This world is so crazy now! A year ago I didn’t think life could get harder than what it had already been. A year ago I lost the only job I had wanted for ten years after just two years of employment. But what impacted our lives the most was My husband’s ex-wife’s life.
A little over two years ago, when I found out the reason why I was always in so much pain and always so tired was from fibromyalgia, my husband’s ex-wife and mother to his two sons, started showing symptoms of ALS. I didn’t know anything about ALS but I was going to learn.
You see, the gene mutation that runs in her family is extremely rare. Less than 1% of the population of people who carry ALS carry this type of mutation. Her own father passed away at the young age of 39. If you remember Christopher Reeves from Super Man, he too had ALS.
So we, the three of us, my husband, his ex-wife and myself, found ourselves in a custody battle with my husband’s parents. His mother is a narcissist psychopath and was trying to take custody of his oldest son and then when it looked bad, both sons...
I believe the stress from this made her gene “activate.” About this time was when she ended up in the hospital for about two weeks. She was in a lot of pain, having problems breathing, & it looked like every vein that could be seen in her top layer of skin, turned a bruised color
Of purple and had burst. You could literally see every vein all over her body. At that time, the doctors couldn’t figure out what was going on. It wasn’t till later that year that she got the answer she never wanted to hear. Every year she would go to Miami U in Florida for a
Research study for a cure for ALS. She knew she carried the gene, the trick was trying to cure it before the gene mutation activated. There was one doctor in particular that was closely working with her on this. She said she had a feeling she knew she had started to show symptoms
Just a week or two before she left for her annual trip. She felt like her tongue was going numb and her left shoulder was feeling weak at times. If you know anything about ALS, your muscles slowly deteriorate and die until you have no muscle mass left whatsoever.
She slowly had to quit doing normal every day things. Eventually, moving in with her brother and his wife. The boys would stay there with them often, helping their mother. It was heartbreaking to watch them, watch her whither away. She tried to prepare herself and her family for
What was to come, but you are never truly ready to say goodbye forever, to someone you dearly love. She deteriorated pretty quickly. In less than a year she was already confined to a wheelchair. She was losing all function of her legs, arms and everything in between.
Remember, organs are muscles too. She finally decided it was time for her to go to the nursing home. Her oldest son who was 16, just over 6ft y’all and 240lbs, was having a hard time lifting her from her chair to her bed etc and when the boys were in school there was nobody there
To keep an eye on her and help her. They tried to have an in-home nurse come but they would never show up and she’d be left laying in one place for far too long. After about six months in the nursing home, around October of last year I believe, she could no longer breathe on her
Own. She watched her father die from this insidious disease and knew what was coming step by step. She knew that having a trachea put in would be the very real beginning of her end. She fought it as long as she could but after multiple rounds of battling pneumonia she said yes
To the surgery. It was so painful for her. She lost so much already and with having the trachea placed in, she lost her voice. Literally. She had a “talking trachea” but because of her cont’d muscle loss, being able to talk would be a major accomplishment. One day though, after
Much work, she was able to say a few words. Her brother recorded them. They were beautiful but heartbreaking at the same time. As she wasn’t able to move herself, and didn’t like the nurses moving her because it was so painful, she developed a bed sore. It was so large and open
They could see her tailbone. She had to have surgery to have most of her tailbone removed, which was very painful on top of the immense pain she was constantly in. She was a fighter though and it was her wish to fight to the very end and she absolutely did. She died in December
And they revived her. She wasn’t aware that she died. She was being transported from a hospital stay due to pneumonia back to her nursing home but somehow her air supply to her trachea wasn’t connected properly. They said she went without oxygen anywhere between 4-10 minutes.
When they realized what happened they rushed her to the nearest ER while they were resuscitating her. It took nearly four days for her to come back. We were honestly worried that she was going to be brain dead from the lack of oxygen. Then in January she died again...
She had gone into cardiac arrest. They were able to revive her fairly quickly and this time she communicated with us after just a few hours. She was no longer able to talk or even mouth words. She communicated by blinking her eyes while her family pointed at letters on a board.
The first thing she said to her mother was, “I died.” We could tell it really upset her. She knew that though it wasn’t her time just yet, it would be coming soon. How do you say goodbye like this? You don’t. You just keep going, knowing what’s to come. She cont’d to deteriorate
Every day something else would change. At the last point I was able to visit with her, she had a special call button propped up by her head because at this point she could only purposely lean her head to one side when she needed to press the call button and she could still blink.
