Eliza's birthday

Dear family and friends,

(Daniele here, with no impossible promises of a short message today):

I have a lot of half-written emails in my head, partially composed when I'm too thought-full to sleep but too tired to get up and actually write. They'll all get written eventually, I think; for today, I give you three distinct pieces, in no way connected, really.

The first piece is about Eliza's birthday. It's today, January 29. She would have turned three today. What to do with Eliza's birthday has always been a bit of a muddle for us; you'll likely remember her first birthday party, attended by more people than our wedding and requiring a gymnasium to host it. Her second birthday was quiet, at home with some friends and neighbors, and she slept through most of it, anyhow. Birthdays for kids, really, are about celebrating and treating the child...and Eliza was never really able to receive gifts or treats. So those celebrations were for us, and I always met them with mixed emotions.

But now what? Eliza's birthday was fast approaching--and so close on the heels of her death--and we knew it wasn't a day we could just forget, but we weren't much in the mood to celebrate, either. For several weeks now, we've scratched our heads about how to make this day meaningful, both for us and for Luke. A friend encouraged me to think of something that could become a tradition. He reminded me that we're not likely to have a party and cake every year for the rest of our lives on Eliza's birthday, so it would be good to think of a tradition that we could continue each year. Great idea, but what?

A reverse birthday. That's the great idea. And I can't take any credit for it; it came from a blog I've read for quite some time now (and recommend you read, too: http://cfhusband.blogspot.com/). In honor of their micro-preemie's first birthday, this family brought gifts to the current residents of the Intensive Care Nursery at Duke, where their daughter spent several months. Brilliant.

So this afternoon, when Sam came home from school, we stopped at the cemetery to see Eliza's grave marker that was installed today and then headed up to Duke. We had baskets filled with small gifts, one for the parents and babies and one for the nurses. We brought things that, based on our experience, we thought would be helpful for the folks in the ICN: for the parents, baby valentine socks and t-shirts, disposable cameras (we always kept one in Eliza's bed, in case we missed an "important" bath or other big moment), and tissues (I could NEVER find a tissue when I needed one, which was often!); for the nurses, gel insoles (they stand for so many hours) and hair ties; and in both baskets, easily-portable snacks, drinks, and chocolates. Each basket included a note explaining a bit of our story and the reason for the gifts: we have been given so much--both in Eliza herself and through all of you who have supported us--and we're so eager to give back, even in a small way.

As you can imagine, returning to the ICN--and visiting with some of our favorite nurses and our friend-from-day-one neonatologist while we were there--was a very emotional visit. Of course, our first visit to the cemetery since Eliza's burial wasn't easy, either. Luke was pretty restless, clearly unsure of what to do with it all and eager to get on to the pizza and cake (with three candles, at his insistence) that awaited him after these "chores" were complete. It was emotional, challenging, draining, but something we're glad to have done. Maybe by her birthday next year we'll be ready to do it again...

And on to the second half-written email. This one is about what I know about God: He cares about the details.

The Tuesday night before Eliza died, Sam and I did not sleep. Sleepless nights were not that unusual during Eliza's life, certainly, but that Tuesday night, Eliza did sleep. In fact, by then she had reached a point of sleeping quite a lot. But Sam and I did not. We stayed up all night and planned her funeral. Mind you, we did not yet know that this illness would in fact be her last; but it was serious enough to merit a conversation, that much was clear.

Now, the reality of Eliza's almost-three years was that we had discussed what her funeral might look like with some frequency; Eliza had many "close calls," and conversations about her death were never far from our minds. And never once had we agreed on one bit of what her funeral should look like. So when we entered that conversation that Tuesday night, I expected fireworks and frustration. But we agreed on every detail. Our conversation was filled with, "Good idea"s and "What do you think of"s and "How about this"es, and not one argument ensued. And in the course of that conversation, for the first time in a while, I became very frightened.

As I explained to Sam, it suddenly occurred to me that, unlike the other times when Eliza had had "close calls," this time, all seemed prepared. You may remember the stories from her other serious illnesses: we were in Syracuse, or our beloved pediatrician was out of the country, or our friend-from-day-one neonatologist was out of reach, or Eliza's grandparents or godparents hadn't seen her in so long, and on and on. Each time, we had thought, "This can't happen now! What about so-and-so or whatnot?" But this time, for the first time, all the ducks were in a row. Hospice was back on call, and was ready to help when we needed them; all our favorite people were in the loop and available; we were home; we were ready. And now we agreed on every detail of the funeral.

