Although this is a long story it is a story worth reading. ~ Helen
~
Sometimes Things Go Wrong.
In early August of 1996 my father-in-law, Jack was diagnosed with terminal
brain cancer. It was a shock, in that we expected to be told he had suffered
a small stroke. My husband, Dave, and I already had one child, a son named
for his Daddy who would turn two in September and we were going to start
trying for our next child after his birthday. Because Jack's cancer was
stage four he was given 6 - 9 months to live, we decided at that time
to start a month earlier in the hope he might be able to see the child.
God blessed us and in September we had a positive pregnancy test. My first
pregnancy had been "text book perfect" and we had no concern
that this one would be any different.
As often happens when a much loved family member is terminal it brought
out the best and the worst in a family. All I could do to help raise Jack's
spirits was to make sure he got to see little Davey almost everyday no
matter how tired or busy I was. I could see in Jack's eyes the anger,
sadness and frustration of being dealt such a blow, this disease was taking
from him what he loved the most. I won't go into the details but the things
that were said and done robbed him of the small joys still available and
that is inexcusable. Because my mother-in-law, Diane, has agoraphobia
I often ran errands for them, I didn't mind, it was a minor effort that
helped them in a small way.
My due date was May 5th and we didn't know if we were having a boy or
a girl but my pregnancy seemed to be progressing nicely except for headaches
which we attributed to stress from the family conflicts that were occurring
at that time. My obstetricians office would alternate visits between the
two midwives and the doctor so you would be comfortable with all of them.
During the visit with Dr. B-, who had delivered my son, I told her of
how when I would get angry about these conflicts I would get an odd pain
in my abdomen and I was concerned this might be harming the baby, she
then gave me the best possible advice "Don't let yourself get angry,
obviously this person doesn't care whether or not you lose this baby."
I tried my best after that not to let my temper get the best of me.
Easter was coming and Jack's favourite dinner was turkey with all the
fixings. We decided to have the dinner at our home since we only lived
across the street from David's Mom and Dad, so if Jack felt up to it they
could join us for dinner or if he was too tired we could run over freshly
cut portions that wouldn't need to be reheated. I even planned on making
strawberry shortcake from scratch which was Jack's favourite dessert.
In the week prior my ankles started to swell (a common side effect of
pregnancy) and I figured it was due to all the running around I was doing
for the holiday. My Mom and my brother's wife, Cindy, offered to help
but I cheerfully declined telling them all they needed to do was show
up (my sister-in-law had miscarried her first child and was newly pregnant
I didn't want her to do anything more than enjoy a good meal).
At the next appointment I told the midwife of the swelling and she too
believed it was from running around too much and told me to stay off my
feet for an hour at least three times a day, a real funny statement considering
I had a two year old at home with me. The night before Easter after I
had finished the most of the preparation I looked down at my ankles and
was alarmed to see my ankles and feet extremely swollen (like my grandmother's
when she had gout). I called my mother when elevation didn't make the
swelling go down and she urged me to call the number at the hospital since
swelling and headaches were in the criteria to call immediately. The doctor
on duty questioned me thoroughly and ascertained this was my second pregnancy
with no complications on my first. He told me to stay off my feet, that
Easter would come without me running myself ragged and should my headaches
worsen to come right in. After feeling foolish I called Mom back and told
her what he said; she gave me the "better to be safe than sorry"
speech and told me she'd see tomorrow. All went well on Easter Sunday,
Jack was too tired to come over, but he loved the dinner and dessert (David's
Mom said it was the most she had seen him eat in a long time).
Now at some point I started to have a feeling of dread about my pregnancy,
I just had a feeling that I wasn't going to survive the birth. I didn't
share what I felt with anyone, we all had so much to worry about at the
time, and I chalked it up to pregnancy hormones, but this feeling of doom
stayed with me, like a little black cloud it followed me everywhere, I
prayed to God that this feeling wouldn't come to reality, and if it did
to please take care of my children.
On April 1st we got a freak snow storm and I became nervous when I saw
the person who plowed my husband's uncle's gas station next door had packed
the snow behind my husbands car so high and hard that it would take hours
before it or my car would be free. My husband reminded me that he could
use his parents car across the street if we had an emergency, but I got
angry at the out and out meanness of the gesture. The person that had
done it knew I was very pregnant, and we had a small child in the home
(which anyone who has a child knows (this person had two) you never know
when you'll be taking an unexpected trip to the emergency room). The day
after a very kind friend of the family, who has a large backhoe, dug my
husbands car out of the then iced-packed snow, he just gave us a wave
and smile and went on his way.
We attended the first of two childbirth refresher classes, and my husband
couldn't do anything right by me that night, he would rub too hard or
too soft, his jokes were dumb, I even accused him of trying to irritate
me on purpose. I was a witch by the time the class let out. When the class
was over we picked up our son at my Mom's house and I went on a tirade
about how the instructor seemed more interested in discussing "aroma
therapy" than in discussing the protocol changes, or what would happen
if things went wrong. I believe the instructor told us she would address
those issues in our next class. My husband gloated about how he had told
me these classes were a waste of time, I just glared at him and remembered
Dr. B-'s advice not to get angry.
I was due to see the Dr. B- on April 10th the same day the wrestler Rick
Flair would be signing autographs in a mall near our area. Because this
wrestler was among Jack's favourites, and is my husband's and son's favourites
I set it up with my mother to go with me after my appointment so she could
watch little Davey while I waited in line. We agreed to this on Monday
the 7th, on Tuesday I shot with my dart team as usual although I was getting
much more tired lately and left the match early (something I rarely did),
and there were good natured jokes about how I delivered my son after shooting
at the same place years earlier. On Wednesday the 9th I brought my son
over to see Grampy and Grammy who had some close friends over for a visit,
but shortly after my husband showed up there after work, I told him I
was going home to put my feet up and for him to bring Davey home when
he was ready. I felt even more out of sorts than usual, tense without
any reason. When I got home I felt completely drained and put my feet
up on the couch but it didn't help relieve me. I talked to my sister-in-law
Cindy on the phone until David came home.
That evening when Davey was in bed I asked my husband to go get me a
pizza from a special place the next town over, he was happy to go, thinking
perhaps it might help my ill temper. He brought the pizza straight home
and it was still cold by the time he arrived. My rage broke when he brought
me a butter knife to cut the cold cheese with. I started yelling that
a steak knife would have been a smarter choice, he tried to keep his temper
in check while attempting to cut through the cheese (he was exhausted
from getting up in the middle of the night to help Jack get off the floor
when he would fall out of bed, his mother tried calling David's brother
on some of these occasions but he and his wife turned the ringer off on
their phone because John needed his sleep), when I returned with a sharp
knife he had just cut away the first piece and he started to hand it to
me. I screamed how dare he assume to know which piece I wanted without
asking me first. Then his anger broke, and we argued about of all stupid
things, cold pizza.
