One
Dies, One Survives, Pt.
II
Several months ago, I had an odd week here at KotaPress. In various ways, for various reasons, I came into contact with four different families who had experienced the birth of twins where one of the children died and one lived. The "coincidence" struck me as odd. In my 4+ years of doing outreach work I had only come in contact with one or two families that whole time. Now, in one week, four families. In trying to figure out how to best help everyone involved and offer further outreach to readers who might also find themselves in this sort of bereaved situation, I asked the families if we might do interviews with them. They all graciously agreed.
What follows is Part II of my Q & A with these families. This month we are talking with Susan Erickson, a bereaved grandmother, who was kind enough to share her tender heart with us after the death of her grandson Ryan Shane.
Kara: First, please feel free to share the particular circumstance of your loss. I know that some of you had one twin stillborn and one live; others had both born premature and one died very soon after birth. So if you want to first share your story specifically...
Susan: I am the grandmother of our group. At Christmas 2001 while my husband and I were visiting them, my daughter and her husband announced they were expecting fraternal twins to be born in June. While we were still there she had a loss of amniotic fluid from one sac and was put on bed rest. I made a short trip home to fulfill a commitment and then returned to help care for her and her family. The pregnancy was difficult for my daughter. There was the stress of wondering if infection would set in. She developed a painful leg that disturbed her sleep. There was the confinement and discomfort of being bed ridden and numerous medical visits and tests to determine the status of the baby with low amniotic fluid. Early in March, at about 26 weeks, her doctor admitted her to the hospital as a precautionary measure. The monitoring showed the babies were doing well although the one twin had very low amniotic fluid. The day before the doctor was going to release her to come home she went into labor and the babies were delivered by emergency Cesarean section. The twins weighed a little over 2 pounds each. Ryan Shane, the twin in the low amniotic fluid, lived only 5 hours. Quinn, the surviving twin, was in the neonatal intensive care unit for four months and had the types of problems premature infants do. He now weighs 22 pounds, walked at about one year, climbs with abandon, eats well and has been healthy since coming home from the hospital. At this time he is showing no developmental problems.
Kara:
It has struck me that the
grief journey of a parent
where one twin died and
the other survived, is a
very unique situation. Yet
in the past week, I've had
random, totally unrelated
contacts with four families
with just this situation.
Have you met others along
the way with the same circumstance?
Or have you felt a bit alone
in these aspects of your
loss?
Susan:
I have not personally met
any grandparents who have
lost one grandchild, but
I did make contact, through
AGAST (The Alliance of Grandparents
A Support in Tragedy), with
a grandmother who was a
support person for twin
loss. I get their newsletter,
too.
Kara:
In my advocacy work, I really
try to promote that we are
parents even after our children
die -- albeit a "different
kind of parent" in
grief. For you, there was
a double parenthood -- all
the "normal" sleep
deprived, overwhelming,
newborn parenting and then
also the parenthood in grief.
How did you get through
those early days? What kind
of support did you have
around you?
Susan:
I stayed with my daughter’s
family from January through
April. We did have support
of neighbors and friends
and family. Family was geographically
distant so that meant most
of the support fell on my
shoulders. I did feel some
resentment and disbelief
that I was the only grandparent
in the trenches. Their three
year old was a great comfort
since he was full of life
and love. When I returned
home in April I was exhausted.
I saw a counselor. My husband
took care of me like someone
recovering from an extended
illness. In July when Quinn
was released from the hospital
I returned for a month so
I could finally hold him.
.
Kara:
Did you feel you had
time for BOTH children --
the surviving newborn and
for grieving the twin who
died?
Susan:
It was not until I returned
home that I truly made time
for grieving Ryan Shane’s
death. I am a poet, but
was unable to write much
for some time. One of the
things that was helpful
to me was to present some
books to the public library
in my daughter’s community
in Ryan’s name. I
considered Ryan a hero because
he survived until his twin
was old enough to survive
and because he got his mother
to the hospital where she
and his brother could get
specialized care. So, I
found books with children
as heroes. I continue to
add to that collection as
I become aware of such books.
Kara:
Was there anything exceptional
that the "professionals"
around you did to help your
family at the time of birth/stillbirth
and/or since then? If so,
could you tell us a little
about that?
Susan:
We did feel especially close
to one of the nurses who
had herself lost a son later
in life. She told us to
grieve in our own way and
our own time. She helped
care for Quinn in the NICU
and helped us stay positive
through those scary days
and all the ups and downs
that are a part of a preemies
life.
Kara:
Was there anything particularly
unhelpful that people did?
If so, could you tell us
about that?
Susan:
While I know people are
sometimes unsure of what
to say. the hardest thing
for me was when people did
not acknowledge Ryan’s
death and the sadness around
it. But, you know, have
probably done the same thing.
Hopefully I can be more
compassionate in the future.
Kara:
I know that the "firsts"
of everything are always
difficult after a child
has died. But you all had
a unique situation in which
you were also experiencing
the "firsts" with
the living twin. Can you
tell us a little about what
the first birthday, first
winter, first spring thaw,
etc have been like for you
in terms of the balance
between life and death,
grief and healing?
Susan:
My original plan for the
first birthday was to light
an early morning candle
in Ryan’s name, but
I did not do that. Maybe
that will happen on birthday
number two. We had a quiet
family celebration for Quinn’s
birthday which he thoroughly
enjoyed. I feel Ryan’s
death has made our love
and enjoyment of Quinn more
intense. While he was in
the NICU the doctors came
up with what I called the
“disease for the day”
of possible problems for
him. Luckily he did not
listen to them! He is a
very determined child and
I am awed with his unique
personality.
Kara:
If you are past the first
year mark, can you say anything
about the longer-term? Birthdays,
memorials, just the everyday
things that might come up
in your family or questions
from the surviving twin?
Or from other siblings?
Susan:
I will just follow the lead
of Ryan’s mom and
dad as to how they want
to handle the future. When
people ask me how many grandchildren
I have I always include
Ryan. And, I talk to Ryan
on a regular basis to let
him know he is loved.
Kara: If there is another family out there who is dealing with grief under this same kind of circumstance, and if they are feeling very alone, what might you want to tell them or share with them?
Susan: The one book that was so helpful to me was Finding Hope When a Child Dies by Sukie Miller. It helped me adopt the point of view that Ryan’s death is something I will not “get over,” but is a kind of unasked-for-initiation into a deeper experience and knowledge of the world. And that I will continue to incorporate the pain as part of my knowledge and continue to include him in my life.
And I would add that supporting one another through such a difficult time is an act of highest courage and love.
.
About
the Interviewer:
Kevin Smith fan, zine creator,
bookmaker, movie watcher,
dreamer, tool of the peace
movement, sometimes grumpy,
would rather just write
and never edit or publish
again (but can't seem to
extract herself from it!),
sometimes inspired, always
awed by the beautiful minds
of people like Nash, advocate
for bereaved parents everywhere,
creator of the long forgotten
Iowa GRRL, and so much more.
If you have questions or
comments, send email to
editor@kotapress.com
