Downstairs Again!

From James:

What is wrong with this picture?

So Young Downstairs

If you guessed, “So Young would never wear a Santa hat unless James tricked her into it,” you are correct!

What is right about this picture, on the other hand, is that So Young is wearing the hat downstairs, something that she hasn’t been able to do without extreme difficulty until today.

We finally got the stair chair — or more properly “stair lift” — installed today. This eliminates a mountain that stood between So Young and the rest of the world as her mobility has declined. We would often consider going someplace only to have the trip fail the “worth it” test, such as, “Is it worth it to climb down the stairs and (later) back up just to go out for a cup of coffee?”

This is definitely good news for us, brought to you by my grandfather, who lovingly paid for the very expensive piece of equipment, and my dad, who lovingly did all of the legwork to select it and have it installed. Tom of O’Neill Stairlifts is the guy who dutifully did a great job and planning for, ordering, and installing it. Some of you won’t need his services for a couple more decades, but when you do…

Here are a couple more pictures of the stair lift and So Young descending it for the first time today. She was downstairs for about an hour before falling asleep while eating dinner.

This is the sleek-looking track. It looks a lot like the brochure, which also featured sexy old people.

Stair Lift Track

This is So Young on the chair lift.

So Young on Lift

Another great thing that happened recently was So Young’s old small group coming to carol at our house on Saturday. They also brought presents and food. This is what I mean by living out Christ’s words, “I was in prison, and you visited me.” Being sick can be like a prison. You are literally confined to one place against your will, albeit not as punishment. So her small group came to us rather than us coming to them. They didn’t even demand that So Young be carried downstairs. They sang in our room. We could have carried her down, I suppose, but them coming to us was so much more like what Christ does. To me they sounded like angels.

So Young's Small Group Caroling

On the “how is So Young doing” front, things are not good at all. This is the worst I have seen her in the past two years. In the last blog post, I mentioned that her speaking was worse and that she was disoriented more often. She is more so now, I daresay much more so. I have written about her occasional anomia — getting words wrong or not being able to remember words. Now this is frequent, but it is combined with a general inability to reason and disorientation about current circumstances. There are many examples of this, some humorous but all part of a negative trend.

For example, on Friday Jin was pouring her heart out to So Young, talking in sadness about deep things, since they are like sisters. So Young seemed like she wanted to say something, so Jin asked her what she had to say. So Young said, “Is there any chocolate?”

Yesterday I told her she is getting a chair lift, which we have been talking about for a couple of months. Knowing her mental state, I asked her if she knows what a chair lift is. She said no. I asked her if she could guess. She said, “I think it’s a game people play.”

Today she asked me when the men wearing orange are bringing the fishes. Later she asked when someone is “bringing the puppies up.”

Will Shannon have to go skydiving?

Somebody asked her today where she is going to go when she gets the chair lift. She said, “Europe.” (I’ll grant you that that might have been an actual joke.)

Those are selected examples, but they happen pretty much every time you talk to her, and it is getting worse rather than better.

She is also incredibly difficult to understand when she talks.

Meanwhile, her extreme tiredness has not gotten better. She is on a strong dose of steroids that would normally make her wide awake and amped up, like a lot of caffeine. She was hyper like that two years ago when she was on the same dose of steroids. Not so now.

I am observing a trend where she continues to be too tired to eat full meals. She isn’t in danger of malnutrition, but it is happening. This is new.

She is choking more. Difficulty swallowing is a well-known side effect of brain tumors, and she is experiencing it with increasing frequency. I’ll switch foods for her, trying to find something less choke-inducing, only to find her choking on it as well. I don’t think that she is at the point that she needs a liquid-only diet or something, but this is happening as well.

With all of this happening, I felt strongly convicted on Friday that I should take time off as I had planned, no longer working from home. This enables me to focus on So Young and spend time with her. My current plan is two weeks, although I could see this being longer or shorter.

I’m not saying I have given up on So Young or that I don’t believe that God can heal her, because I do. I am telling you what is happening. It is a dark time. Am I going to pretend it is something else?

I have started reading scripture aloud to So Young in the morning, especially the Psalms. So much of it resonates now that seemed obscure before, about rescue, God’s love and power, and gratitude in spite of everything.

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12 Responses

  1. Sorry to hear all this. There is nothing I can say but that I do keep you all in my prayers and thoughts. Take care.

  2. Thank the Lord for each day we have with our loved ones. It is a dark time, but do not lose hope, brother. God is the answerer of prayer and does not tire of our constant prayer.

  3. You all are in my thoughts and prayers. Love the chair lift and the opportunities it is affording So Young!

  4. As always in my prayers and thoughts. Your grandfather is a wonderful man to help in such away (and of course your parents are awesome :o)
    Debby

  5. My thoughts and prayers are with you all. I was so happy to meet So Young yesterday! Blessings to your family and friends for all they do.

  6. I am saddened to hear the recent news. “It is a dark time”, indeed. We can only pray that things turn out for the best. My thoughts and prayers are with you all.

  7. You are not alone! We continue to pray for you as you face this seemingly unbearable challenge. May you continue to be Hs light for So Young and your children.

  8. Thank you, James, for keeping us up-to-date with all the news, light and dark. We continue to pray for you.

  9. Awesome performance Shannon! The message was powerful. It was also wonderful to see So Young in the service yesterday. God bless. We are praying

  10. James, thanks for being real. For not sugar coating it. The Guerreros are praying. I imagine the following is hardly of any value, but it’s the truth. Through your writing I have become a better husband seeing how you have loved your wife since I have started reading this blog. You are a great man because of how you have let God use you. Regardless of outcome God has most definitely been glorified.

    I can’t begin to imagine the pain, and as I try I am having a hard time stopping the flow of tears. It is quite evident that God has spiritually reinforced you. Thank you for staying faithful to Him.

    What a great blessing it is for me personally to see you live like Christ is coming back.

    I am praying for So Young specifically and praising God that he gave her such a transparent and faithful man. Merry Christmas James.

    Sincerely,
    Your little brother

    • Hey, Victor!

      Thanks for reading the blog and taking time to reply. Merry Christmas to you! Your note has been a great encouragement to me today.

      God bless,

      James

  11. My heart goes out to you, your parents and the girls for the courageous way you’ve cared for So Young. Will continue to pray for God to keep you strong..and mend your heart.

    Alvin

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