I think most of the intense feelings we needed to express about James have run their course now. It’s time to integrate our ongoing memories and thoughts about him into the rest of our lives, so instead of continuing to add to this blog at sweetbabyjames.info, we’ll bring things to a close here and write about him at our current blog, houseofgjertsen.info. The site will stay up, and we’ll still enjoy reading and posting your comments if you wish to leave one.

Sweetbabyjames.info, with its 1,200 comments, still getting a thousand hits a day almost a year after James’s death, has changed our lives forever. Not only were we better able to track, communicate, and celebrate James’s growth by recording the details of his life online; not only did we see God shape our attitudes towards disability and suffering and doubt through our writing; but we also have been witnesses of how personally God speaks to people—even complete strangers!—through the life of our beautiful, broken little man.

We loved him, but we didn’t realize so many others would, too. It’s impossible to understand how our story could be that special, except God must be at work through the lives of the weak. It has been a humbling, exhilarating, mysterious thing to witness. The continual stream of readers and comments has challenged me to share our story with a larger audience for the glory of God. Thanks for journeying with us and for loving James, and Dora, and us, extravagantly–even though many of you knew the cost before you started.

OK, one more of Mister Cute for the road…see you soon at the House of Gjertsen.

Last year we planned a big party for James’s first birthday, with an amazing cake and many friends and family. In fact, we wrote about his awesome birthday cake today on Cake Wrecks, our friend Jen’s blog. In hindsight I’m so thankful we had a big cake, so glad we got his picture professionally done, so glad we tried to celebrate his accomplishments without dwelling too much on his disabilities.

This year I couldn’t resist buying James a “2″ candle, a small echo of his last birthday. I doubt they need birthdays in heaven, but it still feels right to celebrate his here. If James were still on earth, I wonder what he would be doing now. Would he be walking? sitting? eating? feeding himself? turning more pages in his books? Using more words? Would he have entered the terrible twos in an angry quest for independence that he would never attain? Would he have seen the beach, the forest, the mountains?

Last week I was looking for a videotape to record over, and I pulled an unlabeled one out of the bottom of the camera bag. I popped it in and was surprised to find a long recording of the underside of the kitchen sink. (At first I thought it was the bathtub plumbing, but that must have been a different tape.) At the time we had a slow leak that John was trying to find the source of, so he set up the camera to record the drips. I was about to rewind it to record over it when I saw the date was Dec. 31, 2007. I thought, James was home then. I wonder… I hit play, turned up the volume, and sure enough, I could hear my father singing to James in the background and James’s characteristic snort and coo. He never appears on the tape, but his precious sounds were such a gift to me this week.

Today we celebrate anew the joy we had in him, and how God used the weak to teach the strong. James is no longer ours, but he’s also no longer broken. He’s eternal and even more beautiful than he was in life.

Happy Birthday, Mister Cute. Mommy and Daddy love you, and we miss you.

Every three or four hours James is reborn in the digital photo frame on my kitchen counter. He starts off hideously thin, huddled in his glass box, and slowly gains weight, begins smiling, comes home from the NICU, puts up with wearing various costumes, celebrates precious milestones, and grows into a little boy in our arms. All the last pictures are happy, but we are sad when we see them, knowing that soon he will be whisked back to the Winnie Palmer operating room to start again. From his first gasp to last days, we never tire of looking at and talking about the gift of his life.

On April 1st I was thinking about James and wondering what we were doing this day last year. It dawned on me that April 1st was when he got his hearing aid, and the memory of our anticipation, and his wondering reaction, came back in a welcome rush. The sound of raindrops outside reminded me of another time when Mom and I were taking James for a walk in the Baby Bjorn and it started raining. Trying to protect James from the rain, we jogged back to the house, but he giggled at all the bouncing he was getting and seemed unperturbed by the drops on his upturned face.

