..wisdom comes in many misguided forms..

In the midst of a crisis, we often meet inspirational people… today’s story is one of those…

I don’t remember the first time I met her.  Sometime soon after my eldest son’s admission to the Royal Childrens Hospital in Brisbane… late on December 6th, 2001.  My mind was a haze of information, concern for my eldest child and my own little bubble to hopefully protect me from many of the extreme emotions I was dealing with at the time.  In short, I was a little insular and a lot selfish.

However, I do remember her first words to me… as I walked into the ward on my daily visit (well at the time I was allowed to come and go under my own steam anyway),
“Haven’t you had that baby yet?”  I’m not sure how I responded… I just remember thinking, oh no… not another ONE!   At 39 weeks pregnant with my firstborn taking up residence in a surgical ward, I’m not sure I’d yet found my sense of humour again.  Either way, it seemed inappropriate to reply with anything other than the obvious.  No.   And smile apologetically.

It became a bit of a ritual upon our paths crossing each day.  A greeting that would always snap me out of my very sombre world… and remind me that I was carrying another life.  One that would soon arrive to complicate life a little more.  As any new arrival does.   Somewhere in the days that followed, I became aware that she was the parent of another child… also in the ward.  We didn’t get to any formal introductions during these exchanges.

There was little to give away any details of patients but I could tell her baby was around six months old.   Various boys often visited with their father… and I assumed this was the rest of the clan.   My own mind was caught up in a whirlwind of diagnoses, scans, tests, nurses, specialists and surgeries.

My waters broke early on the morning of the 22nd… by late afternoon I returned with a wheelchair, midwife as escort, my partner and our new baby girl.  A short introduction for my very ill lad and his new sibling.   My return to the Maternity wing was bittersweet.

After much pacing and impatience late on Christmas Eve, we were discharged and I walked from the hospital, this time with my daughter, to sit at my son’s beside again.

The mysterious lady was busy, hastily making an exit with baby, family and all medical supplies, in a small flurry of noise, wishing staff and others a Merry Christmas.   My heart wished we were going too… and even dared wonder if they would be back.  In that same instant, I felt a pang of guilt, wishing that thought upon anyone.

Christmas day, itself was quiet, save for the efforts of nurses, doctors, volunteers and other parents who did their damnedest to make the day as fun as it could be.   I have no idea where we’d have been without them.  So surreal.

There was a new chime in now for everyone… had we named that baby yet?  Who had time for names?  She answered to everything we called her, Beautiful, Adorable, Sweetie, Gorgeous… surely she didn’t need anymore?  :-P    Our oncologist was probably the worst, trying to point out how horrible this could be for her later in life.  We laughed it off.

It was days later I realised the lady (and her baby) were back… she strode in rather purposefully, baby in the crook of one arm… a mass of tubes in the other, looking rather apologetic.   A little later again, I passed her in the corridor.  Attempting to calm a rather upset infant, who was obviously hungry but needing to go into surgery.   A finger in the little one’s mouth was obviously not being well received.

It seemed we were well known by this stage in the ward (I have no idea how ) and by now I knew her first name, Mary.  She had three older boys, redheaded and boisterous.  And that was about where my knowledge ended.

Until New Years Eve… after much cajoling and prodding about a name, we found one.  Or perhaps it found us.  I’m not sure which.  But I thought it was time to officially let our neighbour know the outcome.    I gingerly knocked on their room door and made my way in when invited, my daughter in my arms.
I gave her our news, our little miss finally had a name after 11 days.   Her name though, stopped her in her tracks.  She introduced me to her baby daughter… Alyssa Grace, a surviving conjoined twin.  Her departed sister’s name was Bethany Rose.  Somehow, without any of us knowing, my baby daughter had been bestowed with two names, each that related almost directly to each twin.  Suddenly it dawned on me that I knew this story.  All of it.

Sixty Minutes, The Nolan Twins Part 2It didn’t take long for us to swap numbers and discover a unique friendship that has endured numerous years, ups and downs, stresses, twists and turns.

Alyssa has grown into a beautiful 12 year old girl, who has endured more heartache and hospitals than any child ever should.  She has a gentle nature but can be almost as boisterous as her brothers.

Her mother has always given to others, fundraising and raising awareness of the plight of the hospital, families and patients along the way.  Her knowledge and guidance made our journey a lot easier than it could have been.   I admire her strength and tenacity and feel honoured to consider her a very close friend.

For now though, Alyssa has a wish.  To meet others like her.  It seems like such a simple request and I hope we can help make it happen.

Next year the first ever Families of Conjoined Twins meeting is to be held in Kansas USA.  Alyssa would love to be there.

What can you do to help?

Please share this post.  Or share and like her page on facebook to raise awareness of her plight.  I know a young lady who’d be very very estatic if you did… and a mother who will appreciate the opportunity to finally meet some of the people she has corresponded with and supported as well as been supported by, in person.

And you’ll have my eternal gratitude to boot. 

America for Alyssa

#IBOTing with Essentially Jess again!