher tells us so and that she thinks he's ready to move up to the next level acedemically. That was so encouraging to hear.

Just had to share that. We saw her at walmart this weekend and she was tickled pink Jackie got to meet her four year old son and they interacted a bit, he gave my son a tootsie roll and Jackie thanked him. It was so sweet. It was wonderful that we got to see her and talk to her like that about his progress.

Hi, I'm Donna and I wanted to read this thread because I work as a advocate for both ab parents a disabled parents. But I found lots of you very inspiring. I wanted to tell Kelly that her daughter will always want
to do things for her.

THe reason is that she knows that she is appreciated, loved and that you
need her.

And Pamster, your son even though he is autistic, will always love you,
and want to please you. It shows in your writing about him. There will
come a day that he will want to b e a lot like Kelly's daughter.

And I am impressed by the other parents and kids too, just don't remember
their names. But you are setting good examples.

I have three boys with varying degrees of disabilities and I have to say
that in the last few years when I've had varying degrees of disabilities for
various times. When I've had dislocated bones, and concussions or post concussion syndromes, they have been there. My youngest has seizures
and he is always trying to learn the things to make my live even more
easier.

I am so glad that he is part of my life.

Donna