Nana's Story, A Grandmother's Perspective
found out during the Easter holiday break last year
that we were going to have another grandchild. Our daughter
in law dropped the little photo from the first ultrasound
scan onto the breakfast table, on the Thursday before
Good Friday. Wow, I was thrilled; I have always wanted
heaps of grandchildren, their first child Damon was
about 15mths old at this time. I was SOOOO excited,
so absolutely happy, so full of hopes and plans and
expectations and all that good stuff that goes with
a much wanted baby announcement.
Then about 3 weeks later my
mother unexpectedly died what a shock! On the day of
her funeral, after everyone had gone, and it was just
my husband and I at Dad’s place, I rang my Daughter
in law to thank her for letting me have my son for support
on that day. She had been having a bit of a run with
morning sickness and so stayed home with Damon. I asked
her how she was, and she said “Oh not too bad
considering”. “Considering what” I
asked, “Tell you later, you have enough on your
plate now” she said……. Feeling a mild
panic I pressed her to tell me.
The last scan had showed fluid
round the heart, and they were worried about something
to do with the spine, and there were further tests to
be done. She sounded terrible.
So the tests were done and the
results came back definite full Trisomy 13.
I had NEVER heard of it, Carolyn gave me a printed run
down of what it was and what it meant, and what the
medical staff were ‘encouraging’ them to
do – and I went into shock to put it mildly. There
must be a mistake, there must be!!!
The tests showed it was a boy
and I asked then to give him a name, they had already
decided to do this, so we began to think about our precious
baby Luke. I was well aware of the ‘abnormalities’
that could happen, I trolled through the web site daily,
I read all the stories, I made myself look at all the
pictures … I thought that the only way I can deal
with this is to know as much as I can about it and then
I know what I am facing.
While I was going through this
personal hell, my lovely son and daughter in law were
being harassed to terminate. They asked us what we thought
– well what did we think! When we really thought
I mean REALLY thought, about it we could see that it
was going to be a horror road for them and that ALL
we could do was support them, in whatever decisions
they made. We told them we would support them emotionally,
spiritually, physically and if necessary financially.
They needed a lot of support as they faced the battle
of getting proper hospital and medical care, and trying
to find some support for a Trisomy baby to be given
the same chances as other babies.
I began to stress about the
alternative of having a child live that has major problems,
all the basic physical things that would have to be
done, the help that would be needed, the disruption
to life as we knew it. Then my mind would flip over
to the alternative, having a brand new baby die, or
worse still be born dead. It seemed that there was no
light on the horizon anywhere.
Then Steve and Carolyn told
us that they had decided to see it through to the end
or as far as Luke was able to make it. They said ‘when
we began this pregnancy, we naturally assumed that we
would give this child every chance to be whatever he
could possibly be, and we see no reason to change our
We organized to go onto broadband
internet, which gave me 24hours a day connection with
Steve and Carolyn, vital, as they live in another state
to me. It was absolutely vital for me, I needed the
close contact. We were walking a very fine line between
grieving for what was happening to us personally, and
trying to do what we could to help and support our ‘kids’
while they were out there on the front line having their
hopes plans, dreams, emotions etc etc just chopped up,
as the general medical opinion was – well its
Trisomy so that’s that, not worth the trouble,
not worth the expense --- hell this is a human life!
We were in contact constantly
with the MSN type thing, there were days of absolute
hopelessness and tears and total misery, and then there
were days when we realized that this little baby was
fighting to be whatever he could be. We prayed for a
miracle, I reminded God that he was the inventor of
chromosomes, so I could see no reason why He could not
‘fix’ the problem, I believed with all my
heart that God would ‘fix’ it and that a
perfect baby would be born and how wonderful it would
be for everyone. Carolyn kept telling me, he could not
live with the problems he had, but I was in the ‘disbelief’
stage of my grief, and I could not accept it.
Steve and Carolyn just wanted
to bring him safely to birth, they wanted to hold a
live baby in their arms, they did not want to be cheated
out of that joy…… their prayer was answered.
For 58 hours and 13 minutes they had their beautiful
live baby boy, a great big robust 8lbs and 5oz. He was
the biggest baby in the NICU and the sickest.
When I saw him for the first
time the morning after he had been born late at night,
my heart just melted. I could see the cleft lip and
the cleft palette, but it did not matter, this beautiful
big baby with the golden wavy hair was MY GRANDSON!
He was perfectly beautiful yet he was so very imperfect
in his little body. I learned that love is not about
looks, or ideas or expectations it’s about people.
We love perfectly when we love ‘even though’
instead of loving ‘because’.
Because this baby was attached
to all sorts of monitors no one got to hold him. After
the decision had been made to allow him to ‘go
in his time’, he was taken off the monitors and
then his parents were able to hold him, and they did,
all night till he left them early the next day.
