Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


Cot Rage

Both my children have spent their early weeks and months in a Neonatal Intensive Care Unit. These are, quite simply, extraordinary places. Premature, fragile human beings fighting for their very existence. Parents huddled next to incubators, manoeuvring themselves around the myriad of cables, monitors and alarms just to stroke a jaundiced cheek or feel the grasp of a tiny finger. Dreams and expectations of what having a baby would be like are left outside the door. Discarded, like a broken umbrella. New dreams have to be found and clung to. Hope takes on an entirely new meaning.

It’s hard to think of other places that contain quite as much emotional energy under one roof. Deeply personal conversations taking place in hushed voices in the vain hope that the family sitting at the next cot won’t hear.
Personal space is not something you can expect in a NICU. Better get used to the fact that everyone around you will soon know your pregnancy & birth story, what you ate for dinner last night and what came in the post this morning, very quickly!

For the parents of these tiny guests, the units represent a place of safety and security. For those who spend longer than a few days here they become home. Familiar. Comforting even. Routines take on a new face. Doctors rounds, 2, 3 or 4 hourly feeds. ‘Cares’ is no longer just an emotion; Aprons on, gloves at the ready. Nappies to change, tiny mouths swabbed, temperatures taken. NICU nurses become surrogate mums (or dads) to our little ones. A shoulder to cry on (frequently in my case) or someone to laugh with in the darkest of moments.

Of course, we long to be in our real homes. That is where we left the dream. That is where we can start living again. But for now, this is home. This is where we must stay, whether we like it or not. Make the best of it.

To begin with, we don’t see anyone else in the room. It’s like we are wearing blinkers.
Our baby is all that matters. Not because we don’t care about others, but because the whole terrifying experience of finding ourselves in this place is almost too much to bear.
But, after a while, we become accustomed to our surroundings. Part of the furniture even. We know all its ins and outs. We are the residents. We are here for the long haul. Don’t complain. Just get on with it. We can almost forget our initial fear and bewilderment.

So, when an angry father of a new born baby boy came into our well-ordered and familiar ward, demanding instant answers from the overworked nurses I took offence. Ignoring everyone else on the ward, he berated the nurses with his questions. How long would his son be here? Why was he here? Why couldn’t he be sent back to the post natal ward to be with his recovering mother? All reasonable questions of course, but delivered far too aggressively.
The nurses kept their cool, gently but firmly answering his persistent questions. The baby just needed a few days in NICU, nothing more. He would probably be home by the weekend.

From the seclusion of the space beside my baby’s cot, I raged. Silently of course. How dare this man come in here and create such a fuss. Could he not see that there were others besides him and his baby in the room?

No, he couldn’t.  Any more than I could on that first visit. World War three could have broken out in the next room and I wouldn’t have cared the day we arrived. My baby was all that mattered.

But shock wears off.

Didn’t he know that some of us had been here for weeks? Months even. At least his baby would be home in a few short days. Able to lead a normal life.  Mine, with her extra chromosome, faced a very different future. Home by the weekend? I should be so lucky.

Selfish and a bully.

I mocked this father each time he appeared. Inwardly. Especially the time he put his baby back onto the tilted mattress, said his goodbyes and left for a cigarette.
He smoked. He smoked!

As he left, I glanced across to the incubator. The baby’s head now where its feet should be. The nurses’ raised their eyebrows as they quickly rectified his error and turned the baby up the right way. How we laughed.

Silly man.

And yet this little baby was nothing to do with me. Just like all the others. That’s not to say I didn’t care about them. Of course I cared. It’s just that they were literally, as well as legally, none of my business. Each time the doctors did their rounds we were reminded of that fact. Parents would reluctantly trundle out of the ward to the family room, waiting their turn to speak with the doctor, so as to protect patient confidentiality. Each one impatient to return to their cot side vigil.

A NICU is a place where the close proximity of fragile human existence and parental pain cannot be ignored. It’s in your face. All the time.
And, one day, this particular father’s pain got well and truly in mine.

