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

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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

Visit with Santa

Make a slideshow - it's easy!

Happy holidays from the Jacksons!

Turn on your speakers and click on the link below...it's worth it!

http://www.elfyourself.com/?id=1354435479

Eliza update 11/28

Dear family and friends,

This Thanksgiving, as I found myself reflecting on the
past year and what I'm thankful for, I was shocked to
think of how far we have come in a year. At this time
last year, we had reached the point of discontinuing
Eliza's nighttime oxygen, the final step in a process
of ending any treatments that were not solely for the
purpose of comfort. At each step in that process last
fall--as we discontinued each seizure medication, each
breathing treatment--we waited for what the doctors
assured us was inevitable, the realization that we had
figured out--and discontinued--just which treatment it
was that had been keeping Eliza alive thus far. Of
course, it wasn't the meds keeping her alive, and
through the past year and especially the past weeks,
we have been reminded again and again that only God
knows what He has planned for His daughter.

Eliza and I had an appointment two weeks ago with a
new doctor, one we hoped might have some insights into
how to keep Eliza comfortable despite increasing
seizure activity and multiplying restless nights.
Instead, this doctor felt very confident--as do we and
our beloved pediatrician, after much conversation and
research--that Eliza does not have the capacity to
suffer. His assessment of her was that she is no
longer conscious, or is so minimally and infrequently
conscious, that she is not aware of (and therefore
doesn't suffer from) sleeplessness, digestive issues,
or any other symptoms that appear to us to be
unbearable, or at least very uncomfortable.

On the surface, this realization is comforting: Eliza
does not suffer. Though she looks exhausted most of
the time, though her stomach fills with air and she
vomits sometimes a dozen times overnight, though she
frequently goes twenty-four hours without sleeping,
Eliza does not suffer. What a relief. Of course, if
Eliza is not aware of discomfort, we must ask the
question, Is she aware of comfort? Does she "know"
us? Does she "like" to be held? Does she "want" to
be snuggled? Medically speaking, with a here-and-now,
body-and-brain perspective, the answer is likely no.

But we know that Eliza is so much more than just a
body and brain. And thank God for that! Even as we
wrestle with how to care for the here-and-now part of
Eliza--the body and brain, which still need basic
maintenance--we face the more difficult question of
how to care for a soul, a soul that is likely more in
the next life than in the current one. The answer is
that we continue to love our daughter, to hold her and
talk to her and treat her as the person that she is,
the person God made her to be, for as long as we have
any part of her with us.

I was struck in church that very same week by a chorus
we sang: "You give and take away/My heart will choose
to say/Blessed be your name." Sometimes it feels like
so much has been taken away from Eliza, from our
family, from Luke as a result of Eliza's struggles.
But how much more has God given us! And now, it feels
as if we have been given another small gift, the
reassurance that Eliza is not in pain, that she is not
suffering, that she is hopefully resting quite
comfortably in her Father's arms even at times when
she can't be--or doesn't know that she is--in ours.
Blessed be His name!

Love,
dixiejax

Eliza update 10/18

Dear friends and family,

Thank you for your continued thoughts, love, and
especially prayers. We have thought about writing an
update many times: sometimes because we've been eager
for your prayers, other times because we know how many
of you are eager to hear news of Eliza. It has been a
busy summer, as you'll read, so there's much to
report.

"'Our God whom we serve is able to deliver us from the
burning fiery furnace...But if not, be it known to
you, O king, that we will not serve your gods or
worship the golden image that you have set up.' Then
Nebuchadnezzar was filled with fury, and the
expression of his face was changed against Shadrach,
Meshach, and Abednego. He ordered the furnace heated
seven times more than it was usually heated." (from
Daniel 3)

Seven times more. Job, also, felt the multiplication
of satan's wrath at the unconditional faithfulness of
a servant. Though we can hardly claim to be as
steadfast as these heroic saints, it has felt at times
over the past several months that satan has been
provoked to higher levels of attack against Eliza and
our family.

Eliza has suffered from mysterious illnesses: fevers
with no apparent cause; sporadic insomnia;
unresponsive excessive gas. A g-tube infection and
resultant treatment-gone-wrong landed her in the
hospital for five days on a "vacation" to Syracuse.
Episodes of status epilepticus--constant seizure
activity--come and go. The struggle to determine
etiology and treatment for these ailments has been
intense at times. With a child like Eliza, any
significant symptom often leads to soul-searching and
head-scratching. "What's wrong?" "Was she doing that
before?" "Could this be fatal?" Eliza is writing her
own medical manual. We are just scribes.

