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coming to terms mentally with LGMD
My Daughter Is 25 yrs old and suffers with LGMD2A, and is the middle child of my 3. She is beautiful and has a lovely sense of humour. Unfortunately she struggles with coming to terms with this terrible muscle wasting disease. My Daughter is the middle one of 3 children. She finds it hard and gets extremely upset because she is not like them. I don’t know how to deal with this a it upsets me so much. can some one help me to deal with this?
Re: coming to terms mentally with LGMDHi jacquelil14, welcome to the forum.
I don’t what it is like to be a parent but I can only imagine now difficult it must be to see you child struggling physically and or emotionally with a condition. I think there have been some other threads on the forum about similar issues and I will see if I can find them.
I have my moments of feeling like that but in my case my condition developed in such a way that by the age of 6 there were clear differences in ability between myself and my peers, am wondering if it made it easier to accept – who knows, we are all different! I have a sister ten years younger and when she was a teenager I do remember a few occasions when I wished I could have done things at her age, I think these are natural feelings but it is not good to let these feelings dominate for too long in my experience.
Am glad you have joined us and hope we can help in some way. Keep checking back as we have a lot of members and some who pop in from time to time and may not read posts for a while.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: coming to terms mentally with LGMDI think its quite natural to experience these feelings from time to time i know i did and still do, I have a younger brother by 3 1/2yrs and he travels all over with his job and at times I think it would be great to do this, but on the other hand I think he feels guilty because of the things he does and i can’t. We all have feelings brought on by our conditions but I think it is important to remember the positive, I have met some wonderful people through having LGMD that i never would have met otherwise. As Sarah says its important to try and not dwell on these emotions but it can be easier said than done.
Re: coming to terms mentally with LGMDHere is a thread I remember on acceptance and another from a parent although this one appears to have the original post missing it has some interesting insights.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: coming to terms mentally with LGMDI often think MD is cruellest to the parent, I cannot imagine the anguish and so forth you have gone through along side your beautiful daughter.
Finding the positives to focus on is hard but necessary, she will have episodes of anger and resentment because of the things her brain is all set to do that her body will not comply with. But she has a unique perspective on life, she will see and understand things differently and that can be refreshing.
Humour can be a crutch sometimes, if only to break tension. You and she must have a strong trusting relationship if she confides her upset in you – I always hid mine, kept it to myself and forced a smile on my face [it bit my arse years later though].
I hope you can find some support and understanding ears on here.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
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