Is it the longing to be able to do things other people can do easily? I know I often wish I could get up and run with my son, and at times it's more then a wish it's a need and I have to just find some other way to chase him down.

I think that this is the hardest thing for me about being a disabled parent, not being able to run with him or dance with him and play with him in a physical way that we both could enjoy.

I have found ways to compensate for being disabled, even making it fun from my chair but deep down I feel bad for my son that I can't play with him the way I really want to. What do you find to be the hardest part of being a disabled parent?

I grew up with a disabled parent, and remember well my father's feeble attempts to play ball with us. It was a total failure, my brother and I were deathly afraid of hurting him.
But what I remember best is that he was always there for us 6 children, always at home, always ready to listen and talk. It was wonderful, all of us spent many hours with him...we had him all to ourselves.
And none of us would have traded him for anyone.
It isn't what you can do with your child that matters, it is much more about whether you are there for them, or not. And many, many parents were not really there for their children...they had busy lives of their own, and only spent minimal time with their children. But a wheel chair bound dad, was the best possible dad.

Thanks for what you said Michael, I am here for my son all the time and since I am disabled and can't work I've made taking care of him my full time job. While it's very rewarding, it's frustrating at times because he knows how to get around my attempts at parenting, specifically giving him a time out. He will run to the bedroom and lock the door when he's done something bad and thinks it's funny that I can't catch him or force the door open.

Even so I wish I could do more for him. He's autistic and only 10, but he's grown up so fast, I remember a time when I was able to pick him up and hold him on my lap, not able to do that anymore, not enough lap for him to sit on...Hehehe.

Pamster, I know how it feels deep in your heart it hurts, when you watch them out the window and their laughing, you want to be apart so much. But then they come in(I have 3) first thing they do is sit down and tell me all about. You see, since I got sick God has shown me another way for us to be close and we are. So when your sad and wishing you could do what they do, remember aleast we still have eyes to watch the beautiful things are sweet babies do and we can still love on them when they get done. I'll tell you something elese, when they have a problem or want to talk, they will come to you first, because guess what...you have the time!! God Bless You, Tammy72

I'm not actually "disabled," but I am a mom, and I have chronic med conditions that can suddenly and severely get in the way. I have been lucky so far in that I have had very few bad days, but when I did, particularly when my kids were really young, it was very difficult because it was necessary for my daughter, as young as 5 yo, to do things for me like get my glucose pills (for hypoglycemia) or look after her brother while I recovered from a nasty headache. It's easier now, since they're older, but my son is autistic, too, so there's always "excitement," if you know what I mean.


LIZARD

Thank you Tammy & LIZARD. Not feeling as down as I was last night. Reading both your replies made me feel better.

its the lack of frustration cause i understand cause my mum has been
disabled for about 14 or 15years now.

Hi, everybody:

I am a disabled single mother with an adopted two-year-old baby boy. I have a police officer boyfriend, but he is still in the U.S. and he is trying to come to French Polynesia so the three of us can live together, love and support each other, and just be happy together.

My main disabilities are generalized internal chronic RSD, hypothyroiditis, epilepsy, and asthma. To me, there are five hardest parts to being disabled and to being a parent:

1) It breaks my heart sooo much to see my two-year-old baby boy suffering physically and emotionally from such a horrible disability as Cystic Fibrosis. He almost died so many times I lost count. Fortunately, I was able to get him a transplant of one heart, two lungs, and two kidneys. I was told by the surgeons who operated on him that it was very rare for someone his age to get the transplants on time, that is, before his disability takes him to a better world.

2) I cannot always do all the activities I would want to do with my little treasure, whether it is because of his transplants or because of my own disabilities.

3) I do not always know how to reassure my baby when he sees me suffering physically and emotionally so much because of my disabilities, especially my generalized internal chronic RSD and hypothyroiditis. Epilepsy and asthma are not so hard on me.

4) I and my son feel rejected by some non-disabled parents and their kids, as if I and my son were going to contaminate them, even though none of our disabilities are contagious.

5) I have to live, 24 hours a day and 365 days a year, in fear that CPS will come and steal my child.

Another thing that is bad, is having a (ex)spouse who treats us like a leper or something not worth helping. I had a seizure in bed one morning. I had already told my (ex)wife what to expect and do if I had seizure. All she did was sit and stare. She didn't help me at all!!!!! A year after she left me, she told me that she had wished my disabilities would "just go away". It was then, that I decided to divorce her instead of trying to reconcile.

On top of that, four years after I divorced her, she finally admitted she was disabled, which I had known for more than ten years. When I had tried to get a psychological evaluation done on her prior to the separation, she refused. Not to see if she was crazy or anything like that. But to get a further understanding of why she behaved the way she did. When I divorced her, my parents, step-mother, her mother and maternal grandparents were there. Right after it was finalized, my (ex)wife started running around to every family member present, individually, crying like a baby. It was behavior like that, that I had to deal with for four years(before the separation). She was in denial about my health problems, and her own!!!!

I wish on the feel good days, that they would be every day. I have two daughters, ages 5 and 8. I feel horrible that I cannot do everything that I attempt with them. My husband has two sons from a recent marriage, ages 9 and 7. They all have each other to play with but there are days I want to jump on the trampoline, bike ride, and so on. I am able to do those things few and far between