I was scared.

It appeared, for the first time, that God had indeed put all the pieces in place to call Eliza Home.

Now, I don't claim to know what "needed" to be in place for Eliza to die. But I do believe that God's plan for Eliza included small mercies for us, as well. And I believe that He revealed a small bit of that plan to me--to us--that night, as He showed us that all the ducks were, indeed, in a row. God cares about the details.

And I flashed back to all the times throughout Eliza's life when I knew only God could have ordered the details as He did. Many of those details are recorded in old blogposts, so I won't repeat them here, but there's one I'm not sure I have ever shared.

Visiting Eliza in the ICN at Duke those first ten weeks of her life required parking in a parking garage (incidentally, returning to that parking garage today was another very challenging moment). Most days, Sam and I would drive laps around that garage, sometimes for fifteen or even thirty minutes, looking for a parking spot. I grew to hate that winding search...but I learned to fear the rare occasion when we pulled in that garage and found a parking space right away even more. Because, you see, each time that happened, we inevitably found, as we entered the hospital, that we had in fact needed to be there right away. There was always some crisis just brewing, some impossible-to-track-down-specialist just poking his or her head in, some medication change that we needed to question. And on those particular days, if we had driven around and around searching for a parking spot, we wouldn't have made it into the hospital in time. God cares about the details.

And in fact, after that Tuesday night, when we saw all the details and had a hint--just a small nudge--at God's plan, after that night, more details "fell into place." I had no idea how complicated it would be to get the morphine our hospice nurse recommended we have on hand--just in case--the night before Eliza died. It was a near-miracle requiring much work on the part of our pediatrician and a front-porch prescription hand-off followed by a rainy dash to the hospital pharmacy just before it closed to fill a prescription somehow found by a medical-missions friend of our pediatrician...I still don't quite know how it happened. But I do know that God knew we would in fact need that prescription that night, and He made sure we got it. God cares about the details.

There are so many more bits of the story like this, where God had it all worked out long before we even thought to try. But why do I care so much now that God took care of all those details?

Because if He did, if He ordered all those details, then He is in charge of the details of my life, too. What a comfort that He knew--even planned--that emotional meltdown I had as I drove by myself in the car the other day; that He prepared those snow days last week that so eased my transition to sending the boys back to school and being home alone; that He knows each child and each family to whom I have shipped all of Eliza's equipment and medical supplies this week. Psalm 56:8 says, "You have taken account of my wanderings; put my tears in your bottle. Are they not in your book?" God cares about the details.

The third half-written email has something to do with Jesus' mother Mary. If you attend our church and you read this year's Advent devotional, you may have read the reflection I wrote about Mary. I wrote it months before Advent, and I don't know how it ended up the selection for just a few days after Eliza died (actually, I do know: God is in charge of the details!). If you haven't read it, take a minute and go here to read it: http://mommytrenches.blogspot.com/2008/11/in-anticipation.html

Since Eliza died, I've spent some more time thinking about Mary. I've been thinking about what it is like to know God had a plan and a purpose for your child's life. To have lived to watch your child suffer and die. And to know that God has a plan for that suffering, that death, to know that He had redeemed it even as He ordained it.

Let me pause to assure you that it is hardly my intention to compare Eliza's life to Jesus' or, for that matter, mine to Mary's. There is no comparison between God incarnate and a sick little girl.

But still.

It's another instance where I think I might understand just one small bit of what Mary experienced. After all, she carried her Child, nurtured her Child, raised her Child, taught her Child, loved her Child...and lost her Child. He had to suffer and die...and be taken from her. But He was never hers, really, was He? Nor was Eliza mine.

Mary knew from the beginning that hers was no ordinary Son. I, too, knew from early on that Eliza was not an ordinary baby and that she wouldn't be "ours" for long. But for neither Mary nor me did this fact change how we loved our children. And I believe that Mary grieved her loss deeply, even as she knew that God's plan for her Son--His Son--was perfect and right and Good. That truth notwithstanding, she had lost her Child, had seen Him suffer and die.

I believe I understand just a little bit better how she felt on Good Friday.

