Step by Step: A Bittersweet Life
Mothering my younger son, Ian
Christopher, has been a call to let go of a dream, yet
continue to hold a vision. It has presented me a life that
I have come to look upon as bittersweet. I find it
interesting that “bittersweet” is the particular word
that emerges here, since it has always been my favorite
kind of chocolate, both of the opposing qualities being
necessary for its perfection.
His was a beautiful birth in
Takilma Clinic’s birthing room, where he joined me, his
dad Leo, and his 7-year-old brother Ry on a warm summer
morning in 1989. The garden was reaching its peak, and we
planted a redwood tree for each boy in a special family
Life with baby Ian was heaven
until the night of the autumnal equinox, Friday, September
22, when darkness descended on our family. It had been a
hot, sticky, stressful day, and Ry had gone to his dad’s
for the weekend. When I went in to go to bed that evening,
Ian was lying face down in our bed in respiratory
distress. He was breathing erratically and not getting
enough oxygen to sustain life. In those few short moments,
life was forever changed.
What followed has been one
family’s journey, through control into surrender,
through fear and denial into love and acceptance. Leo and
I raced him to our local clinic, thankful that a doctor
was on-call that night. The doctor got the oxygen going,
then phoned for the ambulance, which drove us to
Medford’s Rogue Valley Medical Center.
Since nobody really knew what
had happened to Ian, every possibility was explored by the
hospital personnel. Was he coming onto illness or
infection? Had he been shaken? Was his mom (that would be
me) on drugs? Had he had a near-SIDS (crib death) incident
and been brought back from the jaws of death? Or could it
have been an initial seizure which caused him to not get
Whatever it was, his
heartbeat was strong and his will to live fierce. In the
pediatric intensive care unit, he changed from ours to
not-ours. When Leo and I were forced from his bedside by
the medical team, we were devastated. He was such a little
guy in that great big bed. Struggling with life and death
issues, we clung to each other, wishing there was
something we could do, needing to just take him and go
When Ry arrived to visit the
next afternoon, Ian was just having his first seizure, and
what was beginning to look like his recovery took a big
dive. I remember looking through the window and seeing
Ry’s little face questioning what was happening, but I
couldn’t focus on him. I so longed to console him, yet I
was helpless to do so as I sensed the comfort of the
familiar disappearing from view.
We faced severe brain damage;
kidney failure; a persistent seizure disorder; and the
world or drugs, medical professionals, and unanswerable
questions. On Sunday morning the decision was made to send
him to Portland’s Emanuel Hospital on a Mercy Flight to
either resolve the kidney failure issue or prepare him for
a transplant. After Emanuel’s medical team arrived,
people bustled around the room preparing for the flight to
Portland. Just as we learned there was no room for us on
the medical team’s plane, a friend came in to inform us
that the only flight between Medford and Portland that day
was departing in half an hour. We needed to leave
immediately, before they took Ian from the hospital. Leo
quickly asked everyone to leave the room, that we might
have a few moments alone with our son.
“They’re doing what they
know how to do,” Leo said to me. “Let’s do what we
know how to do.” Holding hands around our boy, we prayed
a prayer of healing, of protection, of longing. We prayed
for a safe journey and for a wise medical team. We held
love in our arms. Then we let him go.
Leaving Ry in Ashland with
his dad and stepmom, we go onto the shuttle for Portland,
our empty arms aching. We prayed again, envisioning
walking out of the hospital with our baby in our arms,
Emanuel resolved the kidney
dilemma right away; then they worked on getting him
stabilized neurologically. The frequent seizures were
frightening to us, and everyone we were counting on for
help spoke a language we didn’t yet know. One doctor
told us of the dead areas in Ian’s brain and that he
would probably be somewhere between a vegetable and a few
years behind his peers. Another doctor, when asked for his
opinion about these “dead” areas, said, “I
wouldn’t call them dead, I would call them affected.”
That helped, because we were desperate for something to
hope for, a vision to hold. We prayed, we sang to him, and
to each other, we asked our friends to hold us in their
hearths, to see us as strong. We began the mental process
of reweaving a brain.
A dilemma we faced at this
time was not knowing what The Plan was for Ian. Was it in
The Plan that he would survive, or would he pass on? How
were we to know what to focus on: the healing? or the
As we walked together one
evening, I said that I wished we could gather in spirit:
Leo, Ian, and myself, to talk this situation over and
clarify our focus. Sitting with Ian that night, I became
aware that I was humming a song over and over. Listening,
I heard: “See me. Feel me. Touch me. Heal me.” So that
was that. Our focus was to be the healing.
Our mothers and Leo’s
sister arrived to wait with us, and we settled in for the
duration of our stay in Portland. After 10 days, Ian was
breathing on his own and the seizures were under control,
so Emanuel transferred him back to Medford and local
support people. Leo’s mom left, my dad arrived to join
in the waiting, and Ry came to visit us regularly.
Leo and I learned infant CPR,
and on the day Ian was discharged, we were given a monitor
that would measure every breath he took. Without a certain
number of measurable breaths per minute, the alarm would
sound to alert us. We left the hospital with our baby, as
we had envisioned, but things had changed. Not only was
Ian far from being a well child, but Ry had been enrolled
in school in Ashland and would not be coming home with us.
I felt that I had lost both of my children at once.
At home, the season had
changed from summer to fall. Our first impression was of
the garden, where the fruits had withered on the vine and
the tree we had planted for Ian had died. As we got out of
the car and went into the house, we realized we had no
clue what to do. No one could tell us what these traumas
would mean to Ian’s development and therefore to all of
our lives. We knew that his vision had been almost totally
lost, and it didn’t take long to realize that he was not
developing normally in other ways.
