do you ever feel this way

[kelly]

I just feel exhausted...at the moment...for the moment! I often feel like this is an out of body experience..this can't be happening to our family. Then my 6 year old asks, what will happen if Daddy falls when we are not home. Trying to keep normalcy for the kids....this is the new normal. Not the normal we ever imagined.... or ever wanted. Feel pulled in every direction. I want peace for my husband..trying to keep him going..not easy. I am searching for the supposed "lesson" that we are supposed to learn from this experience. Yes, we experience small miracles..and kindness from friends..and strangers..and that is what helps us fight on. Feel better already..thanks for listening. Fondly in SS

 

[DeeMichelle]

Kelly you express it so well it seems surreal I know, but is real. Your post reveals the amazing job you're doing - remember to care for you too- carers need care!
Dx

 

[nurburch]

SS.
This diease stinls big time. We too are faced with the questions....Dad can't be alone now at all. It is hard
to balance normal. For us taking care of dad is the new normal along with baseball, volleyball, and work
everday for me. the kids are amazing. Mine our 15,13,9. We still wish the nightmare would end. I am sure
you are doing a great job. treasure each day.
Sheryl wife of scottie

 

[whimsy_1971]

I too have wondered what is to be learned by this journey.

They say God does not give to you what you can not handle, but I sure feel as if Im at my breaking point. I have tried to figure out what on earth my husband did to deserve this, or what I could have done.

I told my friend that I hope to bring something good out of this journey, and I hope to figure out what that is suppose to be and use it. There has to be something good come out of something to horrible.

 

[baker5131]

feel the same

Kelly, My husband was just diagnosed in april of this year and we felt our world quickly crumble. Our dreams of moving to the country(on land we already bought) have been put on hold. Having lunch with my sister one day she said"I know everything happens for a reason, but I honestly can't see anything good about what's happening". Since I was all cried out for the day I calmly told her that in fact our whole household had changed for the better: suddenly our kids were jumping to help with everything (like Nurburch in Ohio my kids are 19-14-9), my husband shows emotions he has not really expressed in our 21yrs of marriage (been together since I was 14 maybe this is why God put us together at such a young age), we love each other on such a deeper level than we ever imagined, no longer is a sock on the floor or a dustbunny under the couch a cause for concern, and we no longer take things for granted (Yes so much has changed in just 1month) But the most incredible GOOD thing that has happened is, that my husband is creating, for the first time, a close relationship with God and I am able to share these good things with my friends and coworkers so they too will know to live every day like it was the last and don't take things for granted. So admist all this horrible stuff that's happening to us and our families just remember to find some of those good things.
God Bless, Kim in Corpus Christi, Tx

 

[CindyM]

We had a wise PAL who used to visit before he passed. Andres posted a lot of things that made sense to me, but one thing that sticks in my mind was that he used to say that one or two in about 100,000 people get ALS any given year. He used to say, "it has to be somebody, why not me?"

He also used to say, "Don't ask why, ask what for?" Meaning (I think) if you or your loved one is one of the few to get this awful disease, asking "Why" takes us in circles. I think Andres uses his limited time on this earth to learn about himself and develop his relationship with his wife Cialis.

I see nothing but courage and noble effort around here. Maybe that's what he meant by "what for."

 

[gagirl]

When Your Hut's On Fire

WHEN YOUR HUT'S ON FIRE_
The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming. Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his few possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out, "God! How could you do this to me?" Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! "How did you know I was here?" asked the weary man of his rescuers. "We saw your smoke signal," they replied.

_THE MORAL OF THIS STORY: _
It's easy to get discouraged when things are going bad, but we shouldn't lose heart because God is at work in our lives, even in the midst of our pain and suffering. Remember that the next time your little hut seems to be burning to the ground; it just may be a smoke signal that summons the Grace of God.

 

[kelly]

thanks for the notes

Hello Everyone,
Thanks for your responses. That moment passed...and focusing on the here and now. Have been able to get my husband out on his recumbent tryke the last couple of days. Healing for us all. Cindy, I do remember Andres posts...they were the most amazing couple. I could really relate to them because Andres was so young. They had an amazing spirituality. I often go back to read their posts because they were so uplifting. Tomorrow we meet with social security..fun fun. thanks again. Kelly