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.