I know God had a plan for Eliza's life. I know--have heard from so many of you--how He has used her story to touch so many lives. But that doesn't change the essential fact that I have lost my daughter. And I grieve that loss deeply. Even as I trust God's plan, trust that He has every detail under control, I mourn what these few small details mean for me.

So maybe these three disconnected emails really aren't all that disconnected after all. God cares about the details: the details of Eliza's birthday, her life, and the lives of those at the ICN today; the details of my life, my grief, and my still-unclear tomorrows; the details of His plan for Eliza, for me, and for our family.

(And from Sam):

I've just read Daniele's words, as you have, and I feel deep gratitude for the softness of Daniele's heart--a softness that is the result of the firm but gentle massaging of a loving Father. I have only two brief thoughts to add.

One is about suffering and grief. "On the night that he was betrayed, Jesus took bread and, when he had given thanks, broke it, and said, 'This is my body which is for you.'" I have found that the experience of suffering and grief drives one self-ward with terrific intensity. It amazes me that Jesus, on the very night that he was betrayed, sat with the people who would betray him and emptied himself to the point of 1) giving thanks to the God who had ordained his ordeal and 2) offering himself completely (the metaphor of food consumption could not be more explicit) to his traitorous friends. I can only think: what wondrous confidence, that sprung up into such faithful obedience. What love there is in the Trinity!

The other is about resurrection. I'm glad that there's so much fear and running and falling down in the accounts of Jesus' resurrection. It makes so much sense to me now. Now that I know death, now that I have held the one whose heartbeat made my heart beat--held her still and ever colder in my arms--now I understand why resurrection is a chaotic confusing make-your-head-spin kind of thing. I can't wait. Come, Lord Jesus.

With love,
the DixieJax

Funeral video and sermon link

Dear family and friends,

Thanks to the diligent work of several good friends, the video of Eliza's funeral is finally online! In fact, two friends managed to complete the challenge (and it was a challenge!) of uploading it at the same time, so there are two different places to access it. Hopefully, one will work for you.

http://gallery.me.com/gregmyers#100000
http://vimeo.com/2744382

Please feel free to share this with anyone who might be interested. I'll post it on the blog, too.

Also, although it was not part of the funeral, our associate pastor and dear friend's sermon in church the day before may as well have been. It was a powerful message of hope and had much to say about Eliza. We'd love for you to listen to it and hope it will move you as it did us. The audio recording is online.

http://allsaints-chd.org/sermons/WhatareWeWaitingFor.mp3

We're headed out of town for a long family fun weekend (Google "Great Wolf Lodge" if you're curious about what we'll be up to) so will be out of touch for a few days. We covet your prayers for a fun, refreshing trip--especially for Luke--and for our continued adjustment to "real life" when we get back.

We love you and continue to be so grateful for you!
Daniele (for the dixiejax)

DixieJax family update 1/3/09

Dear ones,

First of all, let me clue you in: Daniele here. Over the years, Sam's and my combined "dixiejax" emails have managed to stump sometimes even our families as to who was writing what...and I don't want my ramblings and likely-gaping omissions here to be mistaken for coming from Sam, too! (Incidentally, for those who have asked, "dixie" = of the South, and "jax" = abbreviation of Jackson).

I have just spent two hours, home alone for just about the first time in nearly three years, reading and weeping through the hundreds of emails we have received since December 11. I have in front of me a list of all the things I have thought to share with you over the past few weeks...and now, having read your messages, I know there is so much more to add. But after two hours of reading, tonight is not the night to write that message. So this will be a quick message, with the promise of more to come, both from me and, no doubt, from Sam (as I promised to someone at the funeral, the blog is far from finished!).

What cannot wait until I've finished composing my thoughts, though, is a totally-insufficient expression of gratitude. I was raised right, always getting my thank-you notes in the mail just as soon as the gifts were unwrapped, and I'm doing my best to raise Luke the same way. But I am awed and overwhelmed and ashamed at how many people I have to thank for all you have done for us over the past three years...and in many cases, I don't even know who to thank, and may never.

Do you know that we have never paid one medical bill in the last three years? No doubt many of you do, as you have paid those bills for us. As the details of the Eliza fund have always been kept anonymous, we do not even know who you are. I cannot find the words to express our gratitude for having been relieved of that burden, not to mention the new burden of funeral expenses. I do not now know--nor will I ever--how to tell you what your gifts have meant to us. You have freed us from worry and saved us from a heavy burden: Thank you.

