to die is gain


Posted on September 19th, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

Over a year ago, James pulled his breathing tube out after an operation and turned purple as he struggled to breathe while still partially sedated. I remember anxiously calling to him through the walls of his glass box, as the respiratory therapists blew oxygen over him: “Love life, buddy! Come on, James, love life!

He really did, while he lived. He loved people, and the outdoors, and eating, and baths, and a nice long nap. He loved games and being tossed in the air and smiles and laughter. He loved it all, except the painful parts, and there were a lot of those.

While we were at the beach, I re-read my prayer journal, which I started the day James got his pump and kept sporadically until May. I cried with gratitude to see how many prayers God had answered. He gave me wisdom to adjust James’s pump well. He helped John and me work as a team. James was able to sit, stand, and took a step—almost walking. I even prayed for his ability to know and learn about God, which was fulfilled in an instant.

I remember in the NICU that I prayed that James would know me as his own mother, apart from all the nurses, and I prayed he would someday smile at me or regard me in a special way. Oh, did God honor those prayers! Eventually, James was known for his frequent smiles, and his special closeness with me was manifested in many precious ways.

God really heard my prayers! In some ways it seems like God allowed James to stay with us just long enough to cover a little bit of each one of them. Here is another video of James standing a couple days before he died.

We didn’t know his future, and we would not have wanted to, as I first realized back in the post called “odds.” God closed his book, and He did write a good ending! Although we didn’t want him to go, heaven is gain for James in every possible way. He loved his life, and his life bore much fruit. God took the tiny, weak seed of our faith and grew a towering tree of testimony to His power and love. What more could I ask? I know he is loving his new life even more, and I know I will be with him again.

I listened to a really good John Piper message that talks about the glorious transformation of the disabled, like James, when they die. He also explains why physical horrors like cancer, deformities, hurricanes, and other kinds of tragedies exist, if you have ever wondered (as I hope everyone has). If you want to listen to it, it’s called “The Echo and the Insufficiency of Hell,” but it’s more about heaven. There is one confusing phrase that he uses a lot, taken from the pastor who spoke before him at the conference, which is “the scream of the Damned.” By that he means Jesus’ suffering on the cross when all our sins were put on Him.

Since I have known the pain of being both barren and bereaved, I have taken Isaiah 49:21-22 (which is a metaphor referring to Israel or the church) as a gift of reassurance that God will return our children to us.

Then you will say in your heart,
“Who bore me these?
I was bereaved and barren;
I was exiled and rejected.
Who brought these up?
I was left all alone,
but these—where have they come from?”
This is what the Sovereign LORD says:
“See, I will beckon to the Gentiles,
I will lift up my banner to the peoples;
they will bring your sons in their arms
and carry your daughters on their shoulders.”

And if our reunion isn’t quite like I picture it, I know that it will be even better, because verse 23 says, “Then you will know that I am the LORD; those who hope in Me will not be disappointed.”

500 days and counting


Posted on September 7th, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

“As you read this, I hope you will understand that when I speak of the long night that preceded these days of my happiness, I do not remember grief and loneliness so much as I do peace and comfort—grief, but never without comfort; loneliness, but never without peace. Almost never.” (from Gilead by Marilynne Robinson)

It’s still not safe for me to wear mascara, but since the day of the funeral, I have mostly felt peace, and even joy. My chief comfort, along with my happy memories of James and our photos and videos, has been to reflect on the fact that James is with God now. Pastor John Piper wrote a brief but very good explanation of why Christians can be confident that God will have mercy on infants, little children, and the severely mentally disabled and give them the same eternal privileges of those who have faith in Christ. How I cling to this!

While our family vacationed at the beach, I skimmed through Isaiah to attempt to answer the question, “How is James changed, either now or eventually, in heaven?” Here are some of the things I found.