The sickening headache began as I warmed a piece in the microwave, and
after taking one bite I knew I couldn't eat the pizza without being sick.
I got a horrible pain in my abdomen, not a contraction because it didn't
end, but it was the same pain I had had earlier in the pregnancy when
I got really angry except this was so much worse! My husband thought I
was going for the sympathy vote and grudgingly brought me a glass of water
while he glared at me from the kitchen. I laid on the couch trying to
drink the water, praying for either pain to end, and fighting nausea.
When I requested a bucket to vomit in he knew I wasn't faking it, and
asked if he should call the hospital. I told him you have to wait an hour
while drinking the water to see if the pain would end, it didn't, it only
ebbed slightly before it began to get worse. After I threw up I told him
to call. He called and the nurse wanted to speak with me after he told
her the symptoms, she inquired about the type of pain it was, I told her
as best I could, my head was throbbing to the point I could barely speak
in a normal volume. She told me to come in, that I sounded as though I
was in alot of pain (that was an understatement). We called my mother
to come watch our son and I tried to get dressed again.
By the time she arrived I couldn't stand up straight, and I remember
her hands on my face and her kiss on my cheek before I walked out the
door doubled over in pain. They both thought I was in premature labour,
so her look was worried but not beyond the realm of "I hope she has
an easy labour". The five minute ride to the hospital seemed to take
an eternity, I couldn't stand the seat belt on my stomach, my husband
trying to gage my mood said "I love you honey" in a sickeningly
sweet way hoping I would snap at him, when all I did was grab his hand
and say "I love you too." he began to get worried. Inspite of
the street lights it looked like we were travelling in a tunnel. The seatbelt
was agony across my abdomen and I told him make sure they give me an epidural
as soon as I get there, he started wisecracks about how I wanted to try
it naturally this time. I was in too much pain to take the bait. By the
time we reached the hospital I was in agony, and I remember thinking it
can't get much worse than this, oh was I wrong.
The reception staff at the emergency entrance of Brockton Hospital were
so kind, and nice. I was bent over at the hips, my face buried in my husbands
shirt to shield my eyes from the stabbing light, turning my head to speak
only when my husband couldn't decipher what I said (he has nerve deafness
in his ears) in answer to their questions. On one such turn I saw two
adolescent girls walking from the waiting area over to where we were,
a curiously fascinated look on their faces as they stared at me. They
stopped about 6 feet away and stood staring at me. The reception staff
seeing this came out from behind their enclosed area and made a human
wall between me and them while another went to get a wheelchair for me
until Maternity arrived with theirs. I sat in the chair and the light
was unbearable, I don't know if I was crying at this point but I know
I felt like it. The maternity nurse arrived promptly and told us she had
expected us sooner, my husband explained we had to wait for my Mom. I
was moved to the new wheelchair and handed a small emesis basin in case
I felt sick again. All the time the pains in my head and abdomen were
getting worse, I felt like either one could split open at any moment.
I threw up again coming out of the elevator and the nurse had to hold
my shoulders back when I wretched forward out of the wheelchair. I began
to hope they would just knock me out. I was quickly changed and placed
in the Early Labour Lounge, the baby monitor strapped to my belly, contraction
belt strapped on and IV inserted into my hand. I could barely take not
having my hand over my eyes for the IV. My husband was in the room but
he tried to keep quiet and out of the way so they could do their jobs.
The doctor on call came in and I moved my hand long enough to get a quick
peek at him. He had white hair and a gentle yet authoritative voice (gentle
with me, authoritative with the nurses). He told me he would be quick
about what he had to do so he could turn the lights down for me. I answered
his questions and he gave his orders after examining me. The doctor then
told David and I that our baby would be born that night. I nodded, the
midwife had told me at the last visit that if I went into labour the baby
was big enough that they wouldn't stop it.
(READER: At this point I am no longer able to remember chronological
order of thoughts or memories) I remember the nurse saying you're not
having contractions as she stared at the monitor, I asked what was wrong
then? She told me they were going to find out. The doctor asked which
hurt worse, my head or my belly, I told him my head. It was the worst
pain humanly imaginable. I think I told them to please make it stop hurting,
and things are unclear after that. I remember thinking people pass out
from extreme pain and if God was kind I would do so soon. They told me
they were giving me something to help the pain. I fell into a blackness
after that, with odd thoughts entering my mind, like I should have gone
to church on Good Friday to do the Twelve Stations of the Cross, maybe
if I joined a prayer group the pain would end (mind you I'm Catholic but
non-practising), that it was October all of a sudden and while I was sure
the doctor was competent, I wished Dr. B- was there, that maybe she would
know what was wrong (neither my husband nor I were told what was wrong).
Some point later I remember someone asking me if I was still in pain
I told them yes (I began to worry they would think I'm a drug addict looking
for a high) my headache blotted out every other pain. I couldn't feel
any pain in my abdomen. Blackness came to me again, I heard the voice
of someone telling me when I gave birth I would feel much better, so I
tried to push. I was informed they tried to give me an epidural but were
unable to accomplish this. My husband had gone home to tell the grandparents
what was going on and to get my personal things. He still believed everything
was normal, just premature labour. When he walked off the elevator he
could hear me screaming in extreme pain down the hall, back in the room
he saw them roll me back onto my back, I opened my legs and pushed, he
told the nurses he could see the head and they told me to hold it in,
not to push, to wait for the doctor. That's when, according to my husband,
all hell broke loose, the room was full of equipment and people, there
were nurses who were watching only the monitors, the doctor was delivering
the baby, and I was issuing bloodcurdling screams.
What I remember of the birth is screaming from the horrendous agony in
my head in a black hole or tunnel making my scream echo, certain my head
was literally going to split in two, and pushing. The closest I can come
to describing the pain was it was so intense I never even felt the labour
pains or my child entering the world, just my skull trying to split apart.
Wishing I was dead rather than feeling that agony. The world had become
nothing but black pain, and then it just became blackness with no thought
at all as I slipped into a coma. That was how my sweet Sarah came into
the world on the morning of April 10th 1997. I was Medflighted shortly
thereafter to Massachusetts General Hospital by Dr. B-, who came in on
rounds shortly after her birth and took over on my case, in order to save
my life as I was dying at the time.
My daughter was born at 6:30 am, 4 lbs. 14 oz., at 36.5 weeks and healthy
by all appearances. She was the only happy thing about that morning and
she was moved immediately to the Level II nursery to be seen by the neonatologist.
I have no memory of her on that morning, no memory of being among the
first to welcome this beautiful new life into the world, a condition called
Severe Pre-eclampsia complicated by H.E.L.L.P. Syndrome robbed me of that
and as I was to find out many other memories and abilities as well.
