Many of you may have wondered, "What's the point?"...
or perhaps pitied us for 'having' to continue carrying
a child who is not going to live for long... I understand
these thoughts, because when my sister was carrying
Thomas Walter (who had been diagnosed with anencephaly
at 18 weeks and lived for 17 1⁄2 hours after
birth) I really didn't properly comprehend the whole
situation. I knew it was the 'right' thing to do.
I didn't question that I would have no other option
if the same thing ever happened to me (although I
knew it never would!) But I thought how awful it was
to know for over four months that the child you are
carrying is unable to live outside your womb.
Once he was
born, I was able to hold my nephew and see him finally
as a real person - a precious unique creation - I
began to realise that there was a lot more to it than
mere 'ethics'. When, much to my disbelief, my own
baby, Benedict, was diagnosed with this same condition
four years later - I was finally able to grasp it,
although it has taken me a long time to be able to
put my thoughts into words. It is only since Charlotte's
diagnosis that I have found words that almost convey
my feelings.
Some people
think we carried Benedict and Charlotte to term because
we don't agree with abortion, because we are Catholic,
or perhaps because our nephew was carried to term
after a fatal diagnosis. While these factors probably
all played a part in our immediate refusal of the
option to 'terminate', this is not what it's all about!
It's about love! It's about our baby! It's not about
some tragic, fatal medical condition - it's about
our child. We do not possess more strength than other
people. It's not because we can cope where others
wouldn't. There is no way to avoid the sad fact that
she cannot live long after birth with this condition,
but causing Charlotte to die earlier will not stop
this happening. Causing her to die earlier will only
take from us the beautiful experience of knowing and
loving her.
The tragedy
is not the fact that we know our baby will die. The
tragedy is that our baby will die. It is not nice
to know for months beforehand, but it gives us a chance
to appreciate a life so brief, and not to miss a moment.
The value
of Thomas Walter, Benedict and Charlotte cannot be
measured by the length of their lives - we don't apply
this yardstick to adults, so why should we to babies?
A baby is not a possession, an accessory to acquire.
A baby is a gift, a new entity, a precious, individual
soul loved by God. We are created for a purpose, there
is a reason for our being here. Even if that reason
is unclear to us most of the time, we are constantly
affecting other people in our families, communities
etc. Who knows what purpose can be fulfilled in 9
months and one day? I don't know, but God does. I
do know that Benedict left a lasting impression on
our family, he made us slow down, savour life, and
treasure our other children even more. He made us
realise that we cannot control or predict what will
happen in the future, he made us rely on God. And
how often are we given the opportunity to really give
another person true unconditional love? Love that
truly expects no return? It is a blessing to experience
that kind of pure love!
So don't pity
us for carrying a child we know will die. Carrying
this beautiful person is an honour. Grieve for the
fact that our baby will die. We wouldn't wish away
the time we had with Benedict, and also this time
we are now experiencing with Charlotte, just to save
us the pain of losing them. I've always thought of
it like this; if your 3 year old was diagnosed with
untreatable, fatal cancer and had only 4 months to
live; would you prefer the doctor kill your child
straight away so that you didn't have to wait for
his/her impending death? Or would you prefer to spend
as much time as you could with your child and love
him/her for as long as you had left?
Someone asked
us after Benedict died, "Was it worth it?"
Oh, YES! For the chance to hold him, and see him,
and love him before letting him go... For the chance
for our children to see that we would never stop loving
them, regardless of their imperfections? For the chance
to give him everything we could? Oh, YES! Love your
children, and remember that they each have their own
unique mission. Children are always and only a blessing
from God - even if they don't stay very long...
"I
have my mission" by Cardinal Newman
God has created
me to do him some definite service. He has committed
some work to me which He has not committed to another.
I have my mission - I may never know it in this life,
but I shall be told it in the next.
I am a link
in a chain, a bond of connection between persons.
He has not created me for naught. I shall do good.
I shall do His work. I shall be an angel of peace,
a preacher of truth in my own place while not intending
it - if I do but keep His commandments.
Therefore
I will trust in Him. Whatever, wherever I am. I can
never be thrown away. If I am in sickness, my sickness
may serve Him; in perplexity, my perplexity may serve
Him; if I am in sorrow, my sorrow may serve Him.
He does nothing
in vain. He knows what He is about. He may take away
my friends. He may throw me among strangers. He may
make me feel desolate, make my spirits sink, hide
my future from me - still He knows what he is about.
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.
