Kara's words of remembrance

Because I couldn't post it right on my iPad and don't have a computer handy. Hers deserve their own post anyway.

A few weeks before James got sick, our Sunday school class talked about the parable of the paralyzed man. Do you all remember the paralyzed man whose friends lifted the man through the roof in order to see jesus? Mark 2 says that when Jesus saw their faith, meaning that of the paralytics friends, he was healed.

Dear friends, you have truly been the ones to lift and sustain us during this time. Our Sunday school class, foundations, has been a stunning example of the body of Christ. I can't tell you how you have not only fulfilled every material need for us, but you have provided spiritual support in ways that we couldn't even have asked for.

Because if you, we have been able to raise our eyes to Christ, but-only because you are holding us up.

Words cannot express our thanks and love for you. We are so grateful for every one of our prayers, thoughts, phone calls, emails, Facebook messages, blog comments, and visits.

Thank you for showing us how to truly love- it is through you that we have become better parents and show christs love to James.

Day Twenty Eight

Twenty eight days ago, James was alive and well, suffering a persistent summer bug. 4 weeks, less than one month. Today we buried him and celebrated his life in memorial. In that period, I have learned the word rhabdoid, brushed up on anatomy, and taken a crash course in neurosurgery. All in less than the time that it once took to get through half a quarter of law school. Holidays came and went, days of the week, once so important, faded into inconsequential 24 hour cycles as everything, everything became regulated by James' health. We ceased to note the passing of the weeks, even the season came as a surprise. I suppose today was meant to end that, that we gather before a hole in the ground and in a church with friends and family to say goodbye. The process is not nearly so neat however.

Today felt surreal. Early to the funeral home, a brief visitation with a body that was a poor imitation of my son but which nevertheless moved me to tears. We buried him with his Sophie giraffe, his giraffe blanket taking the place of the lining of the coffin. His giraffe rattle and pacifier, and finally the first and last book we read him- "On the Night You Were Born" with the simple message that was always so true for James, that you are the one and only ever special you. We read it to him in the hospital the night we met him, and we read it to him the morning of the day we said goodbye. The cemetery service was intimate and dignified, our family sharing freely about James and his enduring legacy in each of us while the minister ably returned him to the soil. Dust to dust, ashes to ashes.

The time between the burial service and the memorial service passed quickly and in a daze, as though we still could not quite believe the first had happened and that the second would follow. I wrote something to say at the service, and Kara slept. I wrote it out longhand, which forced transcription onto the ipad. My handwriting remains atrocious, no matter what the circumstance. I don't think either of us quite came to believe it was real until we were standing there, in a sanctuary filled with people gathered to mourn James, canvas pictures of him a few feet away from us.

The service itself captured what we wanted it to- a positive, affirming testament to James life and a celebration of the time we had with
him rather than a mourning the time we will not have. The ministers ably coached our words from this blog and the scripture into a coherent whole, a task complicated by the complete randomness with which we chose that scripture, verses and chapters drifting into our minds while we sat with the minister. Like so many other things, we committed quickly and without thinking- we had no time for anything else. Kara and I both spoke, Kara thanked everyone for their support, and I mumbled a few things about James, the only subject it seems I'm fit to speak on recently.

Afterwards, the foundations class hosted a terrific reception complete with no less than 100 dozen cookies, brownies, and treats I ate whose names I simply do not know. We were overwhelmed by the number of people who attended, and by the outpouring of love and support for us and for James. Thank all of you, though we'd never admit it, I think both of us worried we'd have an empty room. It was deeply gratifying to see so many people there, all of whom had lives that had not been operating at stop for four weeks, celebrate our son. We cannot thank the church and the class enough for putting all of this together for us. We are deeply humbled.

Afterwards we returned home. I have no idea what happens next.

Thank all of you for your continued prayers and support, and thank all of you who took the time to come. I keep expecting a punctuation mark on this journey, some signal that a chapter is closed and we should move in to the next. I have yet to find it. Below are the words Kara
and I spoke today.

My part:
We knew a lot about James. We knew his smile and the easy, always welcome sound of his
laughter. We knew of his preference for pears though never before mommy milk. We knew how effortlessly and continually joyful he was. Always eager to play, and eager to make new a acquaintances.

When taking his last photo shoot the photographer asked us if he had any favorite toys that might make him smile. We didn't really know what to say. He wasn't big on toys, he was big on you, big on interaction and play. No thing or object in particular moved him- he just wanted people. If they wanted to play with toys, fine. James just wanted to play with them. He liked to experience the unexpected from them- a silly face or the swish of a ponytail. Even in the hospital the surest way to calm him down was to take a walk with him in the stroller or on your shoulder.