  • He will turn his needles, pump, and hearing aid into spoons and toys (that’s my guess at James’s equivalent of plowshares and pruning hooks) (Isaiah 2:4)
  • He can safely explore vipers’ nests and anything else he is curious about because the dangerous things of earth will be redeemed so they no longer harm or destroy (11:8-9)
  • He will feast on rich food (25: 6)
  • His death-shroud will be destroyed and the Sovereign Lord will wipe away his tears (25:7-8)
  • He will walk on a smooth, level path (26:7)
  • His heart’s desire will be God’s name and reknown (26:8)
  • He will live; his body will rise; he will wake up and shout for joy (26:19)
  • His eyes will see the King in His beauty (33:17)
  • He will not say, “I am ill,” and his sins will be forgiven (33:24)
  • His deaf ears will be unstopped (35:5)
  • His motor problems will disappear; he will leap like a deer (35:6)
  • His language impairments will disappear; he will shout and sing for joy (12:5-6, 35:6)
  • He will experience everlasting joy and gladness, and no more sorrow and sighing (35:10, 51:11)
  • He will be gathered into God’s arms and carried close to His heart (40:11)
  • He will drink all the free water he needs (41:17-18)
  • He will be taught by the Lord, and know great peace (54:13)

These are all fuel for my heart and imagination as I try to picture James having a good time laughing and snuggling with Jesus. When I feel the pain of his absence, these things make it easier to believe that God did “work all things together for good” in James’s life and death.

Today, September 7, is a big day on our refrigerator calendar, the only day with James-related notations that have not been crossed out by now. It is Grandparents Day. It is also the anniversary of his homecoming from the NICU. If that were not enough, he would have turned 500 days old today. We had thought we would have a party with our little man, but instead we sent all the GPs an envelope of James’s last photos.

when my heart condemns me


Posted on September 4th, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

Today would have been James’s swallow study at the hospital. I have the detailed instructions for it marked through on my calendar, leaving no space to write anything new on today’s date. (That’s a good metaphor for my time right now–recently very full, and presently very empty.) The swallow study was supposed to give us a better understanding of what was making James choke on certain foods and thin liquids. I regret not spending more time trying to feed him by mouth, but we were waiting for the results of the study. He did enjoy eating, though. I wish I had tried to fit in more spoon-feedings simply because he liked it, at least until the coughing or retching began.

I regret a lot of things, looking back, and although everyone tries to talk me out of it, I feel a pretty sizable sense of guilt about James’s death. He was my responsibility. I was on duty. What if it was not his neurological problems that killed him, but something I did wrong? Maybe I should not have let him sleep on his tummy after he came home from the hospital (and was off all the monitors). The cloth diaper he was lying on might have kept him from breathing (although he was able to turn his head). His sugars were good…I had been giving him free water at night, but water should not cause any problems…I go through the list over and over in my mind.

I have confessed these things to God and begged His and James’s forgiveness. So when the guilt-tape starts playing again, I go to 1 John 3:16-20.

This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth. This then is how we know that we belong to the truth, and how we set our hearts at rest in his presence whenever our hearts condemn us. For God is greater than our hearts, and he knows everything.

God knows that I really did try to lay my life down for James and love him with actions and in truth, although I was not perfect in faith, diligence, or courage. Christ enabled me to do what I did do, partly by setting me the example of love through His literal sacrifice. Hebrews 10:14-23 confirms that Jesus’ sacrifice was sufficient to secure our complete forgiveness for sin, and not only that, but also to cleanse us from a guilty conscience. That is the source of the hope we profess. And that is what I tell my guilty heart, as many times as it needs to hear it. God forgives me through Jesus, and Jesus has also cleansed me from a guilty conscience. God does work creatively and redemptively, even through my mistakes and bad decisions. 

I like to think that James has forgiven me, too, if he needed to at all. I never knew him to hold a grudge when I had to hurt him in life, at least not for long. He seemed to understand that it was all meant for his good, and he would put it behind him pretty quickly (after an angry shout sometimes).

I will write soon about the divine comfort and joy God has given me since James died, but I wanted to share these thoughts first. I suspect that there’s a lot of guilt out there amongst parents, especially “special needs” parents (and medical professionals), who are responsible for life-and-death decisions and interventions day after day. I just wanted to share the verses that help me avoid the temptation to listen to my heart and despair.