Pre-eclampsia (formerly known as Toxemia) is a rare condition of pregnancy,
which is one of the leading causes of maternal and new-born fatalities
(because labour is induced to "cure" the condition the child
is often born premature and a lack of development (1. because of gestational
age and 2. because infants born of this condition are usually underdeveloped
compared to normal babies) causes the baby's death). The some signs of
this condition are headaches, swelling of the face and extremities, protein
in the urine, high blood pressure (mine was 210/110 upon entering the
hospital) and irritability. They don't know what causes it, but some studies
suggest the way the placenta attaches to the uterine wall is a factor,
but the results are swelling of the brain, dangerously high blood pressure
and swelling of the liver to mention a few, but the condition usually
resolves itself after the delivery of the placenta (magnesium sulphate
is the normal drug of choice for therapy). Some of the dangers to the
mother are stroke, haemorrhaging of the liver, brain damage and death.
The babies are in danger from lack of oxygen from the mother and prematurity,
the doctors try to delay delivery for as long as possible to give the
baby the best chance of survival without compromising the mother's life.
H.E.L.L.P. Syndrome is Hemolytic Anemia, Elevated Liver Transaminases,
Low Platelet Count (my red blood cell count went from 235,000 to 35,000
in a very short period of time) which in layman's terms means the body
is attacking itself. Like Pre-eclampsia they don't know what causes it,
but they feel a delay in treatment of Pre-eclampsia might be related.
David was still unaware of what was going on, suddenly he heard Dr. O-
say "I can't get it, I can't get it out" referring to the placenta,
the nurses told my husband "Mr. West, why don't you go see your daughter?"
he didn't move "Mr. West, go say hello to your new baby girl."
They finally got him to go to the nursery, after about ten minutes he
was paged to the nurses station, he came out into the hall and saw me
lying on a stretcher, pale and unmoving next to the desk, when my regular
OB saw him she brought him into an empty room. When he saw them pushing
me down the hall he turned to ask why? Before he could Dr. B- calmly but
urgently apprised him of my precarious situation, she explained the condition
and it's potential results if I wasn't medflighted immediately, he asked
if he could go in the helicopter with me, he was told "No there's
only enough room for the flight crew and medical personnel who need to
be taking care of her." He tried to lie and say he didn't know how
to get to Mass General, they gave him a detailed map and he left the hospital
trying to figure out how to explain to our families what had just happened.
He told my mother first, her reaction was silent shock, how could this
happen? How could I die when there were now two beautiful children waiting
for their mother? David went across the street dreading telling his parents
who had already been through so much, Jack and Diane were devastated,
I had always been the strong one and now I might die? This was so unexpected.
They were in tears, first the cancer now this. Jack remembered one of
our conversations on the way to Chemo at Mass General about how he felt
bad that I was taking him there, I told him that if it were me he'd do
same and his reply was "That's different", now I was in need
and he couldn't do anything to help me, being chairbound. Diane called
David's Uncle Chet at the gas station to please go and get little Davey
so my Mom would be able to go into the hospital to find out how I was
doing. Mom called my sister-in-law Cindy back to ask her for a ride into
Mass General, while waiting for Cindy outside she saw a helicopter go
overhead and wondered if I was in it, the day had taken on nightmare proportions.
Some family friends who were there the day before came to stay with Jack
so Diane could go to an MRI appointment and to see Sarah, Diane walked
into our family physicians office and by her expression they thought Jack
had passed away, when Dr. H- came in he was blindsided by the news, the
doctor from their practice that was covering the hospital hadn't informed
him of what had happened, he left her to find out what was going on, he
came back and told her the grave news, that I had the worst form of this
condition, but I was a fighter and I had that going for me.
Diane and her friend went to Brockton Hospital to see Sarah. David hadn't
told the nurses who was allowed to see the baby yet so at first all she
could do was look at her, then he called to tell them the family list
and they could finally let her hold her. I was told by Diane almost all
the nurses were in tears and her friend who drove her was crying and of
course she was as well, here was this new-born who might not have a mother
to hold her, as word spread around town people who hadn't seen us in years
began stopping by their house to find out my condition. The outpouring
of emotion from people when I learned of it was overwhelming, these kind
people who barely knew me were praying, crying and offering their assistance
in anyway they could help. I got a large vote for town meeting member
while in the hospital from the snow delayed election which was unusual
because the "W's" are at the end of the ballot. Family and friends
had three priest praying for my health, including Father Crowley who had
married us. The nurse who had taught the childbirth class on my first
pregnancy (who also happened to have gone to High School with my husband)
saw the chart for West, Ruth and looked at it wondering if it was me,
she was shocked at what lay therein, and called David offering her help,
encouragement and kind concern.
Although David left ahead of Mom and Cindy, Cindy, who had worked downtown
for 17 years beat him in there. At first they couldn't tell them where
I was, I wasn't listed as a patient, finally they found my room on the
maternity floor and I was there until they took me for a Cat Scan, but
when I didn't return they discovered I had been transferred to Neurology.
There in the N.I.C.U. waiting room they waited even longer, seeing my
room at the end of the hallway. David stood staring down the hall until
a male nurse closed the wing's doors in his face. Finally the doctors
came in, when David asked if I would die the doctor would only say that
I was very sick and that the next 48 hours were crucial. My husband went
home after seeing Sarah and cried and prayed. He said our wind chimes
sounded so different from normal and the life size portrait of the three
of us that a friend had made seemed to fill our living-room. He was terrified
that I would die and blamed himself, that maybe if he had helped me more
I wouldn't be at death's door right now. When the phone rang that night
he was certain they would tell him I was dead. They only allowed him and
my family in for five minutes after hours of waiting. It was the hospital,
but they were telling him I needed to have a D&C to remove the rest
of the placenta, he gave permission, and that they might have to put a
shunt in my skull to relieve the pressure on the brain. His next hours
were spent praying, crying and pleading with God that I would live. When
morning came after that endless night of praying and bargaining he knew
I would live, his faith in God carrying him through.
They came to the hospital the next day and I was on a breathing machine
and had many IV tubes running in me. They had to perform the D&C in
the I.C.U. because I wasn't able to be moved and my mother heard several
shocked nurses say "The first time I've seen something like that!"
My face and body was swelling and I looked horrible, the decision was
made not to allow my son in to see me like that, he stayed in the waiting
room with my family and tried to follow a blond nurse calling "Mommy,
Mommy?" after her.
