From James:

So Young’s doctor predicted a couple of months ago that, barring a miracle, she would “slowly shut down.” Most recently, she seems to be getting weaker physically, and she is having more incidents of choking. The short-term memory loss continues to be a problem, along with disorientation and the inability to find words. She was always a great conversationalist, able to speak comfortably with anyone and listen well. Now she hardly talks.

When she does get chatty, however, she asks a lot of questions. She always asks where the girls are and if “Nanna” (my mom) is here. She asks if it is Sunday a lot. (She has no real sense of time anymore.) She also asks bizarre, nonsensical questions. This is different from not knowing the right words. She has some concept in her mind that makes sense to her, most likely because she is imagining something that isn’t real, so she asks about it. “Where are the men that run around?” “Are you going to put up the bales?” On and on almost every time she talks to me. They can actually be pretty elaborate. I play along, because I have learned that if I act like I don’t know what she’s talking about, she gets angry, because of course I should understand. I don’t think that other people encounter this very much, because with them, she mostly answers yes and no questions, stays pleasantly quiet, etc. With me, she is all questions.

The hallucinations continue. She saw a “scary image of a girl” next to her the other day. I told her not to look over there. Yesterday, she saw a bunch of children in the room, little boys. I asked her what they were doing, why they were there, but she didn’t know. I told her they are probably angels. Today she was staring upward as if transfixed. I asked here what she was looking at, expecting an outlandish explanation. “The ceiling,” she said.

Her long-term memory appears to be diminished. This is new within the last couple of weeks. For example, she doesn’t remember my birthday. She can’t reliably remember the names of her daughters, having guessed wrong or been unable to recall them at all the last three times I asked her. That could of course be anomia, so perhaps a better example is when I was playing a couple of songs that have had a lot of meaning for us, especially early in our relationship.

I played Barber’s Adagio for Strings for her. I asked her if she remembered it, and she said yes. I told her that she played it in orchestra in high school. Does she remember what instrument she played in high school? “All of them?” she guessed. She played the violin and was quite good at it. I played our wedding song, Grow Old with Me. I asked if she remembered why the song was important. Does she remember dancing to the song with me? When did we dance to the song? “Valentine’s Day?” Another guess. We danced to that song at our wedding. I encounter examples like these daily.

I don’t often cry about our situation, but I wept while the songs played. Something about listening to a song that so beautifully walks between joy and sorrow like Adagio or that is so ironically hopeful like Grow Old, contemplating memories of the days when she was whole, and looking at her lying there diminished by disease, caused me to feel the depth of what we have already lost. It is these juxtapositions that hurt the most, like when Shannon came upstairs crying yesterday because she had heard an old voicemail on her cell phone, “from when Mommy could talk.” I listened to it, and it made me cry, too.

So Young in June

My Beautiful Wife About Seven Months Ago

I want to thank everyone again for all of your support of us, emotionally, spiritually, financially, and otherwise. The outpouring has been overwhelming in a good way. Someone recently pointed out that kindness isn’t the right word for it. It is love.


12 Responses

  1. “Piano, piano” we say in Italian (softly, softly …)
    And that is what follows “adagio.” So now it is time to focus on that “piano, piano” James: in the very quiet of these moments, when So Young’s voice no longer makes sense, listen to the real conversation between the two of you. Yes. That unspoken language of love which no manner of illness, confusion, grief or human suffering can erase. So Young and you are bound by the Divine. And when you cannot ‘hear’ that delicate conversation any longer, turn to your two little girls. Together they will play the magnificent symphony of So Young and your lives together: their marvelous song will remain a testimony of your love for one another.

    Piano, piano…

    Pax Christi,

  2. Dear James,
    I am maybe not that old, but I have pretty solid personal + relational experience w/ trouble + suffering that God seemed to lay in front of me + then help me through.

    When secular types (I have been to way too many H.R. Seminars) ask what is my ” life vision statement”, I can’t blurt out that I have experienced true evil as a child, and I am so glad that God is more powerful, loves us, + has a plan that I want to cooperate with + that I am very excited about witnessing God working. No,instead, I have to say, “I am so in love with Beauty, Truth, and Justice (Jesus) that I am committed to spending the rest of my life to pursuing making them abound..

    We humans are so easily confused, so we suspect that we ought to blame God whenever we have pain or sorrow. Satan orchestrates it all, first the hurt, then shaking our faith, saying God has inflicted evil.. God does not seem in a hurry to defend his Honor, but He teaches us phenomenal, amazing, amazing things, like He did withJob if we refuse to put our trust in any “”god” or force other than Him. Have you seen this radical invitation from God?: “Call unto ME + I Will ANSWER YOU, and show you great and mighty things that you know not.” (Jeremiah 33:3)

    I feel so compelled: I so want to have that kind of relationship + be the recipient of the fulfillment of those kinds of promises.

