Angel
Kayda's Story
(December
2, 1988-June 23, 2000)
Kayda,
a unique name for a unique girl. A girl, who never said a word,
never took a step, but touched many hearts and brought hope to
families where there had only been despair and hopelessness. Let
me tell you about Kayda and her ministry.
Shortly after Kayda’s birth to a teenage mother, it became
apparent that  something was wrong so a CAT scan was done. The
result was devastating; she had no brain at all, her skull was
full of fluid and if
a flashlight was put up against her head the light would come
out the other side. The diagnosis was hydranencephaly and her
teenage mother was told she would die very soon. She was
relinquished for adoption. It also soon became apparent that she
was showing signs of withdrawal from the drugs she’d been
exposed to before birth. She was transferred to a children’s
hospital that had a neonatal abstinence unit. The hospital also
provided long-term care for children with severe disabilities.
So, Kayda had people around her, but was one of many. When she
was 9 months old she went to live with a family. I have little
knowledge of that time in her life, but have heard things from
people who knew her during that time, that tell me she was a
very unhappy little girl. She had many health problems and was
frequently near death. She responded with smiles sometimes to
hearing music or voices but didn’t move at all or really show
any awareness of any objects.
When
she was 4 ½ her life, and ours changed drastically. My husband
and I were unable to have children of our own and had been
waiting for a child through a program called the Associate
Family program (similar to fostering but different-it no longer
exists) for over 2 years. When we first met Kayda she was at the
hospital mentioned above for respite. She was sitting in a long
line of children sitting in
wheelchairs in the hall, with her mouth open and she was
breathing very noisily. I started to cry when I saw her as I was
overwhelmed with finally having the child we’d longed for for
so long. I was overwhelmed at first by how severely challenged
she was. I was told that her diagnosis was hydranencephaly but
had never heard of it and hadn’t a clue what it meant other
than she wasn’t supposed to still be alive.
Over
the next 2 months we got to know Kayda and her care better and
made plans for her to join our family. We had some major hassles
with the foster mom who was very angry that Kayda was going to a
new home. She knew that they’d been looking for a long term
placement for Kayda where she’d be the only child. Four days
after Kayda came home, she got very sick with her 6th
aspiration pneumonia in the last 8 months. We were told she was
dying-she also had a Do Not Resuscitate order (something no one
knew about. she wouldn’t have been accepted in the Associate
Family program had the people in charge known). so our hands
were tied.
Well
of course, she didn’t die then but her health was very poor.
She hadn’t had any adjustments made to medications in several
years. We were told she had major allergies but it wasn’t
worth taking the time to check to make sure. We were told that
about many things over the years with Kayda. She had been more
or less written off. One of her
biggest struggles was her breathing. She was always congested
and struggled for every breath. She’d been getting suctioned
improperly and dangerously numerous times every day. Several
times in the first month we had her, her breathing got really
bad and I was told by various people who were in our lives to
take her to the ER once again. But, each time, by the time the
Dr saw her her  breathing was clear and she was fine. I started
trying to figure that out and realized that her breathing
cleared up when she was lying down on her side. I started trying
that at home, and sure enough as long as she was lying down on
her side she was fine. I kept her in that position most of the
time for the next year and a half. I had to fight with all kinds
of people that wanted to get their 2 cents in about it not being
safe to feed a child who might reflux lying down. I consulted
with the people I trusted and just kept on. Within a couple of
months her breathing was clear most of the time.
When we first got her, she didn’t move at all. I’d put her
on her side with a teddy bear under her arm and it would be like
that no matter how long I left her. After about 2 months I
noticed that the bear would keep getting tossed onto the floor.