Cerebral consciousness for me would surface and pass, one of my first
thoughts was my head doesn't hurt anymore, and there was a kind woman
in nurses whites looking down at me. She was telling me what they were
doing to me, an MRI but when I looked towards my feet what I saw looked
like something out of a Japanese sci-fi movie but her gentle voice kept
me calm and made me feel better. She always seemed to be there whenever
I was conscious, she told me her name was Noel. She was gentle and kind
and very soothing. Sometimes I would see what I thought was the outside
of the hospital and a giant forklift moving the rooms around and I thought
how nice, that way everyone gets the good view. My room became an elevator
and Noel was with me and when the doors opened there was a man there in
orderly whites who looked at me and said "She doesn't belong here."
and Noel smiling widely as the doors closed again she told me I was going
to get better but I had to rest. Then I was alone when a voice told me
my family was waiting to see me, I waited a long time wondering how they
would find my room since it was always moving, and one time when the doors
opened there were about 8 people in white coats just looking at me from
the doorway. I didn't understand why my family wasn't there yet. Someone
asked how many brothers and sisters I had, I answered three brothers,
the voice asked about my sister - I explained I had a half sister I had
never met and a half brother I hadn't seen in years. Then I thought I
must be dreaming, all the odd things I had been seeing weren't reality,
and if I wanted to see my family all I had to do was sit up and go find
them. When I tried medical alarms started sounding and the ceiling started
to fall towards the bed, people were rushing into the room, I was terrified,
I knew I had done something I wasn't supposed to and now I was in serious
trouble, I called for Noel all I heard was her voice telling me I would
be all right but I had to rest and that she couldn't stay anymore. When
later asked by my family if I remembered any of the nurses I answered
Noel, and described her, they all looked at each other, there had never
been anyone by that description or name that worked on me according to
them I now believe she was my Guardian Angel watching over me until I
was better. A nurse in the room flipped a switch on a machine and the
ceiling was suddenly back were it belonged. She spoke to me about my family
as she got me ready to see them, I was so weak I couldn't even lift my
head and they had to do all my personal hygiene even brushing my teeth
for me, they were so kind and gentle as they cared for me I will never
forget how much a caring touch can do for the human spirit.
At some point I remember looking through the windows to the nurses station,
I saw a large group of young doctors in white coats conferring over a
chart, occasionally one would look my way. I remember thinking "Gee
someone must be really sick to need that many doctors, thank God it's
not me", imagine my horror when they all walked into my room. I figured
I had been sick, but not that sick. I figured the painkillers had left
me in weakened state that would resolve itself as the drugs left my system.
Dr. M- introduced himself and the other doctors, and asked if I had any
pain. I told him no, he seemed surprised by this answer. He asked if I
knew where I was, I looked out the window and guessed Boston (I knew from
the view I wasn't in suburbia anymore). He nodded and asked which hospital,
I didn't know, he informed me Mass General. He asked if I knew what day
it was, I figured it had to be Thursday since I went to Brockton hospital
on Wednesday night and answered that, he shook his head and answered No
it's Sunday. My stomach hit the floor, I had lost three days! He asked
if I knew the date, I couldn't tell him quickly and I was trying to look
at the calendar across the room but I didn't have my glasses on, so he
told me. I was so taken back by losing three days I barely heard what
he said. He explained he would be asking me those same questions everyday
and that more doctors would be in to see me later on.
My husband was there first, his tired face greeting me as he tried to
hold my right hand (there were IVs and wrappings around the IV sites)
he told me that I had been very sick, but I should just rest and let my
body do what it needed to do. I asked him if I was going to die, I was
so weak I could barely manage the words, he told me no. I then told him
all the B--- S--- that had been going on with his brother's selfish and
his wife's cruel behaviour doesn't mean anything now, that it was now
made insignificant from where I was lying. He quickly agreed and promised
that he wouldn't allow their head games to upset him or our home anymore.
He gave me a blurry Polaroid of my baby, he told me the baby was a girl
and healthy, that her paediatrician Dr. K- called him every morning with
a progress report. I asked what her name was, he told me he was waiting
until I could tell him what name I wanted (that was his bargaining chip,
he figured I wouldn't let myself die if our daughter didn't have a name),
Sarah Ann I replied. Then he was going, so that my Mom and brother Jim
could come in. The nurse taped Sarah's picture to my bedrail so I could
just turn my head and see her, with what strength I had left I wished
I could hold her and told the picture I was sorry I wasn't there to do
so, my child so tiny and alone many miles away in another hospital never
having felt her mother hold her close to her heart.
I fell into a state of sleep, but during it I felt I was lying in the
hand of God, that I was loved and protected by the great hand which held
my whole body in His palm. All would be well and I would live to hold
her for the first time and to hold my son again.
When I opened my eyes again Mom and Jimmy were there, I've never seen
them look so worried. They talked about holding Sarah, that she was beautiful
and healthy, that my brother Warren and his wife Missy had come from out
of state the day before to see me. That I had scared Johnny (my brother
closest in age and temperament) to death because when he had bent to kiss
my forehead, my body (though paralysed for the breathing tube) tried to
sit up, he thought I was in the throes of death right then because I shouldn't
have been able to move (his wife Cindy was there with him and witnessed
this and we can now smile about this event because of how composed he
normally is) he literally ran out of the room. Very shortly they told
me they would also be leaving, I shook my head (it was easier than talking)
and managed a weak "no" (I didn't understand why everyone kept
leaving so soon). My Mom told me I had to rest, "You have to get
your strength back so you can hold that beautiful baby." I couldn't
argue with that.
Soon after Johnny and Cindy came in, I wanted to tell them something
very important about what David and I had decided so they would hear it
from me, but they wouldn't let me talk. Instead they too told me about
my sweet Sarah, I felt like my heart was breaking, this little baby was
so far from me and while I was grateful that she had so many loving arms
ready to hold her, all I wanted was to hold her desperately. Was someone
telling her and my son that I wanted to be with them but I couldn't right
now? That Mommy didn't have a choice right now? That I would do whatever
was necessary to get out of the hospital and back to them as soon as possible?
They also left after only a short visit telling me I needed my rest. I
didn't understand why everyone kept leaving so soon. Why didn't anyone
bring me flowers (I didn't know you couldn't have them in ICU) or cards?
Later a very nice doctor came in and introduced himself as the obstetrician
who took care of me at Mass General. He told me that Dr. B- sent me to
Mass General by Medflight to save me and she called him everyday to find
out how I was doing. I told him "She's a wonderful doctor I'd trust
her with my life, well actually I did and ..." my hands gesturing
and a small smile came on my face. He asked if I had been told what had
happened, I told him my husband said Toxemia, he nodded and used the proper
term and asked if I knew anything about the condition. I said "Isn't
that what the lady on E.R. [the TV show] died of?". He explained
the differences between the character's condition and mine. He asked what
I remembered of the birth and I told him screaming in my head, in a black
hole, I asked if he knew if I had screamed for real, he replied in the
affirmative, I felt bad, I told him I hoped no first time Mommies To Be
were in earshot because I was screaming from the pain in my head, not
labour pains. He smiled at this, but I was serious, I have a big beef
with people who needlessly scare pregnant women. He was very patient explaining
things to me and was very kind.