We struggled to get back to
the lives we had left behind. Ry, my link to a normal
life, continued with school and came home on weekends. I
missed him desperately. Leo helped with Ian and went to
work whenever he could. I became head of our Research
Development and Asker of the Big Questions. If anyone knew
anything that would help a brain heal, I wanted to find
out about it and try it with Ian.
Slowly life came back to us
as we learned how to live with intensity and uncertainty.
Gone were the days of spontaneity, of simple living, of
family outings and pleasures. Gone were the good old days,
when life was just – well, normal.
I read everything I could
find that was written by parents of children with
developmental and physical disabilities, looking for the
key to how they had survived the experience. Had their
marriages endured? What about the impact of traumas like
ours on typically developing siblings? Statistics for
families like mine are grim. I just hoped that love was
big enough to get us through the dark times we were
experiencing and those that were certain to be a part of
I learned to meditate and
studied writings that uplifted my spirit. But reality
lurked in our home, and anything I chose to do to help
myself was soon defeated by the endless needs of little
Ian. Days turned into weeks, then into years, and we
gained experience. Looking for a way through the maze, we
learned that medical professionals didn’t have much to
offer. It was a “you’ll have to wait and see how he
develops” approach. We had the feeling that we’d
better do something NOW so that the brain could maximize
Open to trying every healing
modality we could find, we took him to medical doctors,
herbalists, neurologists, chiropractors, osteopaths,
homeopaths, psychics, native Shamans, Ayurvedic
practitioners, channelers, naturopaths, even a guy who
worked with a pendulum. We patterned him and did therapy
for hours a day, calling on our local community for help.
As friends and family emerged to join hands with us during
our extended time of need, we learned that the true
meaning of “community” is Common Unity.
We were introduced to “the
system” and dealt with “professionals” who said to
us “What Do You Need?” How were we supposed to know
what we needed? We just wanted our regular lives back. I
went over the edge in those early years, hoping beyond
hope that there was someplace to land and that there were
real answers for an Ian.
Does it have to be true, just
because most people believe it, that healing is not
possible for Ian’s brain? Are those areas dead or are
they just affected? What exactly is his potential? How far
can he go?
He has gone farther than
people would have thought possible at the beginning, so
perhaps our efforts will not be in vain. I know by now
that if my goal is that he become a lawyer or school
teacher, I will be disappointed. But if he could learn to
communicate and to think, if he could maximize his
potential, then all would be, indeed, possible.
If he can’t, then have I
failed? Has my time, my energy, my love, my life been
wasted? Is his failure to heal a reflection of some
failure in me? I used to think about that a lot, but by
now I’ve pretty much shifted to a place of surrender and
acceptance for What Is. My mottos for life are:
“It Is What It Is”;
“Here we are … another moment”;
Ry finished elementary school
in Ashland, finally moving home again for middle school
and high school, easing that part of my burden. As the
years went by, the impact of the brain injury revealed its
fullness. Ian continues to require round-the-clock care by
an ever-vigilant staff. People sometimes wonder aloud if
we haven’t done enough, if we shouldn’t start focusing
on ourselves instead of the child. Knowing that these
comments come from a place of love and concern helps, but
this is our beloved son. This is what we have been given
in life. What else could we possibly be doing that could
be more important?
In my experience, when I stop
and say, “now wait a minute here, this isn’t what I
had in mind for my life” or, “excuse me, but I have
other very important things to do,” that is when the
depression holds on for dear life as I spiral downwards
out of control. I’ve witnessed both Leo and myself
pushing beyond exhaustion day after day, for years.
Learning that it was essential to stop, look around me,
listen to the day, and to get out of myself for even a
moment, was a big step up. It was not until I accepted
that fact that we had been given more than a family could
do, that I started to get a grip and forgive myself.
It took 9 long years for me
to be able to answer that famous question, “What Do You
Need?” Now I know what I need, and it all has to do with
my ability to survive the experience: Inner peace, not
matter what the circumstance. Courage to face each day.
Vision to see the whole picture. Wisdom to be able to make
right choices. Serenity to accept what life ahs given me.
Love – how could any of this continue for a moment
without the fuel of love?
And most essential, I need a
living, breathing Connection to the One who brought me
here, to that which I call God. As we celebrate Ian’s 10th
birthday and my 50th (!!!) this summer of 1999,
I look back and give thanks for all we have been able to
accomplish; that despite the incredible shakedown of our
family, we have hung in there together, loving each other.
Even though we face incredible educational challenges and
unknown medical and behavioral difficulties, I choose to
look into the future with curiosity and hope. What Ian’s
future will hold for him feels like a much bigger question
than what my future holds for me. What will happen for him
when he is bigger and stronger than us, when we are no
longer able or willing to be available full time? Who will
emerge to love and care for him when we are too old to do
so, when we are gone? Where will he live? Is there a place
for him here in his own community, where he can live and
make his contribution? Or shall we set him up in some
other place, closer perhaps to services but away from the
loving support of home? Can I trust that love will be
present for him no matter where he is? Will others be able
to find the human being within the disabilities?
These unanswerable questions
come to haunt me in the middle of the night sometimes, but
generally life is a Be Here Now kind of experience.
As Ian is a present moment
kind of guy, so has my life become about this moment, this
hour or two, this day. It’s like there is no
future-tripping with him, because who he is going to be in
five years – or 10 – is beyond my wildest imagination.
It is a “NOWHERE” kind of life, and I must choose,
step by step, if I’ll see that as NO WHERE or NOW HERE.
At least that much is up to me.
c. 1999, by Mar