With ALS there two big milestones you must consider (there are probably a million milestones…but these are the two that I think about most often: a feeding tube and a ventilator.
A feeding tube is an easy yes for me. It doesn’t seem too invasive, I can still eat if I want. I’m still me…just with a little help.
A non-invasive ventilator is also an easy yes for me. Wearing a mask to breath – cool, no problem. I can still travel, communicate, and be present.
An invasive ventilator – this is where things get tricky. I picture myself, paralyzed on a bed – no longer able to speak, hug, touch others. Only being able to communicate with my eyes. A invasive ventilator could significantly extend my life, but would that life have meaning? Would that life cause more pain than joy? I don’t know. I don’t know what the right answer is…the good news is that today I don’t have to know.
And for March 4th – A very meaningful dinner with Jacob’s sister. She is an amazing support person who is so kind to Max. Everytime she comes over he asks her to swing, watch his favorite youtubers, and play – and she does. I’m very grateful she will be here for Max when I’m gone.
Marianne Has ALS 
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