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)

Generations

Eliza and Luke with (from left) Great Uncle Mark, Great Nana, Great Papa, and Great Aunt Barbara. One for the album...

Eliza update 7/22

Dear family and friends,

We've been very busy having a leisurely summer around here! Taking full advantage of Sam's light summer schedule, we have in the last month spent ten days in Syracuse with our extended families and a long weekend in Atlanta with more of my family. For the former, we're grateful to have had a very different experience from last summer's visit, when Eliza ended up in the hospital with an infection at her feeding tube site; this trip, we were able to thoroughly enjoy the company of all our Syracuse family, Luke being especially thrilled to have had lots and lots of cousin-time, of course. And for the latter trip we're especially thankful that Luke (and Eliza) had a chance to spend some quality time with not only a great-aunt and great-uncle, but GREAT-GRANDPARENTS, too! (How many kids can say that?)

When we haven't been travelling, we've kept busy staying cool: Luke and I have spent as much time as possible underwater, as he has become a much more confident swimmer daily, it seems; and Sam and Eliza have taken advantage of the quiet, air conditioned house for reading and/or sleeping (sometimes both at once, in Sam's case!). If he's not underwater, Luke is usually reading, too. There's been plenty of soccer, bike riding, trampolining, baseball, swinging, scootering, etc, etc, etc...not to mention repainting, rearranging furniture...ahhh, summer.

As for Eliza, she's had a relatively long stretch of hard, sleepless nights, at one point going from Tuesday night to Sunday morning without anything more than an occasional catnap. As usual, these difficulties are unexplained, though a recent increase in one of her medications seems to be helping her get back to a more "normal" pattern. As always, these sleep difficulties bring significant frustrations (not to mention exhaustion) for us. I especially find myself struggling regularly to accept my inability to help Eliza in any significant way...but I continue to be grateful for the reminder to depend on God as Eliza so clearly does.

As most of you who know me well certainly know, I'm not usually one to talk of mystical things with much comfort, but recently, for the second time since Eliza was born, I was given a clear vision of God's intimate, personal care for Eliza: in the early morning hours after a particularly long, hard night of futile attempts to help Eliza sleep, I awoke to see what I thought was Sam, standing next to Eliza's crib (which is in our bedroom), stroking her hair, as he so often does when there seems to be nothing else to do to comfort her. As my vision (literal and figurative) cleared, though, I realized it wasn't Sam standing next to the crib, but Jesus. (Interestingly, in my vision, he looked a lot like he does in _The Shack_, a novel by William P. Young, which I had read recently--and if you've read it, you'll know what I mean). That momentary, imaginary glimpse of the very real, very present, very constant care that God provides for Eliza, even when we
can't, was such a gift to me: what is impossible for me is not impossible for God. When I can't stay up all night with her again and again, when I can't make her arms stop flailing so she can sleep, when I can't prevent seizure after seizure from waking her up, when I have to leave her alone in her crib, she's not alone. She's not without comfort or without someone to hover over her and watch her every move, every breath. For that matter, neither is Luke, asleep all alone all the way across the hall in his very big-boy loft bed. Thank God.

"From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live. God did this so that men would seek him and perhaps reach out for him and find him, though he is not far from each one of us. For in him we live and move and have our being." Acts 17:26-28

"Our being": yours, mine, Eliza's.

Love,
Daniele for the dixie jax

P.S. Family photo taken by Sam's brother in Syracuse above. No, Eliza is not sleeping through being dangled over the side of a bridge; she just doesn't like to open her eyes in the sun!

Eliza update 5/20

Dear family and friends,

We know many of you have been eager to hear the result
of our feeding tube switch; I've thought many times
about sitting down to send out an update, but as is
often the case with Eliza, nothing seemed certain for
a good long while, so I thought it better to see how
it all played out first.

We are now breathing a sigh of relief at the end of an
unsuccessful experiment. As you'll recall, about a
month ago we decided to try a new kind of feeding
tube, one that bypasses the stomach completely and
delivers formula directly to the intestine. Bad idea,
as it turns out. Yes, it did stop the vomiting, which
was the goal; no, it did not come anywhere near
slipping out of place, which was the expectation and
fear. It did, however, cause Eliza significant
discomfort (the reason is such a long explanation that
it's not worth going into), so much so that she went
stretches as long as 72 hours without more than a
catnap.

