Emily Margaret Casey
Birthday July 31, 1996
Emily Margaret Casey, born 31st of
July 1996 at home, in a birth pool in the small hours of the night. She opened
her beautiful eyes to candlelight. I held her as our midwife checked her
over. My husband Dermot and our two teenage daughters Sarah and Gillie
marveled at her perfection. Three years later, Christopher arrived, in the
bath this time! We were happy beyond our wildest dreams.
Emily was so bright and
intelligent, she spoke fifteen to the dozen, she started to draw (with her
left hand) when she was 3 and a half, she danced and sang, she twirled around
in her tutu, she ran, jumped and climbed. She used to bring her toys up to
the top bunk when Chris got big enough to try and get them! The new
millennium seemed to be bringing us more joy than we had ever imagined. A few
days before Emily got sick, Gillie (who was 17) said to me "Mum I feel afraid
because we are so happy..." and I said to her "It's OK to be happy, we're
meant to be happy, that's how we really are meant to be". It's what we were
created for, I still believe... a few days later Emily fell ill.
She had minor fluey symptoms one
Saturday evening. I gave her Calpol (Tylenol) and they receded. I actually
suspected a UTI. I checked her after Chris fed at 4.00 am. Her temperature
was up and she had wet just a little. Without switching on the light I changed
her sheet as she slept and thought 'a UTI for sure'.
On Sunday, 15th. October 2000 at
8.00am I woke and looked at Emily. She had a blue mark on her face, then I
looked at her legs. They were turning black and blue. I knew at once this
was meningococcal sepsis and I ran to phone an ambulance. While we waited she
woke, spoke - her last words with an intact brain 'My hand smells funny'. The
skin was breaking down. Emily vomited coffee grounds and when I tried to lift
her up to the ambulance men she was floppy and I couldn't even do that. Chris
slept through the whole thing and as I left the house I could not know that it
would be 3 weeks before I saw him again.
In the ambulance Emily's lungs
were failing and they were giving her oxygen. When we got to the hospital
they had a team of doctors waiting for us. It was bizarre, like being in
something on TV. Within minutes she was intubated and on her way to Intensive
Care. For two days we waited outside in this awful yellow room, waiting,
waiting. They only let me in for short visits. We got Sarah (19) and Gillie
(17) to come in too because we were afraid they might not get to say Goodbye.
After 48 hours they came to tell us that they were losing her and nothing they
could do was improving her condition. That was when I insisted on being let
in there all the time. I wanted to start fighting for her. I sang and read
and touched. I spoke constantly so she would know I was there all the time.
I told her over and over that she was getting better. I prayed. We prayed,
our rector and other clergy and friends came and prayed with us. I blessed her
with medals and relics sent from all over Ireland. The room filled with toys
and flowers but her body continued to bleed. They drained both lungs, they
drained her abdominal cavity, they poured in 13 units of whole blood, plasma
and fresh frozen platelets. If anyone asked was there anything they could do,
I said "give blood". (Someone out there had donated the blood that was pouring
into Emily and I thank them with all my heart).
Eventually Emily's vital signs
began to stabilize. She had spent four days in drug induced sleep but her
eyes remained equal and reactive. On the fifth day her eyes became fixed and
dilated. The disease had attacked her brain. CT scans showed multiple
strokes - many small bleeds throughout the brain. This was the point when we
thought that they would want to withdraw Intensive Care. We feared that she
was brain dead. I felt the presence of God, I felt a quietness and I found
myself trusting that if she fell, she would be gathered into infinitely loving
hands. I begged to be allowed to keep her.
For the next 3 weeks as Emily's
physical survival gradually became a possibility, then a fact I watched and
sang in ICU. My little girl had no speech, no movement, no responses. Her
eyes opened but seemed unseeing. She scored 3 or 4 on the Glasgow Coma
Scale. We took stock. Her left leg was mangled from the knee down, a mess
of ruined skin and bone. Her body was covered in wounds, some enormous. She
was alive. They moved her down to St. Anne's ward and I worked at feeling
gratitude and hope. I sobbed for hours one night, despair sneaking in around
the brave front. The next morning, Saturday, four weeks after she had
fallen ill, I was shaking a little red rattle. Sun poured into room and Emily
smiled. There are no words for how I felt! Dermot came in a few hours later
and I told him to try and make her laugh and she did!! Neurology came down to
check out our story and the doctor left beaming, saying 'Congratulations'.
