Dear family and friends,
It's been a while since we've sent an email, even
longer since we've responded to so many of your
emails. It's hard to find time even to turn on the
computer, much less get around to emailing these days.
Every time we talk to someone on the phone, see
someone, receive an email, we're asked the same
questions: How is Eliza doing? How are you doing?
How's Luke? Are you getting some rest? Is there
anything we can do? Our instinct is to give the easy
answers: Eliza's doing okay; we're hanging in there;
Luke's a trooper; we get a fair amount of sleep;
really, we don't need anything right now, thanks. But
the honest answers are a little harder to give (and
receive, I imagine), especially in person.
How is Eliza doing? About as expected. The vomiting
has decreased, though not ceased completely, since we
changed her feeding and medication schedules. She is
now fed continuously for twenty hours a day; this
prevents her stomach, which appears to empty very
slowly, from becoming over-full. We still don't know
why her stomach empties so slowly, but she is
scheduled for a gastric emptying test on Monday, May
15. We certainly hope to have a better answer then,
for her sake and for ours. Meanwhile, she has begun
to gain weight again now that she's not vomiting as
much. So that's the good news. On the flipside,
Eliza's seizures have continued to increase. Her
worst day recently was Friday, when she suffered at
least one seizure per hour. Of course, we want to
know why. Is this because all her vomiting has
lowered the level of phenobarbitol, her
antinconvulsant medication, in her blood? (Her level
will be checked Monday afternoon). Is it because her
brain is continuing to degenerate? If so, what does
that mean? It's hard, if not impossible, to know,
harder still NOT to know.
How are we doing? It's hard to explain. I often feel
sort of divided. Day to day, we spend our time trying
to improve Eliza's quality of life: deal with her
vomiting, try to keep her comfortable, work on
swallowing, stretch her muscles to keep her from
getting stiff. All of that can feel very productive
in the short term, and things like sorting out what's
wrong with her stomach could certainly be satisfying
small victories. But there's this nagging, lingering
sense that these are only short-ranging fixes; we
still don't know what's wrong with her brain or how to
stop it. So there are other times--for example, when
Eliza shrieks through her entire physical therapy
session or throws up every time her speech and
occupational therapists work on her swallowing--when
these things feel useless and even detrimental; why
torture her with thumb splints when she'll never use
her thumbs anyhow? Why force her to work on head
control when she'll never hold her head up? Why talk
to her and sing to her when she does not likely
receive any comfort from these things and can't
respond with even a smile? Why hold her when, if
anything, that seems to upset her even more and might
make her vomit? As parents, these are agonizing
questions to ask ourselves. Are we waiting for her to
die or hoping for her to live? Some days it's hard to
know. Certainly, her life as it is doesn't seem like
one we'd want for ourselves, and given that she's made
no progress developmentally in the month she's been
home, it's hard to hold out hope that her life will
improve significantly, if at all.
How's Luke? He's a two-and-a-half-year-old with a new
sibling. He knows she's sick and he knows we're
stressed, but he loves Eliza and only wants to kiss
her, hold her hand, bring her toys, and make her feel
better. Yes, he acts out occasionally (though never
against her), just like any toddler with a new sibling
would. But he continues to impress us with his gentle
spirit and good nature. (He's also gaining ground in
his biblical knowledge. There was a small setback
yesterday when he thought Moses should strike the
Israelites in the forehead with his staff, apparently
incorporating elements of David's remarkable conquest
of Goliath, which is his favorite story).
Are we getting any rest? Some, yes. Eliza usually
falls asleep between 11pm and midnight, so,
theoretically, we should be able to get at least six
hours before Luke gets up and Sam heads to school.
But even sound asleep, Eliza doesn't always rest
quietly; she wakes up to have a seizure, she screams
out in her sleep, she sets off her oxygen alarm. So
those theoretical six hours are diminished a bit and
are always interrupted. So yes, we're tired. Sam has
to get up and go to work; we have to have energy to
play Thomas trains and run around the backyard and
fight toddler eating battles and work on potty
training...not to mention care for an often
inconsolable baby. Yes, we're tired and stretched to
our limit.
Is there anything you can do? You have all done so
much for us already. The meals you've provided, your
care for Luke, the flowers and gifts you've sent, your
financial contributions, and most importantly, your
prayers, have sustained us over the longest three and
half months of our lives. We are more grateful than
we could ever express, and we're so thankful for your
continued offers of help. At this point, really,
there isn't anything we can think of that we need, and
we've learned not to be afraid to ask when we do need
help.
Finally, the heart of the matter: it is hard to endure
under this suffering, to keep going as mother, father,
friend, teacher--all while carrying Eliza's heavy
emotional weight. And, hardest of all, we have felt
at times like God is absent. The Holy Spirit opened a
passage in a profound way to help us understand this.
In Philippians 3, Paul speaks of "being conformed to"
(taking the shape of) Christ's death. The hardest
part of Jesus' suffering and death was his separation
from God the Father. Should it surprise us, then,
that our experience of suffering should not include
some sense of God's absence from us? David laments in
Psalm 69, "I am weary with my crying out; my throat is
parched. My eyes grow dim with waiting for my God."
He, too, wondered at God's apparent disappearance.
The glorious truth, however, is this. Though we may
feel that God is not present, though he may allow us
to feel that for a season, the promise of life in
Christ is that we will never be forsaken. David
continues in Psalm 69, "At an acceptable time, O God,
in the abundance of your steadfast love, answer me in
your faithfulness." As David did not, we have seen
the answer in King David's greater son. Yeshua: The
LORD Saves. And yet, the waiting continues for the
time spoken of in Revelation 21: "He will wipe away
every tear from their eyes, and death shall be no
more, neither shall there be mourning nor crying nor
pain anymore."
Even as you pray for us in our suffering, we pray for
you. May every symptom of your broken humanity be
transformed into a reminder of what awaits all those
who respond to the Spirit's call to repent and accept
the love of God in Jesus Christ.
Love,
Dixie Jax