We sat on opposite sides of the family room. Him with his hang ups on one side and I with my opinions on the other. Never the twain shall meet. Except this wasn’t like real life. This wasn’t a library or a post office or some other public place where we could ignore each other and get on with our own lives. Normal life was suspended.
This was a NICU and we had something in common, him and me.

The doctors were doing their rounds. It was a quiet morning and we were the only parents in the room. I picked up a magazine. He spoke.
How long have you been here? He asked.
Mentally rubbing my hands with glee I answered him. Seven weeks.
He showed little reaction.
Tough isn’t it? He said.
I nodded.
My turn.
So how long do you think your little boy will be here? I asked. Of course I knew the answer but I was still trying to score points in my ridiculous game.
Not long, I hope. He answered. Then, eyes glazing over, he told me.

His wife lay recovering from a c section somewhere on the floor above. Too unwell to be with her baby. Not unusual, painful as it is, it happens.
The baby was doing ok but needed some extra support. He’d gone a funny colour after birth and the doctors wanted to keep a close eye on him.

I wasn’t prepared for what followed.

This little baby boy was his second child. He had buried his first. Just under a year ago. Sudden death*.

Unexplained. In his cot.

In those few moments alone in the waiting room I saw a completely different man from the one I had judged a day or so before. Not a selfish, arrogant man, bullying the staff and ignoring those around him. But a frightened, terrified man, scared that history was repeating itself and that he would be forced to bury a second child. A man who was trying desperately to support his wife, whose baby was not where it should be….in her arms. Again.

Instead of raging at him, silently judging him from the side of the cot, I now prayed for him, his wife and his child. Ashamed. The very least I could do.

Our time spent in NICU, was, on occasions, unbearably hard. An enormous strain on the whole family. Yet it took this man’s story to make me realise that, however tough life gets, there is always a need and usually an opportunity to reach out to others. I didn’t have a monopoly on pain or hardship back then and I still don’t now.

One of the most amazing discoveries I have made on this special needs journey is this:
The parents who have the most demands on their time in caring for their sick or disabled child are often the ones who are first to reach out to others in similar situations. They never minimise another’s pain or difficulty, though it may be less than their own. And, I am privileged to count as friends those who have even lost babies and children of their own; yet still they reach out and help me in so many ways.  Compassionate and selfless. Alert to the struggles of those around them, even though their own pain and grief goes beyond anything I have had to bear. These are the “amazing people” my GP told me I would meet, as I struggled to come to terms with Hazel’s condition back then.

After a few days, the baby was well enough to return to his mother and leave hospital.
Happy ending? I think so. I hope so.

But it’s not for me to judge.

*Saying Goodbye is a charity offering Support & Services, for anyone who has lost a baby in pregnancy, at birth or in early years.

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016



Dream Changers

What are your dreams for this New Year?
Four years ago my dream for the New Year and my family’s future was very different to current reality.
Happily enjoying being a mother of one after an arduous wait of nearly ten years. Life was pretty much near perfect. Only one thing missing.

Another child and the curtain could be fully lifted on our longed for family production.

The scenes were written. The set was ready. Tickets were sold. Family and friends only too eager to join us for our opening night. Baby number two would complete our family and we could live out my dream. Happy family doing happy family things. This was what God intended for us, I felt sure. Setbacks and glitches…well we knew there would be some along the way. We were prepared for a few first night nerves even. After all, our first ‘pilot’ show hadn’t exactly been smooth. The main characters (mother and baby) ending up close to death in intensive care at 29 weeks pregnant whilst doctors prepared the audience (family) that the show might not go on.

Thankfully it did and despite the difficulties, the ‘show’ went onto receive rave reviews.

Nothing short of a miracle in fact.

Second time around and the performance would run smoothly. Preparation was key. Expectation was at an all time high.
Somehow though, we had unwittingly prepared a different script.

Our script began with an announcement. Baby number two is on its way! God has blessed us and we are going to be a family of four. As if being a family of three, or two or whatever was any less a blessing, but that’s the naive way I thought back then.