Besides the complications, Eliza continues on her
normal course. She has reached approximately 24
pounds. Her "Aunt" Cortney gave her her first haircut
last weekend--just barely trimming her gorgeous, wavy
strawberry-blonde locks. Eliza receives physical
therapy twice a week. She has no voluntary movement,
but her gentle but persistent therapist has kept her
tendons relatively supple. Eliza receives all of her
nourishment and medication through the g-tube in her
abdomen. The specially-formulated easy-to-digest
absurdly-expensive (but Daniele has bargain-hunted on
ebay and the Eliza Fund reimburses us--thank you!)
swill enters her tummy at a rate of 66 mL/hr from 4pm
to 7am. Under the guidance of Eliza's pediatrician (a
man with illimitable patience with Daniele's incessant
emails and measureless love toward Eliza--hallelujah),
we have reduced Eliza's regular medications to two:
Klonipin, to help her sleep, and Prilosec, an antacid
to help counter the effects of reflux.

Eliza averages one or two seizures per hour. In the
last few weeks, she has begun to have epileptic fits
consisting of seizures every 5 minutes over a couple
hours. If Eliza begins to have seizures at such close
intervals that she does not recover between them, she
enters what is technically known as status
epilepticus. On such occasions (several times in the
last month), we administer Valium rectally, which
allows Eliza to stop seizing and sleep. Eliza's
seizures typically involve eye deviation, tensing of
muscles, arching of back, lip-smacking, vocalization,
and vomiting (when she has something in her stomach).
We are often jumping out of bed several times each
night to tend to her and clean up vomit as necessary.
Although this has become somewhat routine, the sleep
deprivation has taken a toll, especially on Daniele.
We appreciate your love and prayers for her as she
carries so much of the load night and day, physically,
emotionally, and spiritually.

Luke turned 4 on October 5th. He is truly a gift to
our home. He understands that our hope, and Eliza's,
is in Jesus. He sometimes asks: "When are we going to
be with Jesus?" With his exemplary childish faith, he
knows what is better by far. In the meantime, he is
shedding his precious little light in ever-expanding
contexts. He immensely enjoys his Mon-Tues-Wed am
preschool. His brain relentlessly soaks in whatever
comes its way, especially verbally. A typical
exchange today:

Luke: Mama, you should spend more than a hug on me.
Mama: Luke, I'm not sure that makes sense. Do you
know what "spend" means?
Luke: I don't know what it means (pause) but you do.

We wrestle, we tackle, we read, we play sports (can't
get that dang baseball bat out of his hand lately), we
learn Scripture, and we pray. We were asked early on
whether having Luke made caring for Eliza easier or
harder. It is more and more clear what a blessing God
has provided in Luke.

The inevitable question: prognosis? No idea. Doctors
have never really wanted to touch this one. Now we
know why. Neurological catastrophes throw all the
standard tools for understanding and treating a
patient into confusion. We know that Eliza has not
improved. There will not be further medical imaging
to ascertain the status of her brain. A clinical
evaluation demonstrates all that we need to know to
respond to Eliza. She has big, sparkling blue eyes,
but she is blind; she does flinch in response to
light. Her body is perfectly-formed, but she is
totally without movement: involuntary jerks and
muscle-contractions are her only forms of movement.
To all appearances, her delicious ears function
normally.

This is Eliza. For all we know, this will be Eliza
for many moons to come. So much that defines
personhood is altogether alien to our dear Eliza. How
is it then that she has such a powerful presence and
undeniable identity? Perhaps there is a source beyond
her who speaks meaning in her and through her and--it
is my conviction and hope--, in intimate ways, to her.

In the case of Shadrach, Meshach, and Abednego, the
realization of their immediate hope was only minutes
away. They exited the furnace with even hair
unsinged. The examples of Abraham, Jacob, Joseph,
Moses, David, Jeremiah, Peter, even down to the saints
of today, remind us that, just as His ways are not our
ways, His timetable is not our timetable. Their
faith, as ours, is "the assurance of things hoped for,
the conviction of things not seen" (Hebrews 11:1). We
stand on these truths:

"This is the day the LORD has made." (Psalms 118:24)

"All my times are in His hands." (Psalms 31:15)

"For while we were still weak, at the RIGHT TIME
Christ died for the ungodly. For one will scarcely
die for a righteous person--though perhaps for a good
person one would dare even to die--but God shows his
love for us in that while we were still sinners,
Christ died for us." (Romans 5:6-8)

It is enough.

Love,
dixie jax

PS I have added all of Eliza's summer/fall photos to her online album, to which there
is a link on the right.

PPS Eliza is a model! Check out the right sidebar on
http://www.bundleboo.com/thebuzz.htm.

Eliza update 4/24

Dear family and friends,

I've been thinking about writing this email for over
two weeks now, but have had a hard time deciding what
to write. Two weeks ago yesterday (April 9) marked
the one-year anniversary of Eliza's homecoming from
the hospital, which seems an occasion worthy of an
email!