Do you know how many letters of support, care, love, and sympathy we have received over the last three years? There are 1,110 emails in the folder where we save all the messages you have sent about Eliza, and we have a trunk full of cards and letters, as we have saved every one. So many of you write of cherishing OUR words in these emails/blogposts; please know that we have cherished yours every day over these years. We are so grateful for your messages, cards, and such generous gifts, some received anonymously, even, from perfect strangers. You have uplifted us: Thank you.

Do you know that while we were out of town our kitchen and dining room were painted and our entire house--literally ceiling to floor--was cleaned? I may never know who taped around all those windows, organized my pantry, moved my refrigerator, folded my laundry, organized my books, sorted through my closet, cleaned three years of dust from my corners, brought me new towels. But I am so, so grateful. You have delighted us: Thank you.

Do you know how much food has been provided for us? No doubt, you do, as you have cooked for us, filled my refrigerator with groceries, my pantry with food, my counters with cookies and treats. I may never know where all of it has come from, may never know who to ask for the recipe for that delicious something-or-other. But our bellies--and those of many visitors who have come through our home, especially these last few weeks--are so grateful. You have sustained us: Thank you.

Did you know Santa and his elves are real? And so very generous and thoughtful and thorough...they've visited and amazed us every year since Eliza was born. You'd be astounded to meet the real guy--with that characteristic twinkle in his eye--and his amazing team. You have enthralled us: Thank you.

Did you know doctors still make housecalls? Day, night, and in between? And phone call check-ups from out-of-state, emails from out-of-the-country? Eliza's doctors do. Those of you who know our beloved pediatrician, our friend-from-day-one neonatologist, our hospice nurse and social worker, our dear physical therapist, our other favorite doctors and nurses and pharmacists and technicians and therapists will probably not be surprised. You who are in our medical family have endured my relentless phone calls, emails, theories, questions, questions, questions. You have scratched your heads with us and worked when no person could be expected to work with us and cared for Eliza--not just Eliza's never-before-seen brain or her twisted intestines or her interminably-flailing arms--but for Eliza, our little girl and yours. We are so glad to have shared her with you. You have cared for us: Thank you.

Did you witness the celebration that was Eliza's funeral? (If you didn't, stay tuned; video to be posted online soon). Did you sample the treats at the reception afterwards? I have no idea who provided all that food, set it all up, broke it all down, coordinated the no doubt massive effort to make it happen. I have no idea how all those who made the service happen managed to take our meager "we'd like it to be like this" and turn it into such a perfect celebration in a matter of just a few days. I could not be more grateful for that day. You have blessed us: Thank you.

And I know as soon as I send this email I'll be reminded of more things for which I am thankful: as I look into my bedroom, transformed by new carpeting and a comfy chaise in place of Eliza's crib, in which to read and rest; as I read through another day's mail, filled with cards and books and gifts, some from complete strangers; as I finger my Eliza bracelet, lovingly made by a student I may never even have met; as I read the next email to come across my desktop, listen to the next voicemail, or receive the next phone call; as I think of all the people who have helped us care for Luke; as I wander downstairs to my deligtfully-stocked kitchen for something to eat, my fabulously-organized bookshelves for something to read; as I suffer a weak moment and remember the dozens of people lifting me up in prayer, even now. The words on my bedroom wall (yes, words on the wall!), once over Eliza's changing table and now over her trunk of mementos, remind me to,
"Be calm. Be strong. Be grateful." Though being calm and strong is somewhat more difficult today than it was when I read those words as I stood in that spot so recently changing Eliza's diaper, being grateful has never been easier. I am humbled and amazed at how deeply and well you have loved Eliza and us, and I only wish I could communicate my thanks more fully. The words on the wall over our bed, just across the room, read, "This is what I believe...Love is patient, love is kind." Indeed. Your love is more than kind, your patience--with long emails, with long-awaited thank-yous, with unreturned messages and emails, with our inability to grasp all you have done for us--is long-suffering. I am so deeply, deeply grateful.

And thus ends my best-but-failed attempt at a short message.

"I thank my God every time I remember you." (Philippians 1:3)

With gratitude and a heart overflowing with love,
Daniele (for the dixiejax)

memorial contributions for Eliza

Dear ones,

Thank you for your love. We have not yet had the opportunity to read all the expressions of sympathy that you have shared. We look forward to this. In the mean time, just reading your names in our inbox is moving and encouraging.

