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i have lyme disease in late stages, and recently symptoms worsened. finding it hard to do things like pick up my four and a half month old bebe, breastfeed, and give him the attention his energized and evergrowing self needs. wondering if anyone here is coping with an illness or disability...
how does this affect parenting for you?
how do you cope?
how have you and your child found balance (or not)?
how does this affect parenting for you?
how do you cope?
how have you and your child found balance (or not)?
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Re: disabilities
Fri, March 20, 2009 - 9:35 PMHi, I am sorry that you have not been well, and that is has been affecting how you are able to be with your child.
I have pretty severe arthritis in my left ankle. It makes it hard for me to play with my son, and carry him a lot. I get upset about it often, feeling sad about what it is taking away from me, and my son.
But mostly, I try to work with my body. If it is a painful day, I take extra time to sit on the floor and play, or read extra stories.
I try to keep positive, and sometimes even push my ankle too far, just to not sacrifice being able to play around the way my son wants me to. But mostly I just learn my limits, and find other fun ways to spend time together, that is less painful for me.
I would say we have balance. We don't go to the beach or park as often as he'd like, or I'd like! But it could be worse!
I hope you feel better! -
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Re: disabilities
Sat, March 28, 2009 - 12:54 PMthanks, katie, your post is really helpful and encouraging. i'm sorry to hear about your arthritis in left ankle. i'm working on accepting limits more. it seems when i can do that, i'm not as anxious about not being able to lift bebe, etc... and bebe often responds likewise, more relaxed or more anxious... i see that bebe is also syncing up with me.... he's learning to be more patient if i'm moving slower.
the hard part is not wanting him to see me in pain or frustrated or sometimes in tears. do i hide these feelings from him? -
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Re: disabilities
Sat, March 28, 2009 - 9:33 PMI don't hide them, just make them more understandable for a child. There have been times where I get frustrated or sad about not being able to run around with him on a bad ankle day. I just tell him why I am sad, even if I am not sure that he understands exactly yet. But I think it is good for kids to see a range of feelings and emotions, as long as they understand it and that it isn't too intense or something.
The way I see it, is every parent can offer something unique to their child. I just can't offer anything sporty! And some days are not bad, or my ankle feels ok so we run around, and I just pay for it later! (totally worth it!)
And there is a lot of value in having extra story and cuddle time!! -
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Re: disabilities
Sun, March 29, 2009 - 6:41 AMI have friend who se wheelchairs and their children grew up riding on dad's lap or on the back of mom' chair. I heard of a wonderful-sounding woman, never met me, from the nurse practitioner who was her breastfeeding counselor - this mom had serious congenital limb reductions and was a single mother by donor insemination who got the help she needed (she;s from San Luis obispo hwere there is a fantastic movement promoting breastfeeding) to make accommodations so she had a god extended nursing relationship with her baby.
i live in berkeley, where the disability rights and respurces movement really startd, and there are a lot of support resources for parents with various disabilities.you might want to find a paretns' group where moms and dads with all kinds of special ways of living can share ideas and friendship for taking care of th wee ones...
most babies and toddelrs, and many older kids, loVe being pulled in some kind of a wagon or other wheeled conveyance...is that a possibility with our ankle/ if not, cold both ou you enjoy one of those little cart-scooters and have a good time pushing around on the floor or in a park? i got introduced to these scooters whenmy aughter was four or five and they plaed all kinds of games on them at the YMca, incldluding a game of :scooter hockey' that as hilariously goo fun for the ougner kids AND the teens. the carts aren;t expensive.
speakaing of the ymCA, does our little gy enjoy swimming and water activities/ most ys and some othe community groups have a warm pool that's emant for tots and for eople who are disabled and those little-kid swim and splash times can be terrific 9and asy on the bones and joints0
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Re: disabilities
Tue, March 31, 2009 - 12:13 AMHi Laurie,
I am a right leg above knee amputee. I have a prosthesis but don't use it much. I tend to use crutches more often. I am 22 weeks into my pregnancy, so I can't tell you much yet. But I have heard many good things about the child adapting to the parents disability. I have seen many TV shows on parents with severe disabilities getting along with their children just fine. It just takes patience and a willingness to figure out how to do things differently.
Here are two helpful links:
1. A good book on pregnancy/childbirth & disability (may have info about raising children too!)
www.amazon.com/Disabled-W...ref=sr_1_26
2. A place in Berkeley, CA that specializes in helping disabled families adapt:
lookingglass.org/index.php
Hope this helps! Trust me, you're far from alone!!!!
