The deepest pain

We are experiencing the deepest pain right now. It’s been quite some time since I’ve talked about the physical side of this disease. Quite frankly, I don’t want to talk about it. But I think it is so easy to live in ignorance of the pain in this world. It’s so easy to put the blinders on and only see the smiles and balloons and birthday parties. But the reality is that when something like ALS crashes into your world, it’s quite easy to become disillusioned with a world that has a more sinister feel to it.

You see, in my world, instead of balloons and birthday parties, I…

… hold my husband’s legs down so they will stop bouncing.

… feed him through a tube in his stomach.

… wake up every night to reposition him so he’s more comfortable.

… suction him so that he can keep his airways clear.

… hold his jaw so it doesn’t shiver uncontrollably.

… give him morphine to help him breathe easier.

… listen as he spells what he needs.

… watch as he decides how much longer he wants to fight.

Tim has had two really rough days. Yesterday he struggled through coughing for 8 hours. I was sure I would be suctioning him all night, but thankfully, with the right conconction of medicines, he slept through the night. I had been hoping today would be better, and thankfully he hasn’t coughed as much. But he hasn’t really been able to rest much either. Just as he starts to relax, he will start coughing again. It is clear that he is not particularly comfortable today.

I pray that tomorrow will be better, but know that it might not be. But whether tomorrow is good, bad, or somewhere in betweeen, we know that God is God. He loves us and cares for us no matter what we are facing.

Please pray for us. Pray that we will all be ready when the time comes. Pray that we will feel the strength we need from Him who is all strength.


And by the way, a quick update from our benefit event. Thanks to the hard work of a few wonderful friends, led by Chrissy and Kari, our benefit event raised $12,436!! Praise God with us!!


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