The little girl who danced around
our home until the 15th. October 2000 has never really returned. We have a
distilled, more limited, profoundly changed child today - yet she is still lit
by the same immortal spirit. This child is a valiant being who stayed in part
because I called her back with such love and longing. But her survival was a
choice she made, a choice that lies between her and God. Emily is here at
God's will and I just have to trust that between the two of them they have a
plan!
Emily also owes her life to the
staff of Our Lady's Hospital for Sick Children, in Dublin, Ireland, where we
stayed for 5 months. During that time I slept on a mat beside her bed and my
sister Caro became foster mother to Christopher. Physio started trying to get
Emily moving. At first, the only thing she could move was the middle finger
of her left hand. Orthopaedics and Plastics saved her left leg from
amputation although it is severely deformed. They will be working on it for
years. Her right leg is affected by hemiplegia from the strokes and has no
movement below the knee. Eventually we moved to National Rehabilitation
Hospital, Dublin, for another 14 months. By the time we were discharged from
NRH she had begun to recover a version of herself and the staff worked
tirelessly to maximize her recovery.
By discharge Emily had begun to
crawl and had good use of her upper body. She was kitted out with a
wheelchair, fitted for bilateral AFO's (ankle foot orthoses) and was beginning
to take steps in a walking frame. Today she crawls FAST, can knee-walk about
12 paces and tries to take steps through her feet. She manages 2 before she
goes wallop. I have to be very watchful! She can really cover ground in the
walking frame although she uses the chair for longer trips. She can self
propel in the chair but if we really want to go anywhere, I push. Emily tells
people "I am a girl who has lots of ways of getting around". She does
remember being able bodied, and that is tough on her.
Unfortunately Emily has recently
been diagnosed with epilepsy which presents as absences and tummy pains. This
was a blow, as we had hoped she would escape this sequel and it has
implications for the future. She has been responding well to the medicine she
has been given (sodium valproate). Overall, her neurological recovery has
been nothing short of miraculous.
Today Emily can speak very
clearly, with humor and intelligence, but slowly and with word finding
difficulties. Her social skills are sometimes inappropriate, her short term
memory is affected but improving and her mental processing is slow. Although
her intelligence is good her speech and communication are not quite good
enough for her to keep up with other children. Emily is more in the company
of adults and of her faithful brother Chris and special cousins Siobhan and
Roisin. Still she keeps on trying to succeed with other children and we hope
and pray she will have friends one day.
Emily has learning difficulties
but with extra support is beginning to read a little and count up to 20. She
is drawing again and starting to write. She is thrilled with her
accomplishments and is turning out to be a beautiful singer. She loves her
Disney videos and can sing and recite whole scripts!
As we approach her eighth
birthday, Emily is most often cheerful but does get frustrated and furious at
times. Disability makes everything SLOW. We all get frustrated despite the
fact that we get a lot of support from Enable Ireland and from Emily's school
placements. We sometimes have sad moments. Yet we also are really having fun
together as a family again. Sarah (23) is about to graduate brilliantly as a
textile designer, Gilly (21) is a fashion student and doing very well,
Christopher is 4 and goes to Montessori and is mad about Star Wars.
Dermot and I are pretty exhausted but pretty happy again too.
We all delight in the Emily we are
blessed to have with us today.
Most importantly Emily is a child
who can give and receive love (and laughs and tears and big hugs). Whether
she ever would be able to know love again was the terrifying question that
hung over our heads during all those dark days in ICU. I am overjoyed that
the answer is YES.
We are blessed to have found
Frankie Milley and Meningitis Angels. I thank God for Ryan, for Frankie and
for all of you out there whose lives have been altered forever by this
disease. And I thank God, most of all, for Emily.
by Emily's Mum, Stephanie Casey.
