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johnnyd

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re old site

hello evi. I actually read your concern on the old site. This is the new site. Same thing. Re-register as some of us already did. I'm sure she will notice the same and joy will soon join us here again. if I can help. I am here also. it's sad to say. but your father is probably right. I'm sorry. But unless there can be a team set up 24 hours and lots of $$$ . she is in the right place for now. I wish I could help more but all I can do is tell you what living with this disease is like. And the stress that me and my family are going through. 5 years now.

john
 
Hello

Finally found you all again was trying to figure out where the forum was, when I saw that things had changed thought that the site I was posting on was merged with the other ALS Canada site which was online.

Anyhow glad to be back and hope all is well with everyone. Sorry to hear that things have not changed much for you Evie. It must be hard to come back after 2 years to find the family life is so different. The way things are are not the way you want to see them understanderably so. The dance is hard to break into when all are comfortable in their steps and do not wish the steps to change. All your efforts to hope otherwise seem to be draining you.

This serenity prayer has helped me so much I found it on my ALS social workers office wall, it is used in many recovery programs and I found it strange to see it there but understand the reasons for it now.

God grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the WISDOM to know the difference.

During my brothers ALS earth journey I found that I was fighting so many useless battles draining me of some energy that could have been used to give my brother and myself needed strength to fight the big battles.

Sometimes when we are caught up in our own personal battles it is hard to step back and accept that some things cannot change and some people will not change. Because we want them to may take up precious energy
and we need to choose our battles wisely. Move on to the things you have some power over and change the things you can.

I agree that work and life will someday find its way to you and maybe all your dad needs right now is to have some way of covering your overhead try to see if you might qualify for some social assistance. Your mom and your relationship is so important and she could use your energy as her daughter as an advocate for her wishes perhaps with your dad and your brother and in the care centre she is in.

ALS is such a harsh disease and it leaves its scars on us in different ways
your battle is with your relationship with your mom and the care you can show her right now. I hope that you do not waste anymore time on what might have been in exchange for what could have been while you struggle with your pain. As I told you before living in regrets is not what you want to be left with this includes your relationship with your dad as well as your mom deal with things in a calm and strong manner and let your dad know what your desires are which include your mom. You cannot be wrong when you choose to show love and care for family no one can fault us for that the one thing that can be said is the care you provide will be shown in your moms face. That one prize can never be taken away from you nor should it be denied. I am not saying to throw all responsibilities to the wind but there is a balance to life and your true self must be respected.

I hope you find the strength to choose the battles that can change and leave the ones that can not. When we stand up and take our lives into our own destiny then doors will open and things can happen that we may never have thought would. Life is strange wonderful and sometimes unfair but it is our hand to deal with and no one can change the paths more quickly than us. Choose wisely my friend and the strength and love you feel for your mom will guide you.

I wish you all the best and am glad to have finally found this site again.
Your friend Joy
 
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