Then, one day I laid her on her sidelyer but didn’t strap her
down-there had NEVER been any need for it-I
turned my back for a fraction of a second and she had rolled
onto the floor. And, although I’d been told she felt no pain,
she started to cry just as any other child would do. Wow! That
just happened to be Christmas Eve. For Christmas and her
birthday which was at the beginning of December I’d hunted far
and wide to find toys that could be operated by accident. I’d
found 2, both Disney baby toys. I also bought her a Fisher Price
“Dinoroar”. I figured that it would be good to rest her arm
on when she was lying down and maybe one day she’d realize
that it made a noise when squeezed. Never could I have imagined
the miracle that was about to take place because of that pink
Dinoroar named Bruce.
One day shortly after Christmas I put Bruce up to her mouth-I
don’t  know why, I’d never done it before. She felt it next
to her face, turned her head
away, and then back and started to chew his head. Within 24
hours she had learned how to pull him to her to chew on and how
to push him away. She started chewing on anything that came near
her mouth. I noticed her hands seeming to explore textures and
reach out if someone was near her. I still bought the “no
brain, vegetable” garbage I’d been told so I thought I was
imagining things. I should have known better shouldn’t I?
Finally everyone had to admit that Kayda was clearly exploring
her environment. Within weeks, her toys that were operated by
accident, were no longer challenging enough for her and we were
kept busy finding new toys for her. She especially loved her
Sesame Street play gym and several busy boxes. Within a couple
of months she stopped drooling and had taught herself to
swallow. She learned to eat orally and did so without aspirating
for over 3 years.
No, Kayda didn’t suddenly get up and walk and talk as she got
older. She remained very severely handicapped but she blossomed
and shone and everywhere she went, people fell in love with her.
People stopped dwelling on her diagnosis and just
accepted her. School was a special triumph for Kayda. I kept her
out of Kindergarten
that first year we had her as her health was too fragile. Her
grade 1 year was a disaster to my mind-the staff l ooked only at
her diagnosis and felt she was a waste of time. She was in a
room by herself for over 2 hours of every day as she was
supposed to have a behaviour problem (her form of communication
was loud). So, our family moved. She attended her next school
for over 4 years. The whole school loved her and with each new
accomplishment everyone exulted with her. I’d walk down the
hall and people would come running to tell me something new that
Kayda had done. One of the neatest things she learned to do was
to activate talking switches called Big Macks. She also
activated other toys and
Of course, given her disability, life wasn’t smooth for Kayda.
She had several hip surgeries and many respiratory illnesses.
She started using Oxygen at night when she was 9 and full time
when she was 10. She stopped enjoying eating so went back to
being fed only by tube. She always missed more school than she
attended. Even with increasing health problems she still
participated as fully as possible in life. We began to attend a
church near our home and she was quickly accepted and loved
there. And once again, every time Kayda responded to someone,
everyone rejoiced.
She
had a very severe pneumonia when she was 10 and she nearly died.
At the same time she started puberty and screamed constantly for
over 3 months. After ruling out everything treatable we started
using a mild sedative and she went back to her old self-more or
less. But, her tiny seizures started increasing and she was soon
having up to 400 small staring spell seizures a day. Shortly
after she turned 11 she started getting a respiratory infection
every time she was taken out. She also didn't seem to enjoy
school any more so I made the decision to keep her home-for
awhile I told myself.
In
February2000 she had one more pneumonia, this time caused by
aspirating on blood from a nose bleed the
nerve and asked her pediatrician whom we loved dearly, if she
was starting to go downhill. He sadly, said yes. At that time,
though her main problem was seizures and we thought that she
probably had at least a year or so left. She died less than 3
months later near the end of June. She started sleeping most of
the time. Right around this time she got a lovely new chair
called a comfy chair. At first I blamed the chair for making
Kayda sleep.
Her
body had just plain shut  down and was tired. We were so
fortunate in having the only children’s hospice in North
America in our area. About
a month before she died, she stopped tolerating formula, even
though we’d switched her to one that was already partly
digested. She did ok on pedialyte.
We’d
had discussions with the hospice over the months as to if she
qualified for end of life care. They didn’t think she did but
arranged for her to come in for an evaluation for 5 days the
first week of June. The dr there looked
at her when I brought her in, and said right away she was to be
switched to their end of life program which meant she had
unlimited access to the facility (previously she went there for
respite for a maximum of 10 days every 6 months). I was shocked.
