Long post warning..... We have been walking lately through a long and deep valley hand and hand. Im hoping Tuesday will bring us some relief. We see a speech specialist to help get us equipped for the future and what it may bring. John began to have speech issues before we even knew he had ALS and that was the first thing he lost.... His voice. Although Matt , Nick and I still could translate what he was saying if we listened very carefully and were in the same room ,usually looking right at him, we combined hand gesture, facial expression to fill in where his voice may have failed. Communication became quite exhausting for him and sort of frustrating for all of us because sometimes we would just smile and nod .... You know youve done it before , when someone says something , you ask them to repeat it and you still dont understand but act as though you did. A voice is unique to yourself , you can identify someone just by their voice. A voice can soothe you weariness when it whispers I love you .... When its gone a part of that person seems to go with it. Henry Wadesworth Longfellow said , the voice is the organ of the soul . So after the last few weeks of seemingly only bad news and many disappointments that have piled up, one on top of another..... Tuesday we have a Boston adventure ! Well actually Waltham adventure and meet with two wonderful experts in speech augmentation to find a better way to bring a more personnel voice to John and my life. Its been real Ryan ( his synthesized voice on iPad) but its time you move on! I want a voice more like my Hunnys real voice sweet and gentle and hear him whisper I love you babe again. You never realize what a gift speech is to someone and the ones they love until your world becomes silent. This is a drive to Boston that I cant wait to make!! Pray for us please:)
Posted on: Mon, 21 Apr 2014 00:58:01 +0000
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