Noises
Sal Hamlyn
To follow
Hamlyn S. Noises. Down Syndrome News and Update. 2006;6(1);21-22.
doi:10.3104/essays.378
Noises. A clock ticking. Heels walking along the corridor outside. My
breathing. Her breathing. Her fingers tapping numbers into a keyboard. All
noises. Noises going on before the words that changed my life were uttered.
"I'm sorry, there's a problem, I'll be back in a minute".
I lay on the couch, my swollen abdomen covered in gel. I listened to the noises.
The clock still ticked. Heels still walked along the corridor outside. I still
breathed ….. except my breathing wasn't relaxed any more. It was shallow and
fast. I tried to connect with the baby that kicked away inside me. I stroked my
abdomen trying to stop my anxiety reaching my unborn child.
The door opened and the stenographer re-entered, followed by someone else, her
more senior colleague. The noises continued. Except the tapping at the keyboard
was accompanied by murmured discussion, and long silences. And then, the words
came again, the words that were still screaming in my head from their first
utterance, "I'm so sorry Mrs Hamlyn, there is a problem with your baby". I sat
up, my face pale, my breathing laboured. They were kind, but I felt very alone.
"What do you mean?" I managed to utter, "What sort of problem".
They talked me through the problem that existed within the heart of my unborn
child. My beloved child that I, and my husband Richard, had already loved and
wanted for 24 weeks, and even before then. The words I heard mostly drifted over
my head until I heard the phrase "incompatible with life".
That phrase still sends shivers down my spine. "Incompatible with life".
Tears filled my eyes but I refused to give them air. I felt I'd completely lose
control if I started crying, and I didn't want to do that now, not here, not
alone, amongst strangers. "Is my baby a boy or a girl?" I asked, "I really need
to know".
They exchanged glances. A kind hand was laid on my arm "it's a little boy, and
he's very poorly". I knew what it was to "want" at that moment. I desperately
wanted this boy, not any boy, but this boy. I named him Isaac in my heart. I
wanted Isaac to live. I wanted Isaac as a brother for Joshua who was, at that
moment, at his cousin's 3rd birthday party.
Suddenly I knew I needed my husband, Richard, beside me. I needed him to be
strong for me. I felt so weak. I just stared at the stenographer and her
colleague, unable to form any words.
I pulled my mobile phone out of my bag and again stared, this time at the big
sign on the wall instructing "mobile phones should be switched off". My gaze
returned to the two people looking at me with sympathy. I challenged them with
my eyes, refusing to believe I would be made to use a public phone outside with
everyone watching. By "everyone" I knew who I meant … all those happy couples in
the waiting room just feet from me, the other side of the door, happily awaiting
their antenatal scan, excitedly making plans, or flicking through baby
magazines.
"It's OK" the taller lady said "Take your time and ring, and we will give you
some space". I didn't want space, I didn't want to be alone. I wanted noise, and
normality. Above all, I wanted hope.
It took a while to locate my husband but some time later he appeared with his
mum.
An hour after that we were home, frozen into shock. Looking back on those hours
now, I can't really remember much detail. I think my parents came round, I
vaguely remember Joshua, then just two, returning from his party and my trying
to look and sound normal.
The following day saw Richard and I on the train up to Guys Hospital in London.
We took with us friends, Bob and Lois. It's bizarre the things one remembers
when looking back at times of trauma. Our friends did a good job getting us
through that train journey, taking our mind off the fact that we felt we were
rabbits caught in a car headlights, about to be mown down. I recall this bizarre
conversation with Bob in a café at London Bridge Station where he informed us
that baguettes were often eaten in the war, as soldiers could place them down
the side of their trousers!!
All the time since the previous day, the phrase "incompatible with life" still
swam round in my head. At last, at Guys Hospital, talking to an amazingly kind
and gentle Consultant, Mr John Simpson, we felt we were given a "breathing hole"
through which to gulp air from the deep dark tunnel we'd been plunged into the
previous day.
Yep, the prognosis wasn't good. Our son did have a massive AVSD with severely
compromised valves. But we were given hope. He could have surgery, he may live.
My heart leapt, ……….. fleetingly, ………… before it felt that, yet again, the
breathing hole that had opened up was firmly clamped shut as the phrase "Down
syndrome" entered the equation for the first time.
I think my initial reaction was that Down syndrome wouldn't be a problem. I felt
so relieved that our son may live, that I couldn't think beyond that. It wasn't
until we got home that I realised I was secretly horrified that our son may have
Down syndrome. Suddenly I had to know, I needed to know. I'm not sure if my
husband felt the same, but he supported my need for the full picture. I didn't
want to live with "false hope" for the remainder of the pregnancy that our son
may not have Down syndrome. I wanted to know everything we were up against so
that I could best prepare.
It was not easy to arrange an amnio. This appeared to be because we had made it
clear that, whatever the results, we would not terminate the pregnancy. We were
asked many times what then was the point in risking the pregnancy by having one?
But the sense of urgency for facts refused to leave me, and we were finally
granted our wish.
We returned to Guys Hospital for the amnio, again with our friends. It didn't
take long, and as we left Lois later reminded me that the stenographer said to
us "go away and enjoy your beautiful baby".
And we did. He was born with Down syndrome about 10 weeks later.
I can't say those weeks between finding out he had Down syndrome and him being
born were easy; they were certainly not; in fact if I'm honest they were among
the most difficult weeks of my life. I didn't know whether to be happy or sad; I
didn't know how I'd cope; I feared our new son would "spoil" the "normal" life
we had. And the fear, deep down in my heart, that I hardly dared verbalise, let
alone whisper secretly to myself, was that I would not be able to love my new
son.
I read everything I could lay my hands on, devouring facts, statistics, stories
of hope, stories of difficulty. I became an expert on Down syndrome in a very
short space of time – that was my way of coping.
Joshua and Isaac
Gosh, all that is five years ago now.
Five years since we first laid eyes on our gorgeous son, Isaac, a name which
means "the bringer of much joy".
Five years since he joined our family. Five years since we handed him over to
the anaesthetist for open heart surgery, our own hearts filled with dread that
he may not pull through such a huge operation at such a tender young age.
Five years, and over 500 medical or developmental appointments later (… yep,
there are A LOT of appointments when you have a child who is different in any
way!)
Five years since he was born, and now he's at the local primary school
surrounded by his friends.
It has been five years of highs and lows; lows that are intense and lonely; and
highs that are intoxicating by their joy and their pureness.
We love Isaac with all our hearts, he makes us laugh, he makes us cry, he
teases, he jokes, he empathises. He teaches us so much about what is really
important in life. He touches so many people in a deeply positive way. Our older
son, Joshua, said recently "life wouldn't be nearly so much fun without Isaac".
We agree, we wouldn't have him any other way because he's perfect …. just the
way he is!!
Sal Hamlyn is a parent from the UK, and is also the author of © Fast Train, Slow Train, published in Down Syndrome News
and Update 5(1)