With so many new things to take in he couldn't remember to be mad- and he wasn't really good at staying Mad anyway, it just wasn't his gift. He definitely didn't get that from me. There are many things though we will never know about James. We will never know his favorite movies, cars, pizza, color, if he was right handed, left handed, or simply ambidextrous. We lost James before he could tell us all of that- and I believe he would have let us know very loudly. He was anything but subtle.

Even though we will never know so much, even though so many hopes and dreams will never translate into memory, We can still know a lot about James. We can know the perfect love that surrounded him always. We can know how desperately we wanted him. We can know how blessed we were by him, our once and future angel. We can live each day with the same joy and the same boundless, eager love. We will miss James horribly and constantly. But we will not ever have to forget him. We can always know him, and visit from time to time that warm space he occupies in our hearts. We can wait in eager anticipation of the day when we will see him again and bask in the warmth of his smile. And we will, we always will.

Goodbye son, we love you. Always. We will see you soon.

Kara:

Day Twenty Seven

When I picked out a picture to pair with this post tonight, it occurred to me that eventually I will run out of pictures. Eventually I will have seen every picture of James, have used every image in one way or another. Because James is gone, a finite number of pictures exists. The supply is limited, and it cannot be replenished. I wonder what happens when we run out. I wonder what he would have looked like in a month. The shock of dark brown hair he was born with was slowly being replaced with new, blond hair, a concession to me as in every other way he was identical to his mother. His mother's nose, his mother's lips, and cheeks. Even his eyes were closer to her shade of blue than mine. He had my short, stubby legs though. Poor boy. I was always pleased he looked like Kara. The hope was he inherited her personality as well.

We took different paths today. I went passive and Kara went aggressive. I went asleep last night and slept for nearly eleven hours, and did not want to wake up. Kara slept not at all and attacked the day early and often, calling and setting up James' fund, attending to flowers (we're only doing flowers for the casket spray- no others), and dropping off James' clothes at the funeral home. We decided to bury him in a polo shirt, shorts, and puppy shoes. We didn't want somber clothes. James was never somber. Kara bought the polo last summer, when she was pregnant with James. It matches one of mine she also bought. We matched a lot- even on one of his last days, he wore a seersucker set of overalls that matched my seersucker shorts. We'll send him on his way with a few giraffes as well.

We met with the minister and finalized plans for the service. We're hoping it will be upbeat, a tribute to a boy who hated naps and loved people. Kara will wear a giraffe print dress, while I will wear a jungle themed tie with giraffes and an orange shirt. Although we mourn James, we feel overwhelmingly that his life was joyful in every way, and should be celebrated as such. To mourn seems inappropriate. Even with three IV and a brain tumor, James wasn't big on mourning. Too boring.

To prove humor still exists, Ferragamo actually makes a giraffe print tie. I called or had someone call everywhere in Texas that would have this tie. I could not find it. The closest thing was a jungle print tie that includes giraffes at Neiman's. The tie was $170. This will instantly make it the nicest tie I own. I've bought whole suits for less than that. Without thinking, we also bought an orange shirt there. We just picked a random one. It looked nice, but you know, a shirt is a shirt. When we checked out, we got a little sticker shock. The shirt was $500. Brioni. Chastened, we purchased a similar, cheaper Ralph Lauren shirt at Dillard's and returned the Brioni shirt. Which just goes to show you that my father and I really have no business shopping off the rack at Neiman's. We laughed.

Often, Kara and I pass each other in our grief process. She'll be mad when I'm barely speaking, and vice versa. The process lacks any kind of structure. It's more a free form disaster. The stages feel more like moods. That is not to say we do not believe James is healed- that he beat the tumor. We do. But we miss his presence, just his being there. We miss his smile and his silliness- how much he loved to fly, he was a bit of a thrill seeker. Throw him up in the air and he'd cackle all the way down. He got that from me. I always expected one day I'd try to take him skydiving and Kara would arrange to have the plane destroyed the night before. We miss the future we never knew.

Very early tomorrow, we will bury James with our family, in a place I'd never been before Sunday and where Kara hadn't been in years. We will put him to rest and say goodbye. That afternoon, we celebrate his life. After that, I have nothing more to "do." We'll see what happens then.

Your continued support and prayers are deeply gratifying. If you can, please consider making a donation to James' fund. We certainly are. I think we'd rather do that than buy a few Brioni shirts. Rhabdoid tumors are a relatively new type of tumor- until recently they were misdiagnosed as another type of brain tumor, and Doctors were simply confused why some patients diagnosed with the other type of tumor did so poorly in comparison to others. In the words of our oncologist, they are "orphans" when it comes to research funding. Gains are being made. We hope to contribute to that.