Many have asked where to direct memorial contributions for Eliza. We have suggested two possibilities. They are listed below:

The Eliza Jackson Fund
Trinity School of Durham and Chapel Hill
4011 Pickett Rd. Durham NC 27705

Kids Path
914 Chapel Hill Rd.
Burlington NC 27215

We pray with you and for you to the God of all comfort.

Love,
sam

services for Eliza

Beloved,

Thank you for your ongoing prayers. We miss our sweet girl.

We are finding out how much we loved her.

We are clinging to the Promise of the eternal embrace of Jesus.

Here are the official arrangements (to be published in Saturday's papers):

Sunday, December 14th
5pm-8pm: visiting hours at Hall-Wynne funeral home 1113 W. Main St.
Durham, NC 27701-2028

Monday, December 15th
2pm: burial at
Maplewood Cemetery
1621 Duke University Rd
Durham, NC 27701

3pm: funeral service at
Blacknall Memorial Presbyterian Church
1902 Perry Street
Durham, NC 27705

4pm: reception to celebrate Eliza's life (Blacknall); bring memories and tissues--and please feel free to send reflections along if you'd like them to be shared at the reception but cannot attend

Love,
dixiejax

Eliza Crowley Jackson

Dear family and friends,

Eliza passed from our loving arms into her heavenly Father's this morning at 9:15. We were holding her together, she was quiet and peaceful, and she is now a new creation. We are sad and so very grateful. Luke has been here with us for all the right moments, has continued to ask good questions, and has been able to spend time with dear friends at the right moments. He loves his sister and her Father, and he knows she is now well.

We will let you know about arrangements as that information is available, and we covet your prayers for all this "business" that feels so surreal. The tentative plan is to hold visiting hours on Sunday evening and a funeral service on Monday morning.

"If only for this life we have hope in Christ, we are to be pitied more than all men. But Christ has indeed been raised from the dead, the firstfruits of those who have fallen asleep" 1 Corinthians 15:19-20. Eliza took her last breath on this earth with the last word of these verses leaving her father's lips. Alleluia.

With love,
Daniele (for the dixiejax)

Eliza update 12/11 4:30pm

Dear friends and family,

Thank you so much for all your expressions of love and care for Eliza and us; please know that we're reading all your emails and listening to all your messages and treasuring each one, though we can't keep up with responding to all of them. Our dear friend Kelly Kirk is helping us disseminate information and coordinate help as needs arise; you can contact her at kellkirk@gmail.com if you'd like. We'll do our best to keep sending general email updates as much as possible. Eliza has so many friends, and we feel so well cared for and loved.

We met today with the hospice nurse and social worker who have been assigned to Eliza from the very beginning. It has been a long time since we've needed their help, but it felt as if we'd barely skipped a beat. Both are very kind and loving and very, very helpful, both in understanding what is happening and in planning for the hours and days ahead. We are so grateful for their expertise and for their care for Eliza and our family. They will visit again tomorrow, and are available anytime should we need them overnight. Though no one can predict with any accuracy what to expect, the nurse was able to tell us that should Eliza's condition not change for the better over the next twenty-four hours, she is not likely to recover. At this point, she is still fighting the virus and could take a turn for the better, but with oxygen levels and heart rates sustained at poor levels for several days, there is only so much time for recovery. That is not to say
that death is imminent; she may well fight for some time, even if there is no chance of recovery. But by tomorrow morning, we should have a clearer idea of what to expect.

And so, we are keeping Eliza comfortable. She does not appear to be able to sustain much awake time comfortably, so we're using her sedative as much as needed. When sedated, she sleeps very well and doesn't seem to suffer. The hospice nurse and our beloved docs are helping us sort out what other comfort measures may be necessary in the days to come. We are in capable, caring, gentle hands, both those of our Savior who awaits His sweet daughter, and those He has put here to help us care for Eliza as we wait.

If you are in the area and would like to, you are welcome to join us in our living room tonight between 8:00 and 10:00pm to pray. Please feel free to come during all or some of that time. I will not list our address here, as these Eliza updates have the tendency to spread far and wide and are posted on the web as well, but I suspect that most of you have access to our address or someone who does. If you don't, feel free to call or email, and we'll do our best to get back to you with directions.

With gratitude for you and your love and prayers,
Daniele (for the dixiejax)