Many of you who don't see Eliza often may wonder what
she is like nowadays; she's certainly very different
from the baby we brought home a year ago. She now
weighs almost 23 pounds, about average for a
fourteen-month-old, and is around 28 inches long, on
the short side for her age. This combination makes
for a pleasantly plump appearance! Her head has not
grown since her shunt was placed last May, which means
it's quite small for her age, but I don't think the
smallness of her head in proportion to her body is yet
very noticeable. Her hair has gotten very long, now
falling in golden ringlets well down her neck in the
back and long enough for a small ponytail on top of
her head! She does not yet have any teeth, though a
few seem poised to break through any day (and have
been so for weeks now). I have attached a recent
picture of Eliza and Luke together; you'll notice
their coloring is very different, which will only be
exaggerated as Luke spends more and more time out in
the NC sun!

The first question most people ask about Eliza is how
frequent her seizures are now. This is a very
difficult question to answer, as the frequency varies
widely. When awake and stimulated, she may seize as
often as every five minutes, averaging closer to every
fifteen. When she's sleeping, Eliza sometimes seems
to pass a couple of hours without seizing, though as
her seizures can be completely silent, we can never be
sure whether or not we have just slept through them.
The severity of her seizures also varies; many involve
loud screaming and vomiting, others are quiet and seem
barely to faze her. The vomiting has definitely
increased recently; some nights she may vomit (as a
result of seizing) as many as ten to fifteen times,
and it's not unusual for her to have trouble clearing
her airway after such an incident. We've been assured
by her neurologist that, unfortunately, vomiting is a
common result of seizures and that there is nothing we
can do about it.

Eliza has just this week overcome her first cold,
which is remarkable in itself, as Luke had had a dozen
colds and half-dozen ear infections at least by her
age! We're grateful that the congestion doesn't seem
to have adversely affected her breathing at all,
though I suppose it remains to be seen if all the
congestion will clear up completely.

Eliza no longer smiles, or rarely does so, at least.
She often seems very tired and keeps a schedule
resembling a newborn's more now than before: sleeping
on and off for varied amounts of time without a
predictable schedule. She does sleep more at night
than during the day, though, which is convenient for
us! Eliza is still fed very slowly, overnight; her
feeding pump delivers special formula directly through
her gastrostomy tube (in her stomach) from 4pm until
7am. She is only on three medications: Klonipin (to
help her sleep) and Reglan and Prilosec (for reflux).
We also have Valium to give her on especially bad
nights when she's unable to sleep due to frequent
seizures; we've only had to use this once thus far.
She still receives physical therapy twice a week for
about an hour each visit, which she tolerates well.

Eliza does not cry and has not done so since last
August. Many people have trouble grasping that fact,
but it's true: she does not cry. In fact, as the
doctors predicted, she does nothing voluntarily and
would rarely, if ever, even move if not for the
seizures. This makes it hard to know how to interact
with her sometimes, though she does still seem to be
most comfortable when she's held, so we do that as
much as possible!

Luke remains a devoted big brother, gentle and kind to
his sister. He explained to Grandma 'Cinda on her
recent visit that if you kiss Eliza while she's having
a seizure, she is less likely to throw up (it does
seem sometimes to help her avoid gagging to comfort
her while she seizes). He's very good at identifying
seizures and particularly those that may cause her to
vomit, which is an especially useful skill when
they're together in the backseat of the car. Eliza
doesn't go with us too many places, usually just
church on Sunday, doctor appointments, and the
occasional family outing. Sam's sister Sylvia is
still living with us, so Eliza often spends quiet time
home alone with Sylvia while we participate in
activities not suited to Eliza's sensitivity to
overstimulation.

By the way, to Santa's elves (whoever you are...and
we're still trying to figure that out!), we remain so
grateful for all the gifts you gave us and which we
are still enjoying. We can't wait for the pool
membership to start next month!

As we lavish whatever love and affection we can muster
on Eliza, we struggle with her inability to respond.
It is not so much that we want a thank you or an "I
love you." The frustration lies more in her inability
to show or say "I know that you love me." With the
gradual disappearance of her smile, let alone the
absence of any speech or voluntary squeeze, Eliza has
no obvious way to express her feelings toward us.

As is Eliza's habit, however, she speaks compellingly
through this weakness. She speaks of a God who goes
to wondrously absurd lengths to convince his creatures
of His love--the immortal dies! And she speaks to
tragic creatures who, unlike Eliza, have speaking
faculties to proclaim Jesus Christ Lord, have all the
physical capability to love and serve in response to
His love, but neither speak nor act. May his extreme
and unending kindness lead to repentance and lives
that clearly affirm: "I know that He loves me."

Love,

dixie jax