    In my teens I took opportunities to sit @ the feet of great believers, weathered by harsh, even impossible lives: I met African Americans, who remembered slavery, “Reconstruction”, segregation, Jim Crow, raping + lynching of friends by “Americans” who wanted to destroy them and their children.

    Here are some heart-felt “bon mots”from those seasoned saints:
    “No matter what, You have to remind yourself: the Worst is behind us, because that was Jesus’ crucifixion. And the best IS ahead of us: that’s when He takes over everything, and sorrow + sickness will be no more + we will shine in His Kingdom of Heaven.”

    Another elderly black pastor basically told me to not be so serious about my own seemingly end-of-the-world trials + tribulations: “You CAN’T have a testimony without a test!

    When grieving things things that are out of your control, it is necessary to dig into Ecclesiastes + remember that your children are looking to you in hope that your connectedness w/ the God that holds So Young and you in his hand will be sufficient day by day.

    I could cite the devastations our family has weathered by God’s Divine presence and fiat, I suppose: all pretty devastating. And now is not the time to spill the beans.

    But I, like So Young, feel compelled to report the little men under the bed + swat @ the butterflies when I get a fever or a dr. Is careless in prescribing meds it is called delirium.

    Would you consider putting up a big calendar + taking turns putting up a big gold star every morning that So Young stays yet a while longer with you, the heart of her heart?. I am thinking of a morning ceremony, like te taising of the American flag @ school: the star gets affixed, praise to God is offered out loud while everyone holds each others’ hands. Then everybody gives + gets a kiss from everybody.

    Keep the faith.

    We are ever with you all in prayer,

  3. Thank you for sharing. The love and the hurt thunders from between the lines. Know that our thoughts and our prayers continue to be with all of you.

  4. I remember that song Grow Old with Me at your wedding. My heart sank and a heavy sadness came over me while reading this… in some ways this is a story/journey of a long good bye. My prayers love are sent to you from Cali.

  5. Dear James,
    What a lovely potrait of So Young @ the beach, dressed I’m bright colors, with a face that says so much about trust, feeling secure, accepted + very loved.

    I am very convinced that just as God stores up all of each one’s tears in a bottle w/ that person’s name on it (Ps. 56:8) so that they all are attended to in His own sovreign way (“My thoughts are not your thoughts, nor are my ways”, declares the Lord. Isaiah 55:8), and since Jesus blatantly remarked that God is habitually mindful of every minor detail about us (Luke 12:7), that every split second of our lives, good + bad, though muffled by memory or distorted by tricks of the human psyche, is preserved intact in some sort of continuous loop that we may have to sit down + watch w/ our Creator on Judgment Day. It might even be on a Super Bowl sized projection screen for everyone else to finally get a whole look @: (Matt.10:26, Mark 4:22).

    But what I am trying to tell you is that the beauty and the genuineness of the moments that can not be reproduced now are small inklings of Heaven, yet Heaven also keeps (only God knows why) preserved perfectly all that has gone on. “A thousand ages in Thy sight aslike an evening gone…” (Psalm 90)

    We are bound by experiencing time going in only one direction. God is the Alpha + Omega, seeing + acting in all moments of time simultaneously. He can know the end of the story from the beginning + all the details in between, yet still be fair + have flexibility for whole adjustments whenever someome gives up everthing to become a devoted lover + servant of Him. .
    Loving Him + you all,


  6. James, I continue to keep you all in my heart and prayers. Thanks for sharing your love, pain and sorrow with all of us and of course the beautiful pic of So Young.

  7. Yes, James, the right word is love and it is beautiful to witness.

  8. James, your love reaches into my heart and I then lift it up to our compassionate God on your behalf.

  9. James, I can only add that you and your family continue to be in my prayers.

  10. James, remember Hebrews 11:1 in this time. ALICE (All Love in Christ Eternal)

  11. James, just wanted to leave a note… praying for So Young, for you, for your family. If you ever need to talk, hit me on twitter, leave a DM. I’m just a phone call away my man.

  12. James, we just saw the update and I read it to Grandpa Gage. You are in our prayers. Remembering that God is already in our tomorrows and His love for you will get you through the hardest of times. Lean on Him and His angels that are there helping you everyday. You are doing awesome and a wonderful example of love to SoYoung and your daughters.

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