I had expected to be told that I was over reacting and that she
was fine. She did well with a new medication while we were there
and tolerated her formula really well-until the day we went
home. Six days later it became apparent that she couldn’t even
tolerate pedialyte and I had to call the hospice and ask to
bring her in. She lasted 8 days after we arrived, even though
she could take no liquid at all. Everything we put in just sat
there including medications.
The
people there were wonderful. We moved in (including our dog) and
had constant support and care. With every new symptom Kayda
developed they worked hard to keep her comfortable. I just
can’t say enough about how those people helped us.
Although I knew when we went to CP that last time that this was
"it" actual acceptance
deep down took a long time and much repetition of the process of
acceptance by the nurses. Finally around noon on the day she
died I gave in and seemed to truly accept that it was time to
let her go Home. Instead of the quiet soothing music we'd kept
playing in her room I decided that it was time to sing Kayda
Home and put on a cd of children singing praise songs which she
had always loved. Later her nurse for that day said that she
could tell that I'd changed the minute she walked back into
Kayda's room.
Several
times during the time she was there, her breathing slowed and we
thought she was going. One time, was at 3 pm on June 23. So we
put her on the couch in between my husband and myself. My
husband wasn’t ready for her to go though, and he kept
whispering to her “breathe Kayda breathe”. In the other ear
I was saying “it’s ok to go now Kayda, you can go Home to
Heaven”. She kept breathing and did better for awhile. I
actually dozed with my head resting on hers. That day she’d
been uncomfortable being picked up so I’d just left her most
of the time. Around 11, I all of a sudden decided I needed to
pick her up. I put on a tape of music that I always played when
I needed comforting and picked her up and held her in her very
favourite position-straddling me with her head on my shoulder.
Although I didn’t realize it for probably about a half hour,
she died shortly after I picked her up. My beautiful Ray of
Sunshine flew home to Heaven knowing she was loved.
Straight from my arms to the arms of Jesus.
It
has been 4 months now, since she died. Oh how we miss her!!!!
But, we’re managing. I attend a grief support group at the
Hospice every 2nd week. There are 5 of us whose
children all died within a 3 week period-not all were at the
hospice when they died but had been part of their program. That
group has really helped me manage.
When
Kayda first went to the hospice for the last time, I felt there
would be no reason for me to go on living after she died. But,
God reminded me of the book I’d started about her condition.
There was my reason to go on. The book grew and grew and it has
much more about Kayda than I’d originally planned. It has
become her legacy and will bring hope to many families who are
still being told by Drs that their child with Hydranencephaly
would be better off not living.
So,
although she never spoke a word, she has changed the life of
many children and brought hope to their families.
The
above appeared in the December 2000 edition of Broken Hearts,
Living Hope newsletter. This is a publication for families who
have had children die.
As
I started my journey without Kayda in my life, a CD called
Dancing with Angels by John Mandeville & Steve Stiler became
very special to me. The title song seemed to say it all:
It's
just so hard to believe
All I have to hold is your memory
From this side of the clouds
All I see is grief
But on the other side I know you're free
and you're
Dancing,
Dancing with Angels, Dancing
Somewhere
just out of my reach
You're keeping heavenly company
When I'm feeling lonely
It's for myself I cry
'Cause there aren't any tears in paradise
Where you're;
Dancing,
Dancing with Angels, Dancing
I
can almost hear your laughter
See the fullness of your joy
Knowing that you're present with the Lord
And though today I miss you
I know the day will come
When every believer
Will behold the Son
And we'll be:
Dancing,
Dancing with Angels, Dancing
March
2005: I can't believe that
it's been almost 5 years
since Kayda died. But, as
you can see by the size of
the website and our
thriving mailing list plus
the 2nd edition of the
book which nears
completion, her legacy
continues on. No one will
ever forget that Kayda
lived.
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