We have now been home from Cincinnati for over a month,
living in our home now four roughly two weeks after tremendous effort from our
church family to make it hospitable to small human life. The landing back into life here was a bit
rough, as is sorting out life with twin infants on top of it all, but we have
been, no matter how petty my attitude might become for a moment, tremendously
blessed. I suppose I could write a book
over the three dimensional aspect of our experience with TTTS and the other
complications which seized our affairs in February and never let go. The things I heard in it, thought through it,
convictions and questions. I have been
unpacking all that material, I continue to unpack it and it continues to
convict and mold me as I listen to it then and today as if it were all in one
moment. But our days must march on. For indeed they are full. The list of things that need doing here at
the house is monumentally large, and, for a spell, disheartening. I even grew a bit angry by the grip this
house and its expansion and renovation has laid on my life at a time when there
is so much of more import to concentrate on.
I have eased back into work and really started to catch my stride and my
wind of late, and that has been refreshing, though at times caused conflict as
I seek to concentrate through the maze of complications life continues to toss
our way.
It has not helped any emotional adaption to current reality
that our aunt Martha has been so gripped by illness of late. Every emotion I could throw at the topic I
have tried, just to arrive back to where everything must get to in the end if I
am to find some measure of peace about it: acceptance. Acceptance.
What more can I say. It is not my
place to presently unpack on that issue.
She remains a heroic, radiant light of a love for us all, even in
moments that she can hardly speak from her pain she can manage to crack a smile
or show some grace. She has many friends
from all over. She has gathered them
well in her places: Dickyville, Tate, Home and so on. Folks from all walks and bents. She expressed a wish that she would still
find some light to flicker out of her in the hope of her first love in Christ as
she walks through this present fire, and I for one have not seen it dim. This, and our own immediate adventures with
our boys has posed some serious questions in how I pray. But more on that in a moment.
Concerning our boys.
They are growing like weeds. Even
Bryce is now fed solely from the breast, no more fart making supplements for
him (though he can still clear a room).
Both are strong, though River has been seemingly herculean for some time
as they can perform bodily feats we are not accustomed to seeing in kids their
age. They fuss, eat, sleep, poop and
sometimes, when you are holding them, flaunt about aimlessly with big open
eyes. There’s not a lot of mutual
interaction at this point, my least favorite stage: the least interactive stage
of life, but all systems seem to be in good order. However, and that’s what prompted this
missive. There is seemingly always a
however in this case.
We returned to Cincinnati at the end of July for River’s 8
week post-op checkup. Dr. Dickie, our
colo/rectal specialist has a dual concentration in vascular disorders as
well. Odd that. River was born with a defect we had not
forseen: an imperforated anus. He was
born in the only place where the Pena procedure, or Pena pull-through as an
immediate surgical correction was pioneered.
Had he been born elsewhere, he would have been given a colostomy bag and
sent home. As it were, he was operated
on second day and all his machinery was connected, an anus was formed, and we
were sent home when he was discharged, with Nicole having to dilate that opening
in increasing succession twice a day for the past two months. Yet, as “fate” would have it, our Dr. Dickey,
a Pena protégé, happens to have an eye and expertise in a what seems to be
another complication and it may have been one we might not have known of had we
not been connected to her by his no-bottom birth defect. We thought the mark on his forehead, on
Bryce’s as well, was an angel kiss, a birthmark, that like Eden’s, fades in
time only to be revealed when they are crying or angry. The doctors here thought nothing of their
marks, but Dr. Dickey showed some concern that his mark may be a Vascular
Malformation, or, a port wine stain – something much more impacting than a
birth mark. However, she also initially
expressed concern not only because of the intensity of the discoloration, but
the size, placement, and reaching for his eyes.
Evidently, vascular malformations around the eyes often times point to
possible complications with blood pressure in the eyes: ie, glaucoma. So, we have been ordered to have their eyes
checked and possibly medicated should signs of heightened pressure
present. However, the proximity of the
malformations to the eyes are not the extent of the potential complications,
but this remains very much in the unknown.