Sometime later another doctor entered, he was older than all the others
and had a very pleasant accent. He projected a large presence, he knew
what he was doing and I knew this was the doctor who would say when I
could go home. I also noticed the nurses stepped a little quicker for
him, he had me do light physical tests for neurological damage and seemed
very pleased with the results. He asked if the other doctors had explained
what had happened to me, I answered him and after explaining his part
of it he was soon on his way. I asked one of the nurses if he was the
"big cheese" and she answered "Oh yes". I slept some
more and one of the nurses (I think it was Maura) woke me to tell me I
had a visitor, and did I recognise her? I turned my head and saw it was
Sue, David's Uncle Chet's close friend and I smiled and said "Hi
Sue" and she looked so happy (I knew she had gone through nursing
school but I didn't know she was working at Mass General) she jokingly
told me how I had scared everyone and that she too was checking on me
for the family (my husband is not the best at informing due to his hearing).
She told me to rest that she would be back to visit again later (again
I thought why does everyone keep leaving so soon?).
Later I asked Maura (she had the most soothing Irish accent) if I was
N.P.O. (it means nothing by mouth) my mouth was so dry. She said yes I
was, that I had a feeding tube down my nose and throat, and was surprised
I knew the term. There was my first goal, get the N.G. tube out, they
wouldn't release me if I was on a feeding tube. Getting the tubes out
are how I measured my progress, at one point my family counted 16 I.V.'s
in my arms and a central line in my chest. I was taken off the breathing
machine when they were able to control my brain swelling.
My husband was informed that I probably would be in Mass General for
two weeks and then a rehabilitation facility indefinitely so I could relearn
how to do everything and he would need to make long-term arrangements
for the care of my children when Sarah would be released from Brockton
Hospital. He refused to believe that I wouldn't be able to care for my
children, the grandmothers had already thought of this possibility and
each was trying in their own way to tell David what might need to be done
and what they could do to help. No one told me of these conversations
so each day I asked when would I be released, always receiving the "We'll
see" answer.
I remember waking up late at night, looking out the window at the dark
city, wondering if Sarah was crying in that darkness, if someone would
pick her up and soothe her with the tenderness and love that I would.
Panic would start to wash over me, knowing that my situation was controlled
by these doctors. Were they aware of how badly I needed to be with my
children? What was my son thinking? What had they told him? How could
I make them understand how much it hurts not to hold your children, to
be afraid one of them doesn't know you at all and the other might be thinking
I just abandoned him. To be forced to listen as others tell you about
you own children, as these well meaning family members tell you they had
made the decision to keep your daughter in the other hospital and not
to allow your son in to see you "like this". Not having a mirror
handy, assuming they meant the numerous monitor wires and IV lines, not
knowing the fact that your whole body had swelled and you looked (as they
would tell you later) terrible, horrible, unrecognisable, the worst thing
they had ever seen. These thoughts and questions echoing in your mind
as you stare at the night reflections in the polarised window of the building
across the way. The silence of the unit broken by the quiet hum as the
"balloons" on your legs inflated, giving you a physical reminder
of how far you have to go. Maura entered with my medication and was surprised
when I turned my head toward her as she injected it into my IV's, I was
grateful for the human company to distract me from my terrified thoughts.
We had a small conversation before she had to attend her other patients,
but it would relieve the desperate isolation I felt and I would be able
to sleep again.
These late night thoughts solidified my resolve to get out of there to
my daughter and son, each small step they had me take, such as sitting
up in a chair for the first time, I took on with determination to the
point they had to constantly tell me to slow down and not to rush things.
I didn't wait for them to suggest eating, I asked when could I try. The
nurses were happy at this question from me (the last time they had put
my "food" in the N.G. tube I could feel the coolness inside
the tube going down and I said "Umm yummy" as a joke) and once
my gag reflex was checked I was allowed to try fluids, then applesauce,
when I was able to hold this down they brought me other "easy"
foods. I remember how slow my hands moved, that it was difficult trying
to get food on the spoon, bring it to my mouth and feed myself, part of
me wanted to cry but I told myself that it was OK to take it one step
at a time, don't cry because that wouldn't get me out any sooner. I had
no appetite but I knew if I wanted to get my strength back I had to eat,
besides the nurses were watching my appetite and when one morning I only
pecked at my tray they noticed and asked why? I thought up some answer
for them not wanting to set myself back in the psychological department
when I was making progress in the physical area. Being allowed to brush
my own teeth was a happy morning for me, these things seem small to healthy
people but when you've haven't been able to do any of your own hygiene
and had to submit to someone else doing all of it for you, these small
markers on the road of recovery become bill boards. But I must stress
the truly caring attitudes of these care givers, I will always remember
how gently a nurse held my head so she could comb my hair and pull it
back into a pretty ponytail. Like a sick child my head was so weak I could
barely hold it steady against her chest as she combed.
My Mom brought in pictures taken the day before of everyone holding Sarah,
and she had accidentally double exposed the Easter Sunday roll of film
so Davey's picture was in the background of most of the photos like someone
had done it on purpose. My desire to get out was worsened by those pictures,
my daughter wouldn't know me when I finally got to hold her. She was so
extremely small and as her mother I should be there to tell her I love
her, to comfort her when she cried, to feed her, to love her. My mother
gently pointed out that even if we were in the same hospital the multiple
IV's and Central Line would have prevented me from holding her (it was
this reason they still decided against bringing Davey in to see me, there
were too many lines he could have unknowingly pulled out).
The days after that brought different therapists and tests and soon they
had moved me to one of the Intermediate ICU rooms (I was happy to see
this one had a bathroom even if I did have to call a nurse everytime I
wanted to use it and a telephone, most people in NICU are unable to use
either), still not receiving an answer about when I would be released
I made my own goal, by that coming Monday - Marathon Monday (the Boston
Marathon) I would be out of there and home I told myself. My progress
surprised them, and while I was still quite slow on the physical level,
I was walking, and when they gave me the opportunity to take care of my
own hygiene I was overjoyed, that morning I discovered what a wonderful
feeling it is just to be able to wash yourself. I was in there so long
the nurse asked if I was all right, I told her yes I'm just enjoying doing
this for myself. When I did the cognitive testing I knew I blew it on
a few of the tests, and when Johnny came to visit me I told him I knew
I hadn't done too well and the tester talking to me like I was a 5 year
old got me angry. I talked about how my dart shooting skill was gone,
I had tried to bring my hand up with an imaginary dart and I couldn't
even remember how to hold it. He gave me a matter-of-fact look and told
me "You'll get out of here, you'll practice, you'll get it back,
you're still an Assassin (the dart team we're on)". I loved him for
that statement, there was no pity or sympathy in it, he was speaking to
me as he always had. My brother John came to visit me everyday after work,
he said it was because he worked out of South Boston, but I think he would
have been there everyday no matter where he worked. When I said as much
to him he just smiled and looked away.