So, after some experimentation, many phone calls with
several doctors, and a few extra trips to the
hospital, we (almost) all agreed that it was time to
go back to the old system, which, though not ideal,
worked well enough. So that's what we did last
Friday: Eliza now has the same old feeding tube she
had, and the same old ain't-broke-so-don't-fix-it
feeding issues (i.e. vomiting frequently). We're also
trying some new feeding strategies to relieve her
significant gas, a problem she's had for a long time
now but which was emphasized by this feeding tube
switch; we've tried basically every medical option, so
now we'll just do the best we can with what we have to
work with.

I confess that this month-long experiment has been an
exasperating experience for me (not to mention, I
expect, for Eliza!). Rather than dwell on the
frustration, though, I've decided to focus on what
we've learned:

1) Eliza does retain minimal consciousness, which we
have suspected but have never been able to prove
concretely. She has clearly demonstrated that she
feels pain and has a predictable response to it
(namely, wild arm flailing). On a practical level,
the question of vegetative state vs. minimal
consciousness isn't all that important, but on an
emotional level, as her parents, it's pretty
significant.

2) In addition, we've been able to sort out the cause
of an odd behavior that we've not otherwise been able
to understand, that is, wild arm flailing = discomfort
from gas. This is a big discovery, as this behavior
has perplexed us, as well as Eliza's doctors, for a
while now. We've had our suspicions that this was
connected to the gas; now we have proof.

3) What I think of as a questionable "mother's
intuition" may sometimes be God's whisper: I had a bad
feeling about this procedure from the start. This
isn't the first time that one of us has had--and
ignored--an inexplicable feeling about something that
has turned out to be right. It's a good reminder to
pray and ask for answers...and then to really listen
for them.

4) We have learned--make that, have been
reminded--what our priorites are in caring for Eliza.
We will do what is right by God and for Eliza, and we
will judge any medical advice we receive against those
infallible measures. One of my hesitations about
doing this procedure was whether we were doing it for
the right reasons. After all, Eliza isn't all that
bothered by the vomiting; we are. As it turns out,
doing what was best for us (stopping the vomiting)
wasn't necessarily what was best for Eliza. Though
the doctor who recommended this procedure sincerely
had our best interests (more sleep) at heart, we
forgot for a moment that we don't decide how to treat
Eliza based on what's best for us.

5) Our beloved pediatrician is a gift. Time and time
again he has walked through Eliza's challenges with
us, Saturday phone calls and mounds of emails and
endless consults with specialists notwithstanding.
Aside from being a really good and really well
connected and really dedicated physician, he serves
the same Great Physician as we do. He understands how
that fact guides our decisions, our plans, our hopes
and dreams for Eliza.

So that's where we are: back where we started a month
ago, grateful for what we've learned, glad this
experiment is over. Somewhere in the midst of all
this, Luke graduated from preschool and informed me
that he didn't want to have summer vacation; he likes
school too much and can't wait for kindergarten.
Sam's just weeks away from summer vacation (and ready
for a little summer break!), and I'm itching to get to
the pool...life with the dixiejax!

We are grateful for each of you and your prayers and
support, this day and always! "This is the day which
the Lord hath made; we will rejoice and be glad in
it." Psalm 118:24

With love,
Daniele for the dixiejax

Eliza update 4/24

Dear family and friends,

Just a quick update: for those of you who don't know,
Eliza had a gastrojejunal (G-J) feeding tube inserted
today. Basically, her feeding tube no longer empties
into her stomach but into the first part of her
intestine. This was not a surgical procedure; the
radiologist simply fed a new, longer tube through the
existing hole in her abdomen into her jejunum
(beginning of intestine) while watching under a
fluoroscope (x-ray).

The theory is that if we don't put formula into
Eliza's stomach, she can't throw it up. Sounds
wonderful, and you may wonder why we've waited two
years to try it. Unfortunately, it's a little more
complicated with Eliza, as always, since tubes like
this in kids like her (whose intestines, you may
recall, were rearranged when she was four weeks old
due to a bowel malrotation) have the tendency to slip
out of place (that is, back up into the stomach) and
need to be reinserted by a radiologist. In fact,
getting the tube in place today proved to be almost
too much for two radiologists--one gave up rather
quickly--as her insides are just so tricky! I confess
that, as I watched, I, too, was about ready for them
to throw in the towel; the procedure seemed very
unpleasant, and Eliza rather uncomfortable. But the
tube is in, and we're hopeful for a significant
improvement in her quality of life, not to mention our
quality of sleep. We'd appreciate your prayers that,
once again, Eliza will defy doctors' predictions by
keeping this tube in place! "The Lord is my strength
and my shield; my heart trusts in Him and I am helped"
Psalm 28:7.

