God to the Rescue!

We had an incident last night - one of the insidious symptoms of FXTAS. After my aide and I got Vince into bed (which is never easy - always a trial in itself for various reasons), I was giving Vince a drink of water like I do every night. He often seems to be thirsty by the time we get him in bed, and I need to make sure he gets enough fluids, as everyone needs. He wouldn't be able to ask for a drink, so I offer it every night. Sometimes he takes it, sometimes not.

Last night I held up his head like always and put the water to his lips. He took some, but then I thought he had water in his mouth that he wouldn't swallow. This has happened before with food and liquids, but not as bad as last night. He just would NOT open his mouth to show me if there was water in it. I didn't think there was water in his mouth, but something just wouldn't let me give up on it. I kept praying to God to not let Vince choke if there was water in his mouth, but I was unable to just give it up to God - I was getting more and more frantic, until I was screaming and getting so angry at the FXTAS because Vince would not open his mouth. I was trying to squeeze his mouth open, but he would NOT open it. It's the stupid things that upset me the most - it's not like I was asking Vince to do cartwheels - I just needed him to open his mouth and he would not. It looked like he was being stubborn, even though I'm sure somehow the FXTAS wasn't allowing him to open his mouth.

Finally I had a picture in my mind of what they do with people they fish out of the ocean and save from drowning - they put them on their side. So I rolled Vince on his side and kept coaxing him to open his mouth - FINALLY he let the water out - he DID have water in there and held it in for so long! He had quite a bit of water in his mouth. Once it came out, he was able to talk and open his mouth. SCARY!!! God did take care of him.

Of course I hated myself for having yelled at Vince, and told him I was sorry and that I was angry at the illness, not him - like always. I was feeling miserable about myself and my ability to take care of Vince and praying and praying to God for answers.

This morning I was anxious when I woke up about going through another FXTAS day. When I started reading my morning prayers, though, I was blown away and much relieved at what God said to me in those prayers. Catholics have a prayer book called the Magnificat - it has prayers for morning, Mass, evening and nighttime for every day - each day has it's own prayers, so they are always different. The very first line this morning said "All who are thirsty, come to the living waters!" I just laughed and said "Lord, you really do have a sense of humor!" The whole theme of the morning prayers was water - the waters of life, thirsting for Jesus, etc. etc. What a perfect message for me after last night's water incident.

Then there was a small commentary in the prayers which said, "no matter what force of abuse is unleashed on us, we stand firm; we do not collapse. The authority of Christ upholds us." This reinforced my courage to continue my battle with FXTAS for another day. Only it should not be a "battle"; I need to just let God work through me and trust Him rather than getting so upset like I do sometimes. I know I'm just being human, but God can give me the grace to go beyond what I can humanly do alone. I need that supernatural grace in this situation because it IS truly more than I can handle. But I have no better alternative than the way I am managing our life now, so I must continue to build my faith, because God really has been faithful to me all along, and I have to believe He always will be.

These lessons to me through God's word in prayers and in the Bible happen a lot to me - that's a lot of how I know God is real and is with me. These prayers relaxed me and helped me feel safe in God's care. Every day I also read a commentary on the daily Gospel reading in a booklet called "One Bread, One Body." Today's message was called "Sitting Tight" and explained how sometimes we just need to wait patiently for God, and sometimes we need to take action. That was a lesson I needed to hear after last night's "water" incident: It was right for me to get the water out of Vince's mouth, but I should have done it with more patience and trust in God's guidance rather than getting so distraught. Isaiah said "By waiting and by calm you shall be saved, in quiet and in trust your strength lies."

I also learned a more practical lesson: I went out today and bought an adjustable bed, so I will be able to raise up Vince's upper body to give him water in bed, and feed him meals for when he has bad days and can't get out of bed. Oh I hope it helps!!