One memory that haunts me from time to time is the one from what we call “that morning”—holding James’s lifeless body in my arms for the last time at the hospital. I can remember a lot of details from that moment, and it is still freshly painful whenever it comes to mind. I don’t know why I think of it, or whether it sent by Satan as an attempt to discourage me, but there are two things I try to do to cope with it. First, I remind myself that at that moment the real, beautiful, eternal James was in heaven with the Savior, experiencing fullness of joy in His arms. I try to picture that instead. Second, I ask God to replace that sad memory with a happy one from James’s life.

Meditating on the meaning of Good Friday and Easter, I don’t think the cross has ever meant more to me than it does now. God’s sacrifice of His only Son, the Son’s suffering to accomplish peace with God and eternal life for those who believe (and those, like James and Dora, who are unable to make a choice due to extreme youth or incapacity)…it is inexpressibly sweet to my soul. We love to watch James’s life continually renewed on his photo frame, but his real rebirth is far more glorious, joyful, and fulfilling than we can imagine.

“But because of His great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with Him in the heavenly realms in Christ Jesus, in order that in the coming ages He might show the incomparable riches of His grace, expressed in His kindness to us in Christ Jesus.” Ephesians 2:4-7

This isn’t necessarily the last post; we’ll continue to write here anything that has to do with James and/or Dora. But as we’ve adjusted to a “new normal,” we’ve been working on a setting up a new place to write down some of our thoughts.

So for most of our future writing, you are invited to visit the House of Gjertsen.

April 2007 – it seems like a lifetime ago.

For Christmas, I got Abby a digital photo frame, so now, on our kitchen bar, we can see a new picture of James every 15 seconds or so. We leave it on all day. After cutting out the blurry shots and the shots which weren’t that great, we have a little over 1000. Not bad for 482 days. So frequently we’ll be washing dishes or preparing a meal and see some picture of our son that just makes us smile, laugh, and or sometimes cry. In some ways it’s like he’s still with us, but without the constant glucose monitoring and tube feeding. Well, without a lot of things.

I think I mentioned before that an earlier post of mine was going to be published in a book. Well, Letters from the Waiting Room is out, and it’s a compilation of various sorts of letters or journal entries that all in some way or another deal with times of life that demonstrate the depth of the human experience. Anyway, my letter to Future John is on page 21.

As far as how “future John” and “future Abby” are doing, we’re contemplating starting a new blog. It feels very sad to leave this one, and we may continue to post here if topically it has something to do with James. But there’s going to be other stories to tell which don’t seem like they belong on sweetbabyjames.info. Abby and I are trying to read about 10-20 comments each Sunday morning. Of course, we read them as they came in, but with the volume we received shortly after James died (especially from all our new Cake Wrecks friends!) we just felt we needed to revisit them. It’s pretty powerful, and hard to get through more than about 10 or 20 in one sitting.

Sometimes we wonder if our lives will touch as many people as James’s did.

One of the reasons we tried for a baby so soon after James was because we knew he might not live long, and we thought another child would help us cope with his loss. Oh well, I guess you can’t really plan these things. The whole grieving process for James would have looked and felt much different if I were still pregnant. I would have tried to suppress some of my sadness so I didn’t affect the baby. Of course there would be less to cry about anyway if she were still here, and it would take less faith to have hope.

One of our readers with a blog for a miscarriage ministry asked us a while ago whether we were able to grieve the loss of Dora or whether it had been overshadowed by the loss of James. John and I talked about this question quite a lot. I think that for both of us, losing Dora was harder than losing James because of the total shock, the spiritual confusion of so devastating a loss after her miraculous conception, and because we never got to meet her. It was also more difficult because we lost her first. The art of losing takes some time to master.

I do think grieving for Dora prepared us in many ways to grieve for James. I had already gotten used to the idea that I had a baby in heaven, and I had time to process my feelings and understanding of God’s greater purposes and continuing care for us. But after James died, my grief for Dora was pretty much absorbed into my grief for James. I think of James much more often because of my memories of his constant needy presence. I imagined Dora as an addition to our family of three, a companion and helper for us and for James. Without James the context I pictured her in is gone. I guess they are together now after all.

Sometimes I think of how proud parents are when their children perform in a Christmas choir. I try to imagine that’s how we’ll feel when we get to see her sing in heaven. I assume her life there will be spent in worship.

