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