In order of appearance, the doctors came on just after the main players. This time everyone was prepared. Ready to avoid the complications of last time. All would be well. We were ready to go.

Break a leg.

Scene two arrived and someone threw away our script.

The Sonographer went quiet. Then she left the room. I stared at the ceiling. Alone on the bed; my husband had,at my suggestion, not taken time off work, preferring to save any leave for when we really needed it later on.

Trying to be brave. Trying not to cry.

On stage walked the cheery consultant. I knew him well from the first show. He saved my life in scene 4. He saved the show. Everything would be fine.

The smile was the same but the lines he delivered were not. Though he was gentle in his words all I heard was the uncut version.

Your baby is unlikely to survive the pregnancy.

And, if it does, it may well have serious heart problems as well as some kind of syndrome.
He rattled off the names…Edward’s, Turner’s, Noonan’s or Down’s. If I tried not to cry it was pointless.

Silently, I screamed. And the curtain came down on my dream.

6 months or so later, though it felt like a lifetime, our beautiful little girl with an extra chromosome was born. Against the odds. A new script was being written. Oh, there were many times in those early days that I wanted to revert to the original. If I’m honest, I still do sometimes. No parent wants their child to face the kind of suffering and difficulty that Hazel has sometimes had to face. We see more of the medics than we do our neighbours and we even now have our own parking permit for the Children’s Hospital!

So, naturally, I crave a better existence for her. What parent wants their child to face discrimination, stigma and rejection? Do I wish that she didn’t have Down’s Syndrome? Yes. Often at first, now only occasionally so. But what I am really longing for is for her to live in a world that doesn’t reject her, discriminate against her or believe that it would be better off without her.

Into Scene three or was it four? The curtain had lifted on a new play. It looked very unlike the old script – at times resembling more of a pantomime with the constant change in scenery, characters and plot. One moment we were booing and hissing as another wretched appointment landed on the doormat. The next we were cheering from the rafters as Hazel smiled for the first time, came through surgery or reached some other milestone. Even the ‘baddies’ – those people we didn’t particularly want to be spending time with in another therapy clinic or the operating theatre – became friends and allies…all on the same side. This script was a true variety performance but with no rehearsal; just straight onto the stage and under the glare of the bright, uncomfortable lights.

In reality the new script was no pantomime. That would be doing it a major disservice. No. It was, without question, a Love Story filled with dramatic, tense, edge of seat stuff. Heart wrenching at times yet utterly uplifting too.

This wild, beautiful, challenging and desperately vulnerable little girl captivated our hearts from the very beginning. I soon realised that her extra chromosome was as much a part of her as the smile that lit up her entire face, or the cry she made each time she wanted to be picked up from her neonatal cot. Hazel had arrived. Not a Down’s baby, though of course she was…but Hazel Joanna.

The audience began to fill up. Strangers became friends. A whole community that we previously knew nothing about took their seats in support of us,  joining us even and becoming part of the story. Our story, now in the round. became part of a production much greater than we could imagine.

Our first dream was a good one. It’s just that the script was far too limiting. Hazel, the dream changer, made certain of that.

And whilst this new dream felt, at times more like a nightmare, it has still proved to be greater and more rewarding than anything we could have imagined.

Better. Not because life is easy. The opposite is true. Daily life can be very challenging at times. Better, because Hazel has shown us there are more important places to go in our dreams. Places that include others and not exclude them. Places that show us what community really is. Places that force us to slow down and take life at a different pace. Places that cause us to take hold of what really matters and let go of what doesn’t. Places that reveal more joy than we could have ever imagined.

Of course dreams don’t always come true, I know that. But Hazel has proved that they can change and open up a new, more fulfilling reality. And, after a while, the old dream becomes redundant.

Not needed.

When Hazel was born I recall reading an article by mother of a boy with Down’s Syndrome. One thing she said stuck in my mind….that she wished that every family had a person within Down’s Syndrome in it.
At the time, I could not get my head round this idea. It made no sense. Three years on and I get it. If you don’t know someone with DS, believe me, you are the one missing out!