My speech, memory, balance and co-ordination had been affected by the
illness, I used to be called dictionary by friends because of all the
large words I knew and used, now my speech was slow and simple, I would
frequently stop mid-sentence and forget what I was saying. I used to be
the one to remember everything that had been said and done, now I was
hard pressed to remember what day it was. But if I had stopped to dwell
on these shortcomings I wouldn't have been able to concentrate on getting
out of there, I just told myself it's the way it is for now but I'll get
better each day. Cindy & Mom came everyday, and each day I saw a little
less worry in their eyes, I didn't have a going home outfit for Sarah
and my Mom went out and bought a beautiful pink outfit with a matching
bonnet, it was left with me in the hospital hung on the rail next to her
picture. I'd lay there at night stroking the picture and outfit mentally
telling my kids that I loved them and I was doing everything I could to
get home.
When they moved me to the main neurology floor I was allowed to be taken
outside for some air by Cindy and Mom. The April air was a little brisk
and my Mom gave me her jacket to put over my Johnny. I remember how incredible
it felt to feel fresh air run over my face, like a gently caress and I
closed my eyes as they pushed my wheelchair and I savoured the moment.
As we talked they looked uncomfortable about something and I asked what
it was. They replied that they had found a medical definition of Pre-eclampsia
but were unsure whether or not to show it to me at that point. I told
them I wanted to see it, it was only a few column inches in length and
told only the basic facts about it but it caught my attention when it
mentioned "in rare cases coma or death", well I had had the
coma, how close had I come to dying? I then seriously considered asking
them to help me sneak to their car in the garage and take me to see Sarah
right there and now, no one was watching me and I would come back right
after. I knew this was just a fantasy, and it would only prolong my stay
if I did (not to mention put my delicate balance of blood pressure medications
so out of whack I'd have been in big trouble), but I had to indulge the
thought, knowing full well they'd never agree to it. Then they started
to tell me about friends reactions, how my oldest brothers best friend,
George, was in tears in the street when Jimmy told him the original news
and that his Mom, Mrs. Davis, had called Mom with what I now held in my
hand and that she too would be praying for my recovery.
Because I worked so diligently at coming back to health they released
me on April 17, the Thursday before Marathon Monday to home (no Rehab!!!!).
I had to have my blood pressure checked by a visiting nurse and an occupational
therapist came in to help me learn how to navigate my home and I had to
sleep on the couch downstairs because my lack of balance made our upstairs
a very dangerous journey for me. I readily agreed to these conditions
and grew impatient waiting for my orders to come down to the floor. My
husband and I were allowed to go outside as we waited, and I think we
made about five trips up and down. As we would sit under the budding trees
I asked how his Dad was holding up, feeling terrible for having caused
him so much worry. David gave me a sugar coated version, minimising his
description of their reactions.
We drove straight to Brockton Hospital so I could hold and see Sarah
for the first time. In the car I told my husband, I feel like I just broke
out of jail, I'm Free!!! I looked at Brockton Hospital as we walked up
to the doors, fear hit me but my desire to see Sarah was much stronger
and we went up to the Maternity floor, my husband holding my arm and hand
in his because I was very slow and unsteady on my feet (he offered to
get me a wheelchair, I declined).
Passing the nurses station they all looked at us curious and one of them
asked how "Mrs. West" was doing, I looked at him wondering who
else's hand he held walking past them. He told them to "ask her she's
right here." For a moment there was stunned silence, then they made
happy sounds came out with huge smiles and hugs for me and wonderful words
about Sarah. One of them held my hands in hers telling me how she was
one of the nurses working on me the night Sarah was born and how worried
they had all been for me and then she saw the inside of my arms (my husband
brought me a short sleeve shirt to wear home) which were black from my
hands up to biceps with bruises from the IV's and she told me how sorry
she was for all I had been through, tears welling up in her eyes. I thanked
her, my mind being unable to process all the emotion and activity around
me, it's all I could manage. Then we moved towards the nursery my fears
of Sarah not knowing me resurfacing, again the reception I received by
the nurses was overwhelming (in the good caring sense). My brain felt
like a circuit breaker had been tripped and it wasn't completing the circuit.
I could only manage one or two word answers besides thanking them, I had
always been verbally eloquent, now I was unable to express how truly thankful
I was to these wonderful people for caring so much about me and taking
loving care of my daughter. I didn't want them to think I didn't appreciate
all that they had done for her and tried to do for me but my words failed
me.
They helped me wash my hands before holding Sarah, they sat me in one
of rocking chairs and explained the lines coming out of the baby's blanket
were for monitoring her heartbeat only, that she was doing great. That
she had eaten a little while ago but she might want more. As they placed
her in my arms they talked about her progress but I didn't hear them I
was mesmerised by the beautiful angel I held, a bit of blond fuzz peeking
out from under the cap she wore. She stirred, opened her eyes, looked
at me, content by what she saw closed them again for a bit then she decided
she wanted more formula. My heart sank as the nurses had to tell me what
my own child wanted, I was her mother I should know. As I fed her I whispered
all the promises I had told her picture to her, I apologised for not being
there for her and promised not to leave her like that again, to try to
be a good mother to her. She was unimpressed and after feeding and snuggling
she went back to sleep allowing me to closely inspect her beautiful face
and one hand that had broke free of the blanket, it was so thin - no pudginess
and dimples - it reminded me of my mothers hands, long, thin and elegant.
All too soon I had to leave her again in the care of the nursing staff,
I wanted to see our pediatrician whose offices are next to the hospital
to hear from his mouth the exact status of our Sarah.
The few steps up to his building took careful manoeuvring even with David's
arm to steady me. Upon entering his office I saw a new receptionist and
I walked up to her in the room full of parents and children. When she
looked in my direction I managed to say my name, and somehow managed to
convey that I wanted to see Dr. K- about my daughter who was in the hospital.
She looked at me oddly (a look I would become quite familiar with from
strangers) because what came out sounded like someone who barely knew
how to speak coherently and it was obvious that my hair hadn't been washed
in over a week, but she got up to go speak with the doctor. His wife,
who runs the office, overheard me and immediately knew my name, came over
to tell me how happy she was to see me out of the hospital, again all
I could manage was a weak thank you. Dr. K- came out as soon as I had
managed those words, his face was beaming with joy, he told me about Sarah,
that she was well developed for her gestational age and didn't need some
of the extensive care that other infants in her position might, and while
her weight had dropped to 4lbs 6oz it was now climbing back up now, he
then asked when would I like to bring her home? Tomorrow? All I could
get out was "My brain don't work so good" I wanted to cry. Was
this the best I could manage when I had so many things to ask about her,
about the care entailed in a premature infant? Why couldn't I get the
words from my head to my mouth? He spoke to save me further embarrassment
and said "Saturday?" I smiled and nodded my heartbreaking at
his intuitive kindness. He and his wife smiled back, he told me he would
call tomorrow with Sarah's status. I thanked them, when I started to turn
I could see my husband grinning from ear to ear at them just happy to
have me alive and standing next to him. When I completed turning around
I saw the stare some of the mothers were giving me before they quickly
averted their eyes, it was the "I don't want the strange person to
know I was staring" look and they were embarrassed that I had seen.