These particular capillary malformations can be associated with lesions
of the brain (and eye), called Sturge-Weber Syndrome and can lead to
neurological developmental impairment, seizures, because the meninges (covering
around the brain) may also be affected.
In severe cases, paralysis can set in on one side of the body and severe
retardation may be resultant. While not
all kids who have capillary malformations on the forehead and eyelids have the
congenital condition of Sturge-Weber Syndrome, these malformations are
associated with this condition and the symptoms of this condition can vary
greatly from mild to severe. What this
means is, beyond the eye checkup, we are recommended to seek an MRI of the
brain to determine if they may in fact have this syndrome or if the
malformation is strictly more superficial.
If, as we obviously hope, it is superficial only, the boys will both
need to undergo an uncomfortable a pulsed-dye laser treatment several times to
potentially destroy the damaging blood vessels without damaging the skin thus
preventing the boys from developing the dark purple staining which can even
raise from normal skin level as it hardens in time if left untreated. So it appears, at the least, we have a bit
more to road to how medically speaking, even in the best case scenario as we
will need to seek laser treatment from a skilled treatment surgeon in this
field, and frequently have their eyes checked for glaucoma. We do still have the dysplastic tricuspid to
deal with in Bryce’s heart, and, our team in Cincinnati may advocate an open heart
to attempt repair of the valve as early as 10 months old depending upon how
much regurgitation his echo’s continue to read.
His latest did not detect any lessening of the leak post second
coarchtation repair, but it could still improve enough in time to push
intervention even further back.
This brings me to the topic of prayer. How do I pray. Honestly, I just don’t know. And I can’t pretend to tell you how to
approach the topic concerning intervention for others is concerned either. I feel less comfortable asking for a specific
outcome these days as I feel that is too impositional and self-centered. Besides, we do not know the why. We do not know what is good for us, good for
all, good for the overall plan, we only know what we want and what we don’t
want, but if we have lived long enough, we know what we want may be that which
hurts us in the end, and what we don’t want, ie, hurt, may be that which helps
us in the end. So what do I pray? I certainly do not want to see my boys
suffer. I am certainly deeply pained to
see Martha, Freda, Patty, suffer. So I
guess I have to pray that good would be done, and that whatever that is, we
would, I would be given the eyes to see it, the good, even though it may look
terribly bad at the time. There was a
reason our plans were taken from us this year.
A reason I had to spend months at the RMH in Cincy away from our fam,
six weeks with Nicole in the hospital.
It wasn’t for kicks and giggles and it wasn’t so I could taste Ohio ice
cream. I hate that Martha’s illness does
cause her to suffer. Yes, it has really angered me. But that may be in the plan and no amount of
pleading may change that. I cannot see
any good that could come of it off-hand, or is coming from it, and then I can
when I pray that my heart is only open.
Open to hear. Still enough to
see. Because often I can’t. Often I have cotton in my ears, blinders over
my eyes, and mucus around my heart. So
right now, my prayer for my own life is one of acceptance. That I will accept what ever it is I am dealt
today. That I will accept whatever it is
I am dealt tomorrow. But that is about
me. That is still selfish in
nature. Still essentially
self-centered. So How do I pray for
River, Bryce, Martha, Freda? Do I pray
for exact outcomes? Sometimes I do. I really do, even though I am never sure
about it, I am there for the asking. Or
do I pray that God would be glorified, come what may? Surely I do.
Surely He will. So why even pray
it? Is that prayer not an act of worship
and submission meant to open us to the broader reality that God has to share
with us? None-the-less, I do ask for
prayer, whatever way, whatever type, whatever silent worship you feel led to
enter into, for our beautiful Martha, and our two little boys, my dad, and all
those so closely connected to them, each and every one.