It was absolute hell being
at home knowing that he was dying and knowing that we
had promised to give them the space they needed to be
with him for whatever time they had. Hell, knowing that
our kids were going through the worst experience of
their lives and we could do nothing to help them. Hell
knowing that, that lovely boy was leaving and I had
not ever held him in my arms.
Later that day they bought
him home for 24 hours, they were black round the eyes
from stress and their faces were just so sad. My son
bought his little boy into the house and gave him to
me to hold, all wrapped in his hand embroidered rug
with his mother and fathers hand prints on it to hold
him for ever. I cuddled that little body and felt my
heart truly break – my loss, my son’s loss,
my daughter in law’s loss, our family’s
Carolyn had the worst of it,
she had labored for a day and a night to give birth,
her body was all geared up for a live baby, milk etc
etc…all hormones raging, and then no where to
go. It was very hard for her to deal with all of that
physical stuff let alone the emotions.
As a parent I think the worst
sight I have seen was my big strong son in his best
suit carrying that little white casket. His face was
just a picture of pain. I will never know where both
Steve and Carolyn got the strength to help the rest
of us who were grieving….. they were in so much
pain but were still able to give out to others.
We are now just past the 12
months anniversary of his birth, death and burial and
from here I can honestly say that this has been the
worst year of my life… BUT I have learned so much,
I am not the person I was a year ago, I am stronger,
I am much more loving, I know the difference between
what is important and what is not., I know about fair
weather friends and those who will stick through thick
and thin, I know about how valuable time is, I know
how precious EVERY life is, no matter how imperfect
the shell that encloses the life. I know about honesty,
and trust and how wonderful it is when people meet each
other on a totally honest level…no rubbish, there
is not time for that.
I wish I had never had to go
down the Trisomy path, it was very painful, but I have
met some wonderful people through the web sites, and
our family is much richer because we met a little boy
called Luke. Without exception, every member of our
family on both sides, who allowed this little boy to
come into their hearts has been changed, and blessed
to bits. He will always be missed, there will always
be a sore spot in our hearts because of him, he will
never be forgotten nor the lessons that he taught us.
His mission was so short, but he fulfilled it and left
us better people that before he came.To my very precious
baby grandson Luke Steven Prothero, when I think of
you I am filled with a mixture of absolute joy and terrible
pain. You are so wanted by every member of your whole
family, but as we wait for your arrival tension grows.
Right now as I write this you
are safe and warm inside mummy, she will protect you
from everything that is possible to protect you from
yet even inside there where it as safe as it can be
for you something terrible has happened to you and you
little life is threatened.
I am hoping you are able to
understand love from those close at hand and those of
us who are further away. When I knew you were coming
I was so excited and readily welcomed you into my heart
just like your beautiful big brother Damon. I saw your
little photo from the scan, a tiny little person just
waiting to grow. When I was told of the problems you
have my heart just overflowed with love for you, my
arms ached to hold you and I wished with every fiber
of my body to be able to fix it all for you.
We have all cried many tears
for you and for us, but it seems this is a path we are
all walking to the end.
What a lot you have taught
us all in these past few months, we all know so much
about Trisomy, but apart from that you have taught us
lessons of love and patience. You have taught me especially
how perfectly beautiful, imperfect babies are, as I
read about other babies and looked at their photos I
learned that the only beauty worth worrying about is
the sort that is in your heart, physical looks are just
the outer covering for all that makes a person real.
You have taught me to love
without any restrictions at all. You have also taught
me that to do this means I have to stick my neck out
and that sometimes hurts. I have learned how precious
time is, nine months is a long time, but as the time
draws near and the danger for you grows I realise how
short it is.
I hope with all my heart that
there is time for us all to meet you, to hold you and
tell you ourselves how much you are loved.
Though I know you will almost
certainly never read this for yourself I want you to
know how absolutely happy I am that you are coming to
be a part of my family. How proud I am of your ability
to fight against all the odds and get this far and how
desperately sad I am to loose you. Do you know that
your name Luke means strong fighter.
You have the best parents,
they will move heaven and earth to give you just one
more minute of life, they love you with so much love
you can see it. They will fight tooth and nail for your
existence and quality of life. Your big brother Damon
is just wonderful, how he would have loved to have you
to grow up with and teach and play. I am pleased that
he is so young and will not be able to understand this
tragedy till he is much older.
My precious darling child, I
send you my love and my prayers know above all how much
we will miss not having you in our lives. The sound
of your voice, the touch of your hand, the color of
your hair and your eyes, watching you grow and learn
and being enriched by all of it.
With all my love
23rd July, 2006
to Family & Friends
The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.