That was it. No voice, no hands, arm or finger movements. No legs or toes. Just leaning her head to one side and blinking. Quickly she lost even those two functions. As if this wasn’t hard enough, at least her boys, mother and brother could go see her anytime they wanted...right?
Until Covid that was. Then the nursing homes went on full lockdown and we weren’t allowed to see her any longer. Not her mother, not her boys, not her sons. Now she was not only trapped inside her own body, she was trapped without loving contact in her nursing home.
We were blessed that she had a respiratory therapist that adored her and would face-time her mother so she could at least hear her, and her son’s voices. It was so hard for them to see the condition she was in. I think at some point after not seeing anyone she gave up hope.
If you have a loved one in a nursing home and you’re able, get them out, do it now! Locking them away without their loved ones is the cruelest thing that could ever happen to them. They need contact. They need love from people who truly love and care about them.
About ten days before Mother’s Day this year her family got the call to come say goodbye. They we’re going to let everyone in to see her but only because she was “rapidly declining” and they didn’t believe it would be much longer. My husband took the boys. I stayed home. To be
Very honest, I don’t deal with death very well and when I get emotionally upset, it sends me into a fibromyalgia flare. I didn’t know how to say goodbye. I didn’t want her family to have to say goodbye. She had just turned 40 and I just couldn’t think anything except how unfair
Everything was. My husband called me from the nursing home, and said that her vitals perked up after everyone had a chance to see her. They gained a little hope but her regular nurse spoke with them and said that she was “rallying” because of her loved ones gathered around her.
At this point, she was a fully aware brain, conscious, soul, trapped in the shell of her body. She could no longer blink to communicate. She was there but she was in so much pain and she couldn’t tell us anything let alone if she was ready to go home. Her mother, brother, sons
And my husband spoke and agreed the loving, kind thing to do would be let her go home to our Savior Jesus Christ. However, the head administrator for the nursing home was already gone for the weekend and nobody was able to set up the transportation to Hospice. First thing that
Monday morning on May 4th she was transferred to hospice and once again her loved ones were able to go in and say our goodbyes. I was honored to be among them. We all had to wait outside and they’d let us in in pairs to say our final goodbyes. My husband (her ex-husband) and I
Went in together. We prayed over her and said goodbye. I asked her to let us know when she made it to Heaven. I knew she was going there but I was so upset with God for taking her, I was half questioning if anything was real. We went back outside for others to see her. When
Everyone had their turn, only two could be in the room with her as she passed. Her oldest son and mother stayed inside. They rolled her bed over beside the large window and the doctor removed the screen so her brother, best friends since elementary school, and others could hold
Her other hand from through the window. About two hours went by before she took her remaining breath. We all hugged each other in our sadness and parted ways. My husband, their youngest son, and I went back to our house. Their youngest had started watching a show called
The Goldbergs. It helped him laugh a little through a very difficult time. He went to get a shower and my husband and I continued to the next episode. The daughter was talking to the father about the two colleges she was deciding between. My husband raised up on his elbow with
A perplexed look on his face and said, “Well that’s just weird!!” I asked him why, he explained to me that the two colleges the Goldberg daughter was talking about were the two that were involved in finding a cure for ALS. He said the one is virtually unknown for anything and
That it’s rarely a college that comes up in any conversations and the other was Miami U, where the boy’s mother had been going to help with ALS research. I looked at him and said, she made it to Heaven and she’s there with her dad! I explained to him that I asked her to let us
When she made it there. If it had been a red bird, a rainbow, or anything else I would have always questioned whether it was her or a coincidence. She let us know in only a way she could and we would know it was her. That day I had two questions answered. She made it there and...
HEAVEN IS REAL! I absolutely know in my heart that Heaven is real, there is a God. Thee God. Jesus Christ died for us, and one day EVERY person will have to answer to everything, every word, every thought, every action we’ve ever done. Prepare yourselves, repent and sin no more.
My reason for this thread is that typically September is ALS awareness month. Remember the #theWaterbucketchallenge ? With everything going on this is another important event forgotten in this mess. Please keep awareness to help find a cure. This is a life or death situation.
She watched her father pass from this. Her children, mother and brother watched her die from this. This is an adult onset disease, but we’ll have to have the boys tested to see if they carry the gene mutation. There’s a 50/50 chance they will. Please keep us in prayer. Our fight
Is just beginning. God is faithful, He is able. He will provide! Thank you for taking the time to read our story.

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