It’s been a day without you, and already I fear I will forget


Posted on September 1st, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

the angry growling sound, silent arch, and shout of frustration
how you hated to be left alone
making you smile was my first trick of the day
“Good morning James, how are you? I hope you’re feeling fine!
Good morning, James, how are you? We love you all the time.”

blood sugar checks took only ten seconds
sugar check, carb bolus, venting, water or juice, enzymes, formula
all the empty containers on your tray
the wary pause until your stomach heaved
and your brave eyes asked me to vent it all back out

pushing on your tummy to get out the “bad guys”
smiling at you, talking and singing
“Old MacDonald” and “Itsy Bitsy Spider” were your favorites
entertainment would distract you from the pain
every couple hours we’d do it all again

the sweet heft of your little body as I carried you to the bathroom
your smile of delight as you realized it was bathtime
craning your neck to peer back into the mirror,
you wanted to beam at me more than look at yourself
kissing your tummy and its scars
your pleasure at having your hair washed
your curiosity about the faucet

checking your blood sugar a dozen times a day
tiny enzyme beads that clumped up in the tube
the gas medicines that never worked
sticky medications and refrigerated shots
searching the internet for answers I couldn’t find for you
wishing you had one doctor who understood it all

giving a shot and looking up to see a grin
you were waiting for the kisses—your reward at the end
your excitement when I rubbed lotion on
your soft warm skin and chubby thighs
letting you wear the outfit you looked at most
racing to get you ready for therapy

watching you melt the heart of every therapist
you loved it when they put anything in your mouth
brushing you, stretching you, “up, up, up to the sky we go!”
rolling on the ball, coming up for a kiss from Mommy
how quickly you understood a task, and how hard you worked to do it
you so wanted to pull your train and make the monkey say “boing”

the sweet sounds you made for talking
“aaaah” and “mmm” at first, later “yeah,” “up,” and “go!”
how proud you were to get them out
I never needed to teach you “no”

the outdoor walks you took with Grandpa, like riding on your elephant
the chats you had with Grandma, catching her up on all she’d missed
Grandmommy loved to read you books and feed you solid food
Nana kept you healthy and sang to you about Jesus
Grandpa Bill took such delight in your progress

watching you play with your toys in your highchair
shiny beads, the bag of beans, tissue paper, or a spoon
your rapt interest in every drink we took
your pleased laughter when you ate a cracker the first time
pumpkin pie, ice cream, green beans, sweet potatoes
anything got a wrinkly face, then diligent compliance

squinting into the sun as we went to the grocery store
how quiet you were on trips, always observant and friendly
examining strangers closely, then slowly smiling
“look at those eyelashes!” they would always say

Daddy holding you in church, his most prized possession
anti-gravity play was his specialty
you liked the worship music but laughed during the prayers
and you knew how to work the adoring church crowd
meanwhile I watched younger children surpass you
felt jealousy, then guilt and a renewed, protective love

feeding you “on the road” was so difficult
laying out the syringes, bottles, and meds
you were too big to lie down on my lap anymore
worrying what people thought as I pressed on your tummy
watching other moms pull out a bottle, shake it up, and that was it

comforting your terror after a fainting spell or bad dream
“It’s ok, Jamesey, Mommy is here! Mommy’s got you”
patting your behind to get you back to sleep
watching a laugh shake you in your dreams

waltzing in the kitchen with you looking up and giggling
trying to cut your hair with you searching for my face
you’d look back and forth between us, waiting to bestow a sunny smile
laughing with us until the hiccups started
your concern when voices seemed upset

working hard for Mommy’s praise in the mornings
learning to stand, trying to walk, a couple days before you died
we expected you to surpass all expectations
believing God would never waste a single hurt that you endured
I was so proud of you, and so thankful

holding you in the rocking chair late at night
working hard to get the poops out
your crying subsided to contentment in my arms
your warm head tucked under my chin
your nibbles and kisses on my neck

I held you a few more seconds that last night—
still, why was I so eager to put you back down?

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