We set aside some time to honor Dora on November 22 at the Remembrance Ceremony for babies lost at Winnie Palmer Hospital. Parents read poems and sang songs they or others had written. There were a lot of tears. The social workers read the names of each of the babies represented–I was surprised how many had names–and some families lost three. They offered to honor James, but we declined because he had already had a memorial service. This day was for Dora.

When we heard them announce, “Elvis Aaron Lee,” we realized that we knew someone there. Elvis was a former roommate of James in the NICU, and we lived in the RMH with his parents, Chad and Natasha, until Elvis died at less than a month old. We talked to them after the ceremony and told them about James and Dora, and they shed some tears with us. Both Chad and Natasha got elaborate tattoos of little Elvis, done from a photograph, with baby blocks underneath spelling out his name. It was a comfort to know that we weren’t the only ones whose lives are marked by the loss of a tiny one.

Throughout the service, and the butterfly release afterward (which was postponed until a warmer day), familiar phrases of comfort were spoken about how our children live forever in our hearts, or in our memories, or as a sort of consciousness in nature like the wind. I thought how much more exciting is the truth: they are more alive than they ever were on earth, joyfully, completely, abundantly—whether we remember them or not—forever.

The day before I went back to work, John and I spent time at James’s site for the first time together since we chose it the day after he died. On that day the tropical storm had refreshed the lakes and created new pools all over the cemetery, and I had cried so much my contacts had clouded over and I could barely see. This day was sunny and cool, and the tears still came, but they aren’t the continual stream they used to be. I think my vision has cleared, too, and not just my eyesight.

We snapped off the pansy seed pods, brushed the dirt off his photo, and talked to him a little while. John remembered his beautiful smile and his ready laugh of “Hmmm!” Lizards stalked stiffly along the shady crevices of the marble slabs. I thought how James would have enjoyed them.

Recently I read that one of James’s HPE blog-buddies turned five this month. Hopefully everyone reading this can appreciate what a milestone that is! Ryland has the same degree of HPE that James had, severe semilobar, with a new problem of possible seizures. Ryland’s mom described her idea of a wonderful day, and I could completely identify: seeing him smile, not being in the hospital, watching him learn something new, or hearing a doctor’s good report.

That was my life, too. It felt so limited at the time, but there was a heightened joy and hope and thankfulness that was the flip side of the sadness and pain of disability. I miss that life. That complicated, exhausting, intense, but beautiful life of singleminded service.

I don’t want to move on, but I have to.

There seems to be less to say these days, for the same reason our camera seems to have less pictures on it. We still remember things vividly, especially as annual events cycle past (our big church picnic, Halloween, a friend’s daughter’s birthday party) and we reflect on how things were so different a year ago. The memories are fresh, but a lot of the zest is missing from the present. We go through the motions of our former lives, but without James or Dora, things feel more subdued.

In truth, it isn’t because we have nothing more to say that we haven’t been updating the blog very recently. Abby is trying to write a book about our children and some of the things we’ve learned. We don’t know a thing about finding a publisher or anything like that, but God has clearly indicated that she’s supposed to be doing this, and we believe that the rest will follow. One of the most recent confirmations is a check we received in the mail on Friday. It was our payment for allowing one of my early blog posts to be published in a compilation volume. We’ll put up a link when the book is in print.

On October 27, all of James’s grandparents came down for a special time of remembering James at his graveside inurnment service. Although it is just a physical place, and not really where James is right now, James has a little blue box inside a niche in a shady section called the Garden of Reflections at All Faiths Memorial Park a few miles from our home. Something about seeing the caulk applied to the niche to seal it shut before the marble wall was bolted on was difficult for me; I can’t explain why. It was so final. I know he’s not in there, but it seemed so sad nonetheless.

Abby’s dad planted some pansies in a planter which we were able to put in front of the niche – white to represent the innocence of an infant, and blue to represent a heavenly home we believe he is resting in. Adorning the planter are a plastic bee to stand for one his first toy friend, a plastic truck to stand for one of his later toy friends, a little jack-o-lantern to remind us of how photogenic he was this time last year. Also we placed a little picture of James, because it seemed incomplete without a smile.

