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)

Eliza update 12/11 10am

"But as for me, my prayer is to you, O LORD. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness." Psalm 69:13

Beloved,

We, and so many of you, have prayed for Eliza's Peace and Comfort. It is tempting for us to dictate when the "acceptable time" should be for Eliza to Rest. We do not know whether this is that time. We do know that God answers according to his abundant love and faithfulness. We cling to that. Sometimes just barely. But He is clinging to us and will not let go.

Eliza's condition has not developed to the point where we can draw any definitive conclusions. We all had a sleepless night, except Luke (alleluia). Eliza finally fell asleep at 3:30, with the help of an extra dose of one of her standard sedatives.

Over the course of the night, Eliza's breathing became more difficult, more wheezy (pardon the medical jargon). Her oxygen saturation remained pretty constant in the 70s (normal being near 100), but she did not show signs of this desaturation in the pigmentation of her skin. Her oxygen saturation remains in the 70s this morning, still without much evidence of this to the naked eye. Our precious Eliza has always been full of such tricks.

At this point, we believe that the RSV (respiratory virus) has caused some scattered pneumonia in her lungs. There is no indication that this has become a bacterial pneumonia. The main difference is that Eliza's immune system may be up to the challenge of a virus. It likely would not be able to handle bacteria. And so we wait.

Over the next 12-24 hours, we expect to have a good idea of whether the disease will progress or be defeated. We hope to have prayer time in our living room this evening with as many as desire to join us in calling on the Father, through Jesus His Son, in the power of the Holy Spirit. If you are interested, please check your email later. We will provide details then.

Some of you, I know, have been particularly concerned about Luke throughout our time with Eliza. Yesterday evening, we discussed the situation with Luke. His initial response was to become hyper and fidgety in my lap. He is a five-year old boy and a Jackson, after all. As he began to understand what we were sharing, he declared: "I'm gonna protect her. I won't let her go." Of course, as his and Eliza's parents, we wept tears of joy and sorrow at his words. We celebrated his love for his sister with him. Then we talked about Jesus welcoming the little children to himself, despite the disciples' resistance. He got it immediately. We love Eliza well. He loves her better, and when it is time, she will go to him, into his arms. Love lets go.

Love,
Sam (for the dixiejax)

Eliza update 12/10

Dear family and friends,

Since our last update in July (!), I've many times meant to sit down to write a no-news-is-good-news update. To share pictures from the last few months, to tell you how big Eliza has gotten, to share how Luke likes kindergarten (loves it!), to tell you about the process of finding a home health aide (an as-yet resolved saga!). And each time I've meant to do that, I've been distracted by something else.

This morning, I'm writing a different email. This will be brief, as I need to get to the daily grind in just a few minutes, but I wanted to let you know what has gone on over the last day or so.

Here's what we know and what we don't: Eliza (who has been sick for almost two weeks, though took a turn for the worse over the last several days) has RSV, with some evidence of (what looks like a viral) pneumonia in her lungs. You may or may not have heard of RSV; it's a cold-like virus that goes around every year. In healthy kids and adults, it's no big deal. It usually makes news for its effects on preemies or kids with compromised respiratory function, in whom it can be very serious. Eliza, who has generally healthy lungs but a history of reactive airways (kind of like asthma) and a pretty weak cough in general, falls somewhere in between those two categories.

As of yesterday, Eliza was very sick. Her breathing was very wheezy, her oxygen levels significantly compromised. She was alternating between whimpery and apparently uncomfortable and very, very sleepy. As you probably know, viruses don't have "cures". There is not a treatment, per se, for RSV or a viral pneumonia. There are, however, some symptomatic medications. So yesterday, we began two treatments: albuterol, an inhaled medication (through a nebulizer), which can relax and open the airways; and prednisone, a steroid, which can reduce airway inflammation. Sometime during the early hours this morning, these treatments seem to have provided Eliza some relief. Though she is by no means breathing normally this morning, she is breathing much easier and sleeping. This is a great comfort to us and we imagine to her as well.

Time will tell, likely over the next couple of days, what Eliza's body will do with this infection, and particularly whether the evidence of some pneumonia in her lungs will clear up with the virus or become something more significant. We will certainly keep you posted as things develop. For now, we appreciate your prayers. "But now, Lord, what do I look for? My hope is in you" (Psalm 39:7).

With love and gratitude for all of you,
Daniele (for the dixiejax)