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I'm nothing but a mess this morning.  I woke up with a dream of having lost my voice.  It's one of those things that does happen with this disease but I fear this more than all the rest of the things.  I woke up sobbing this morning and restarted each time a kid woke up and wished me good morning.  

My voice cracked a few times this week and it's probably from the dust of sanding cabinet doors, lol, and I'm probably just being overtired and silly.  But, still, it serves as a reminder and it's something I don't want to think about.  Yet, here I am, with my head all in that instead of anything useful or purposeful.

Pray for me this morning? I am feeling pretty off kilter this morning and can't seem to get my head centered on the here and now like I usually can.  We've got a ton planned for today, thank goodness.  DH is off work and we're doing all the things.  I just need to get out of my head!

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Praying. This is a heavy load you are carrying, and of course, there will be times when the future will seem overwhelming. 

Matthew 11:28-30 ESV   :  28 "Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”

"A yoke is a wooden beam normally used between a pair of oxen or other animals to enable them to pull together on a load when working in pairs"  He is plowing this hard ground beside you.

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4 hours ago, CuriousMomof3 said:

I am so sorry you are going through this.  I am praying for peace for you.

Have you started learning AAC, or working to develop skills now so that you are prepared when you need them?  My middle son lost most of his ability to speak last December, we were really fortunate that we had the opportunity to practice AAC skills before that, and as a result he already had some fluency, and we were able to get him communicating pretty quickly, it made a very difficult time a little easier.

Please feel free to reach out if you want to hear a little about what we did, and about some of my experiences with various AAC options.  

 

Thank you all so much for the prayers  It was a truly good day from start to finish. ❤️ 

This is the hardest part of what I’m struggling through and the unpredictable progression. I wish it would follow a route, but then again, my progression has largely been slow so I guess I’m glad it hasn’t been predictable!

Curious Mom, my communication will need to be via gaze. I am supposed to record my voice and I’ve been putting it off. I need to just tackle it. With ALS, we also lose all body movements, so we’re very limited in our options. I have played with gaze software in a university class I took a couple years ago in adaptive technology. It was clumsy and as much as I should practice, I will not. I love my life and just can’t force myself to think of the “when” any sooner than I’m forced right now. After diagnosis I came to terms with the idea that I’m dying. But, lately, I’ve really felt like I’m living with ALS. We are not on friendly terms but I can suffer her and her afflictions and still enjoy life. I cannot fathom not speaking to my littles. I think sometimes that is worse than death by far. Some days this disease is too big for me. 
 

But God.

 

Thank you so very much for your prayers. This morning was very hard for me and not all that easy on the ones who understood the tears.

 

 

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I did not know your story, but your courage and determination comes shining through in your post. Your mama heart and love comes strongly too in just one post and so I am quite sure reaches your children each day in so many ways. 

 I will uphold you in my prayers each day. 

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