I wish I could remember all the things the grandparents shared about James. I know they talked about how engaging he was, how courageous, and how attentive. How his sweet character and focus on others was so unusual for a child. They shared some favorite memories, and we all cried because we missed him so much. When there was no more to say, we read these scriptures and tried to focus on the hope of eternal life, the goodness of God, and his love for those like James:

Then little children were brought to Jesus for him to place his hands on them and pray for them. But the disciples rebuked those who brought them. Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”
“See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.” – Matthew 19:13-15, 18:10

 [Jesus said,] “Do not let your hearts be troubled. Trust in God; trust also in me. In my Father’s house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” - John 14:1-3

So will it be with the resurrection of the dead. The body that is sown is perishable, it is raised imperishable; it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; it is sown a natural body, it is raised a spiritual body.  If there is a natural body, there is also a spiritual body. - 1 Corinthians 15:42-44

 “Blessed are the poor in spirit,
      for theirs is the kingdom of heaven.
 Blessed are those who mourn,
      for they will be comforted.
 Blessed are the meek,
      for they will inherit the earth.
 Blessed are those who hunger and thirst for righteousness,
      for they will be filled.
 Blessed are the merciful,
      for they will be shown mercy.
 Blessed are the pure in heart,
      for they will see God.
 Blessed are the peacemakers,
      for they will be called sons of God.
 Blessed are those who are persecuted because of righteousness,
      for theirs is the kingdom of heaven.” - Matthew 5:3-10

See, the Sovereign LORD comes with power, and his arm rules for him. See, his reward is with him, and his recompense accompanies him. He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. - Isaiah 40:10-11

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. - Romans 8:18-21

And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified. What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? – Romans 8:28-32  

The overall theme that we wanted to convey during the service and the lunch we shared afterwards was from John 12, when Jesus tells his disciples, “I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds.”

Not that we mean to compare in any real way the death of our son and the death of the Savior of all mankind, but our hope, just as we’ve hoped ever since we started this blog, is that something about James and our testimony as his parents would be a seed of faith in the gospel of Jesus Christ for anyone who is searching for one. “And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him” (Hebrews 11:6).

Exactly one month after James died, John’s 33-year-old best man, Xiao Li, joined him in heaven. The fact that they are together is a considerable comfort for us as well as Nathan, Xiao’s six-year-old son. I heard him repeat the fact to several people during the week I spent in Houston with the Li family.

It was therapeutic to serve them by cleaning, babysitting Anna (2 yrs), and sorting Xiao’s things. I miss serving James in the intense, exhausting fashion he required, and for a while helping the Lis filled that vacuum. John also came to Houston for a weekend and got to do a Home Depot project with Nathan.

Although her loss is very different from ours, it was good to grieve alongside Michelle. We would talk about James and Xiao after the kids went to bed. The Lis seem to be coping very well, if you were wondering. She says the evenings are the hardest–no Xiao to come home from work, play with the kids, re-energize the end of her day, and talk with her in the quiet night.

Every day I feel the pulls, forward and back. I still cry every day for James, just missing him. I try not to cry for a long time, though. And then I go through periods of a few hours at a time without thinking about him at all, and I remember him with a start. John used to keep thinking he heard him crying in another room. Once I dreamed he was alive and in my arms again (in the dream I accepted this very quickly). Sometimes other people tell me they dream about James and Dora, too.

A big pull forward is the fact that I got a teaching job a couple weeks ago. I will be finishing the year for a teacher going on maternity leave at Lyman HS, teaching 5 classes of English IV (seniors) and 1 class of English II Honors (pre-AP sophomores). I have never taught standard-level senior English before (I usually teach English III and AP), but I think I will enjoy the challenge of a new curriculum. I taught honors sophomores for a year a while ago. I don’t start teaching until around Thanksgiving, which is nice, so I have some time to plan. Lyman is about 20 minutes away, and James’s cemetery is on the route, so I can stop and visit if I want to.