I took my husband's arm again and tried to walk out with as much dignity
as I could muster.
Our next stop was David's parents house, Davey was there and I wanted
Jack and Diane to be able to see I was "on the mend". His progression
of cancer had made it impossible for them to visit me in the hospital.
When we got out of the car I could see the guys at Uncle Chet's gas station
working, it felt good to see something normal again and I returned their
waves. As we entered their house I could hear my son playing, a more wonderful
sound there never was, and he merely looked up at me smiled and went back
to his play. I kissed Jack and Diane and she started filling me in on
Davey's activities from when I was in the hospital and finished with how
she was sure I was going to die. I went to pick up Davey and found I was
too weak to lift my son even while seated, so I had to content myself
with hugging and kissing Davey who was more interested in his toys on
the floor. The seriousness became thick when I took off my jacket and
they both spotted my bruised arms. Jack's face contorted when he saw them
remembering his bruises from the IV's and Chemo he had had. Diane went
on about how terrible the situation was initially (which it was) but I
felt the need to break the mood so when she stated again that I should
have died, I stayed silent for a moment, Jack was watching me intently
for my reaction, afraid his wife had put her foot in her mouth and that
I would be upset, I looked up at him and said with a smile "Naw,
I'm too mean to die." and he got a belly laugh out of it, Diane was
telling Jack to knock it off, stop laughing it wasn't funny (by this time
David was laughing and making ad lib remarks about me dying) and the three
of us were laughing and Diane was trying to keep a straight face saying
the motherly things about respect and so on but I could tell she was a
little more relaxed, that my wisecrack hit the mark it sought, I had showed
them I was indeed going to get better.
There were prescriptions I needed for the blood pressure medications,
so I started to write my address, it was slow and frustrating to have
to consciously think about how to make each of the letters and numbers,
the first took a long time, David offered to do it for me, I told him
no - I have to do it for me, the next took a little less time and the
third was even less. I realised OK I just have to refamiliarize myself
with all this stuff, but I can still do it and each time it will take
a little less time to do. He asked what I wanted to eat, knowing he wasn't
a great cook I suggested frozen Chicken Kiev and frozen twice baked potatoes
with canned peas. That night I took my first shower since I had gotten
sick, it felt wonderful but about an hour after the shower I realised
I hadn't washed the conditioner out of my hair. How could I forget something
so basic? I was embarrassed and rinsed it in the sink without telling
David (who was asleep in his recliner).
On Friday the VNA (Visiting Nurse Association) sent the nurse and occupational
therapist to my home. They were friendly and kind, and the nurse told
me that she would also be able to check Sarah when she came home. The
types of questions they asked would of have seemed ridiculous two weeks
earlier, "Who dressed me?" I looked at her, I had and told her
so, could she see me walk across the floor, I obliged albeit slowly, she
told me she would co-ordinate the speech/language therapist to come, I
asked what that person would help me to do? She answered things like how
to write checks, shopping lists etc., I told her I had already had to
do that since I came home the night before (my husband didn't send out
any of the bills while I had been in the hospital) and from where I was
I didn't think it was necessary, but I told her if you think I should
have it I'll do it. She agreed that it appeared I didn't really need it,
that I only needed to get back up to speed on things. But it was understood
that if I changed my mind later it would be available to me. Mom took
me to see Sarah immediately after, walking into the nursery I saw a strange
man holding and feeding Sarah, my heart jumped! Who was this person holding
my baby? The nurse saw me and said "Here's Mom" and explained
that he was a volunteer who help the premature babies by holding, feeding
and giving a loving touch when they wake up and the parents aren't there
to do it. I think Mom could sense I was afraid of Sarah's reaction to
me and gently pushed me to be the first to hold her when I told her she
could.
On Saturday I was up early, knowing today I would bring Sarah home. Dr.
K- called and told me I sounded better (each day my speech improved),
that my visiting nurse would also check Sarah and that her weight was
now 4lbs 12 oz and she probably wouldn't have been released until she
reached that weight. A nurse in the level II nursery asked if I had been
given my post-partum instructions from Mass General, I said no (I had
been in Neuro, not Maternity) so this wonderful nurse took the time to
carefully go over the instructions for my care as well as the baby's.
When I went to dress Sarah I went blank, I couldn't remember how to put
her one piece tee shirt that snaps between the legs on. I quietly asked
the nurse to please tell me how I should do it, without a moments hesitation
she showed me how without embarrassing me.
We brought Sarah over to Jack and Diane's placed her on the kitchen table
in the car seat and I looked at Jack and said "So what do you think
of her?" his finger pulled down her blanket a bit and said "Well
... she's all right, I think we'll keep her." this comment from him
spoke volumes. Coming from him it was a high compliment, and he dubbed
her princess, her daintiness and blond fuzz and peaches and cream face
making her look like a tiny princess in a fairy tale.
When we arrived home I saw Mr. Kerr (the gentleman who had dug out our
cars after the storm) coming up our street in his backhoe, I proudly held
up the removable car seat so he could see our beautiful daughter. He stopped
and opened the door, he then said something which brought home how much
peopled cared that I had been ill, he told me he was going to send me
blessed roses while in the hospital but I was only in a room that could
have flowers for 1 day before getting released. David told me later that
it's a very high compliment as this is symbolic of the Holy Mother Mary's
blessings.
The full attention of everyone was scary, I've always been a private
person, and the thought of all these nice people taking time to care and
follow my progress (from a respectful distance) was overwhelming (it restored
my faith in humanity which had been damaged by hurtful actions to Jack).
My mother was like a fretful mother hen, ready to take on anyone (including
my husband) who tried to ask me to do anything for them, she wanted me
to be able to focus on getting "myself" back. So when David
didn't get up with Sarah when she would wake up at night (he slept in
the recliner) inspite of my calling across the room to him he begged me
not to tell anyone. My sister-in-law Cindy, brought over cooked roasts
with fixing's so I wouldn't have to cook.
The visiting nurse and occupational therapist came to my home to check
on Sarah and I. It felt odd to walk so slowly, to need to grab onto something
to look in one of my cabinets, to look at the stairs that led up to the
bedrooms and be told they were off limits for now
(I slept on the couch with Sarah's bassinet next to me). And even odder
to have someone watching you do these things and recording your process.
On my first night home I remember all I wanted to take was a shower. I
took it but my husband was at the door calling to me every few minutes
to make sure I was ok.. That evening I told him all I wanted was for everything
to return to normal, to go back the way it was. That, however, was an
impossible request, I was now looked at by family and friends as a patient,
someone who had to be looked after and cared for. Being an independent
person by nature, usually the one who took care of others I was now placed
in a position where I still had to allow others to help me. Except my
husband who would tell everyone I was now fine, I'd just look at him like
"are we living in the same house?".