We'll keep you posted!
With love,
dixiejax

Eliza update 4/13/08

Dear family and friends,

This is not so much an update as a chance to share a little photo retrospective: two years ago this past week, Eliza finally came home with our family. Here are two photos, taken exactly two years apart: one on our front porch that first week, and one today, at the WRAL Azalea Gardens in Raleigh. You'll also find these photos alongside some additional recent photos in Eliza's
online photo album, to which there is a link at the end of this message.

Love,
Daniele for the dixiejax

Eliza's photo album: http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=x603pj9.9cvuroi9&Uy=5tsnjr&Ux=0

Happy Valentine's Day!--turn on your speakers again

Make a free ecard - it's easy!

Highlights from Eliza's birthday--turn on your speakers!

Make a free ecard - it's easy!

Eliza update 1/27/08--anticipating birthday #2!

Dear family and friends,

Tuesday fast approaches, and with it all the mixed
emotions associated with Eliza's birthday: first among
them awe and gratitude that she's with us to celebrate
#2, but not untinged with sadness, exhaustion,
frustration, uncertainty...how do you celebrate this
kind of milestone? No, we're not planning a big bash
like last year; though that day was just about
perfect, trying to recreate it would somehow tarnish
the memory, I think (and maybe kill us in the
process!).

No, for Luke's sake we'll eat cake and give Eliza some
small gifts, and we plan to have a family portrait
taken next weekend to commemorate the day. Otherwise,
it'll be a regular day--Luke and Sam to school, Eliza
doing physical therapy--and we'll hope, like we do
most days, that Eliza will rest/sleep comfortably
through most of it. I'll try (as I have for a year)
and hope to succeed this time (before descending into
a puddle) to read through all of the beautiful pages
you sent for Eliza's first-birthday scrapbook.
There's still room to add second-birthday wishes, if
you'd like to send an 8 1/2" x 11" page! We'll likely
watch last year's birthday slideshow (it's on her
blog: dixiejax.blogspot.com), and maybe I'll get
around to posting the months' worth of photos on my
camera to her photo album
(http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=x603pj9.9cvuroi9&Uy=5tsnjr&Ux=0).
I won't attach them here, as I know their size can
overwhelm some inboxes. Otherwise, it'll be a regular
day. Maybe Eliza will give us the gift of a good
night's sleep...

Meanwhile, speaking of pictures, some of those on my
camera are from Christmas, which was wonderful.
Before we left town, we were once again shocked and
amazed and brought to tears by a visit from the very
same anonymous and extremely generous Santa and elf
who visited last year. This year, though, I took a
photo, which I planned to send to the FBI...until I
read the note accompanying our gifts. "Santa's elves
still desire to operate in secret," so after a year of
doing my best sleuthing (and failing, for the most
part), I'm giving up. It turns out that "Santa"
really does exist, and some of you, no doubt, are His
hands and feet.

Our Christmas visit to Syracuse was wonderfully
uneventful, though Luke would have appreciated a bit
more eventfulness in the area of snowfall...

LUKE: "Let's go play in the snow, Nana!"
NANA: "There really isn't any snow to play in, Luke."
LUKE: (pointing out the window at the leftover few
inches of dirty, icy stuff), "Don't you see that white
stuff out there?!? THAT'S SNOW!"

Poor southern boy...he really has no idea what he's
missing.

Meanwhile, no ER visits, no weekend phone calls from
afar to our beloved NC pediatrician, no stress for the
local pediatricians who are so graciously on call for
us while we're there. And no stomach flu for the rest
of us, which has tarnished every Christmas/New Years
(and some summer visits, too) for the last twelve
years! That felt like a small miracle in itself, for
which we are very grateful. Add to that the luxury
and comfort of our recently-purchased minivan, which
made the packing so much simpler and the twelve-hour
drive ever so much more comfortable, and we could
hardly have asked for more. Thanks for all your
prayers.

As the weight of two years feels especially heavy some
days, even with the "how much longer?" question always
lingering, Santa's words to us in this year's
Christmas letter couldn't have been more appropriate
or timely: "Now we see things imperfectly as in a poor
mirror, but then we will see everything with perfect
clarity. All that I know now is partial and
incomplete, but then I will know everything
completely, just as God knows me now," 1 Corinthians
13:12. Hallelujah.

With love,
Sam, Daniele, Luke, and Eliza