About three weeks after James died, a friend treated me to a whirlwind trip to the New York Met (the art museum). We flew there and back in one day. We attended several different talks and tours, but I noticed myself being drawn to artists’ representations of children. I noted that Rubens’ family portrait showed his wife holding his son on a leash, and the guide responded that the boy was also wearing a “bumper” helmet to guard his head against falls. It sounded like a good product for modern toddlers.

There was also an ancient Hellenistic bronze statue of Cupid fallen asleep on a ledge that reminded me of James.

The very popular Madonna and Child theme seemed much more interesting to me than it ever was before. Every artist re-shaped Mary and Jesus’ features to reflect his own people’s, making it easier for his viewer to identify with the Holy Family. Italian Mary looked very different from Dutch Mary. Here is a nice French Mary (by Boucher) with a John the Baptist who looks a little like James:

In one medieval portrait, baby Jesus brushes aside Mary’s head covering to gently touch her face; in another, He appears to be yanking her head covering (or hair) and kicking her. I guess it was tough for those proto-Renaissance artists to know where exactly to draw the line between “adding movement” and “keeping it holy.”

I, too, now identify with Mary as a parent who was in way over her head and also who eventually lost her son, at least temporarily. I keep reminding myself that even if James were living, a sword would still “pierce my own soul too” in terms of suffering over his ongoing pain, disappointments, or struggles (Luke 2:35).

It’s strange, watching life start to close back up over the hole someone has left. Our house now looks like it did in the years before James was born, except with pictures of him everywhere. We decided it would be best for the grandmothers to help me take apart the nursery soon after he died. If we ever have another child, we will re-decorate it for him or her.

We set aside some things to keep or give away that were so closely identified with James that we didn’t want to use them with another baby. I made a memory box with a little blanket from the NICU, his 100-day star, his favorite stuffed monkey that goes “boing,” our favorite onesie, his tiny “sweetbabyjames.info” Walk for the Cure team shirt, a pump belt, a hearing aid visor, lots of photos, and his heart-shaped medication box which now contains a string of gold beads, his therapy brush, Mister Lion, and of course, his first buddy, Mister Bee.

I donated his non-pump diabetes supplies to a three-year-old boy named Caleb who was diagnosed with Wolfram syndrome (please join his mom in praying that the docs are wrong). I sent his pump and supplies to Ipump.org, a charity run by a Christian mother of special needs and diabetic kids. She assured me that James’s pump would be given to another diabetic child. The feeding supplies were divided up amongst the good folks in the SpecialChildExchange yahoo group. My friend Susan’s daughters enjoyed getting some sparkly necklaces “from James.”

Some friends have asked us whether it is difficult for us to see other children now. Sometimes it is, but that is really something left over from our sadness about James’s limitations and disabilities. Usually we see children and think, we have children too, and they are very happy and healthy and love the Lord (and if you think your honors student has skills, well, ours can fly!). It is much much easier to be around children now than it was when we were infertile. We have had a child, just not for a long time, and we enjoyed him so much.

I read recently that the Hebrew word meaning to love, desire, delight is first used in the Bible when God tells Abraham, “Take your son, your only son, Isaac, whom you love, and…sacrifice him” (Gen. 22:2). Isaac was a child of promise, a dear hope which God rekindled after human wisdom had despaired, and Abraham and Sarah probably centered their lives on the boy (I bet he was a little spoiled). Abraham was obedient to the unthinkable, in faith following God despite the wild protests of his own heart. God was teaching Abraham (again) to submit his emotions and his human understanding to the (sometimes mysterious) plans of a good, faithful, loving God. In the end, God spared Isaac, and Abraham responded with worship, summing up his lesson as “The Lord Will Provide.” The outcome of this story points Abraham and us to God’s good, loving, yet terrifying plan to sacrifice His only Son, in whom He delights, on our behalf so that we could be united with God, and those who delight in Him, forever.

I have to keep reminding myself that God understands our grief for the one we delighted in, and that, in His good plan, James’s life has a very happy result, not a sad one, like it seems to sometimes from my emotions or limited understanding.

Here is a video we rediscovered after James died, showing John delighting in his only son, whom he loved.