Over the next weeks I had to have my blood pressure checked and the medication
adjusted accordingly as it slowly descended to it's proper level. Jack
lost his battle with the cancer June 5th and I was still having the after
bleeding from the birth, and when 11 weeks post partum I passed a mass
of tissue after much blood I became hysterical (when was this nightmare
going to be over?). I called my doctors office (Dr. B- was out of town
but they had another Dr. covering they told me to go to the emergency
room but not to drive myself), Cindy, David and my mother and all too
soon I was on the way to the hospital again, they had me in the emergency
room and when I overheard the nurse saying they were going to admit Mrs.
West panic hit me and I said "The hell they are, I'm going home."
David pleaded with me not to go and I told him it was just a knee jerk
reaction that of course I would submit to whatever they felt was necessary.
They brought me back up to Maternity and I thought "Oh God not here
again!" and they put me into one of the birthing rooms and as one
of the nurses was asking admission questions about what had been taking
place (I told her of Jack's passing away and the post partum bleeding)
and taking my vital signs when the television person came in, the nurse
sharply told them that I had just arrived and was being prepped for surgery
and that they could come back at a later time, again the kindness of this
nurse was so apparent especially when they offered that I could have Sarah
brought into the room with me from my home for my stay.
They had the head of Maternity come in to explain that I needed another
D&C, that he would be performing the procedure, and he became angry
when he learned how long I had been bleeding for, I told him that F- (one
of the mid-wives) and my primary care physician had both told me that
unless you're still bleeding 12 weeks postpartum they're not overly concerned.
When I told F- that Dr. H- had also told me the same thing she told me
it's what their taught. The Dr. told me that after the procedure I would
have the option of staying until the afternoon or going home, I chose
home. We left the hospital at about 2:30 in the morning but I was determined
not to spend time away from my children.
I am a firm believer that everything happens for a reason, you may not
know what that reason is at the time but time will eventually reveal what
the purpose was. One of the small comforts that came out of this was Jack
and I could talk about how terrible it is to be forced into a position
where someone else has to do the simple things for you, you had always
been able to for yourself before. I understood exactly how he felt, but
the large difference being I would live and he would not. God was kind,
he kept his faculties almost to the end when he lost his battle. I was
grateful God had let him see and hold our Sarah before taking him home.
I tell my children about their two Grampies in Heaven, and I try to keep
their stories and memories alive but my son still misses his "Poppy"
and will stomp on your feet to let you know (it was one of the games Jack
could play with him, Davey would stomp and Jack would throw his head back
and howl, oh how Jack wished he could've gotten out of that chair to play).
At Jack's wakes the line extended out of the funeral home to the sidewalk,
a friend of the family even arranged for a gentleman that had worked for
Jack to come up from Florida to attend, this man's appearance helped Diane
a great deal as he was more like an adopted son to them both rather than
employee. As for me, I kept introducing myself to people that I already
knew (most didn't let on, some thought it was grief, others thought I
was trying to break the tension with humour) when I realised I was doing
this I wanted to crawl into the nearest hole and pull it in after me.
This has now become a regular part of my life, I'll run into people at
the store who know me and I'll have no memory of them, I smile and hope
they'll say something that can trigger a memory and if they don't, I'll
describe them to David and if I'm lucky he'll know who they are. I, who
had once taken for granted, my excellent memory and retention skills am
at the mercy of a spotty memory and pray that I don't offend these people.
My marriage is on rocky ground because I am no longer able to express
myself verbally or physically and my husband had been in denial of how
sick I was, and would yell at me for not being the way I had been before
getting sick, to the point he thought my lack of sex drive was because
I was having an affair.
I wish I could give you a happy ending, but I can only partially oblige
you. I am alive, I am functional (unless I'm having a "bad brain
day"), my love for my children is untouched by what has happened,
I have managed to get my darting skill back but I will lose the ability
of strategy in the middle of the game and have gotten many a look from
an opponent when I shoot at something out of the ordinary. I will also
lose my fine balance at times which throws them off target (at least I
haven't hit a chalker yet). I can still find some hope in music, especially
Michael Crawford, his voice has managed to move my heart and mind (a very
difficult feat to accomplish), the first time I heard him post illness
I cried, he was singing of all the emotions I had once felt so deeply,
the good and bad. When I got to see him in concert this summer it was
also on the day I was told Sarah was developmentally delayed and I went
to the concert with a broken spirit, not knowing how I would now deal
with this latest blow, when I had thought that she had escaped problems
from this birth I was able to deal with my problems thinking better me
than her. But somehow his expressive interpretation of the music and lyrics
managed to convey enough strength to my battered spirit that, although
I cried through most of the concert, I left feeling that I would be able
to face that which now lay ahead of me.
That's about the extent of the happy stuff, the sad stuff is I am unable
to remember certain things like medication dosage (even with a huge chart
posted in the kitchen because then I'll wonder if I gave it and didn't
write it down) for ear infections etc., I took my daughter for one of
her check ups and another mother in the waiting room said quite loudly
that my son had his shoes on the wrong feet, she said he must have put
them on that way, I wouldn't let him take the responsibility for something
which I did, I told her I had done it and couldn't help but cry as I put
them on the correct feet, what kind of a mother can't remember to put
the right shoe on the right foot? This has happened several times. I will
also sometimes forget to buckle the kids in their carseats if I am distracted
while putting them in now. I will, on occasion, stop speaking mid-sentence
and can't remember what I was talking about. Someone will tell me something
and I'll have no memory of it. I used to be able to empathise with everyone
about their problems, now unless it's something big I feel nothing for
them. I avoid social contact because people will talk to me about something
and expect a response to their statement and I'll be damned if I know
what it is, I just stand there looking at them ending up looking like
an idiot. I can say to family members "brain fade" and they'll
understand but others might not be so understanding. I put on a good act
though, people don't usually realise I still have problems, now they just
think I'm an airhead. I now doubt my mind on many levels and what I once
knew for fact is now suspect. When speaking to my doctors I have to write
down what I want to ask, because I can't spontaneously form complicated
questions, it gets stuck about halfway through formation and I can't get
it out, and because doctors time is so pressed they can't always accommodate
my problem and I see them fidgeting as the silence stretches from my last
word. I end up frustrated and upset which only makes the problem worse,
many is the time I've cried in my car on the way home because I couldn't
get the words out. It is at such times that I hate the way I now am with
a fierce passion and wonder why God let me live if this is the way I'm
now going to be, the cruellest part is I can't remember simple things
but I am able to remember how I used to be.
That is where I am today, my doctors, after 5 1/2 hours of testing have
determined that perhaps cognitive therapy in conjunction with intensive
psychological therapy will help me further recover. The past year and
a half I felt like I climbed Mount Everest and now they tell me here's
another mountain you've got to climb one that's far more difficult than
the physical, and I have to climb it no matter how tired I am because
there's one thing up there that's not down here, hope that I might once
again be close to what I used to be.