Alyssa’s Dream


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 8-) ) 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 2
It 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!

27 comments

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Leanne @ Deep Fried Fruit (5 years ago)

Wow! That’s an amazing story. Will share on DFF Facebook today :)
Leanne @ Deep Fried Fruit
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    CJ (5 years ago)

    Thank you Leanne, every little bit helps! xxx

Lydia C. Lee (5 years ago)

Wow – what a story. Hospitals are so random, who you get thrown in with, and what friendships can be made. I hope she makes it to the US
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    CJ (5 years ago)

    Very true Lydia, those people feature strongly in my life, even today. We will do everything we can to help Alyssa realise her dream. xxx

Aroha @ Colours of Sunset (5 years ago)

Have just liked and shared the FB page. I hope they get to go and meet others who are just like them. No one can understand like others who have been through exactly the same. Very touching story, thank you for sharing.
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    CJ (5 years ago)

    Thank you A! Much appreciated. Let’s use social media to Alyssa’s advantage! ;) x

Rhianna (5 years ago)

That is eerie about the names, and lovely at the same time. I will share the page wide and far as well.
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    CJ (5 years ago)

    Those butterflies were watching over us I believe Rhianna! Thank you! xxx

Renee at Mummy, Wife, Me (5 years ago)

Thank you for sharing this story. I have liked Alyssa’s page and shared it on my personal FB page. I will throw as much support behind it as I can.
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    CJ (5 years ago)

    Thanks Renee! Much appreciated! :) x

Lisa@RandomActsOfZen (5 years ago)

Have just shared on both my FB pages Carmen, such a brave little girl and a wonderful mama.
The nurses at The Royal Children’s helped us a lot too, they’re amazing xx
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    CJ (5 years ago)

    Thank you so much Lisa! The staff at the RCH are part of our extended family by default these days… they’ve watched each of my babies grow up! xx

Emily @ Have a laugh on me (5 years ago)

Hey girl, I have posted on my personal FB and blog FB page and tagged a good friend at the Courier Mail and other journos. I hope someone picks it up.
I shed a tear when reading that, got goosebumps, what an incredible journey she is going through. I hope people power can get her there. xx Em
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    CJ (5 years ago)

    Em, love your guts girl! So grateful for your support too! xxXOoo

Debyl1 (5 years ago)

Such an amazing story.
Sometimes the universe sends us just what we need even though we may not know it at the time.x

    CJ (5 years ago)

    That is true Deby! Here’s hoping Alyssa gets what she really needs too! xxXOoo

EssentiallyJess (5 years ago)

What an incredible story. Who would have thought you would pick names like that? It’s like you were meant to be friends.
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    CJ (5 years ago)

    It was an eerie coincidence Jess… one that certainly wasn’t lost on the both of us. We are friends for life I think. :) xxx

Mary (5 years ago)

Miss Carmen, again you reduce me to tears. I still recall the first day I saw you and Calen. Your boy so very ill and you, heavily pregnant with that deer in the headlights look of a new hospital mum. I recall it because I remembered that it wasn’t so long ago, only 7 short months that I had felt exactly the same way. Not knowing the future, the routine, wondering what was next, and, unlike us now, how the system worked. :) My hear went out to you and I just wanted to tell you that you were going to be ok, you’re never alone, we ‘frequent flyer’ parents stick together. At that moment I thought of what I could give you, never knowing just how much you would give me – your firendship, your support, your love, your laughter and most importantly, you. Unique, quirky, special you. You have been a gift to my life and have always been my champion – I am so blessed to call you my friend. xxx

    CJ (5 years ago)

    Just love, lots of it, more strength… and now we need to find you both some wings. Working on it. ;) xxXOoo

Josefa @always Josefa (5 years ago)

What a powerful and heartbreaking story, thank you sharing x
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    CJ (5 years ago)

    Thanks for stopping by Josefa! xxx

Bronnie (5 years ago)

Wow, your post gave me goosebumps. Of course she wants to meet others like her. How fab would it be to make this happens. Well, you know I am a journalist, and I write for women’s magazines sometimes. I am sure they have done loads of stories before and know how it works. If they would like to do a story about this, they would make some money to help get Alyssia there, and attract more attention to their cause. I think it would be wonderful to document her journey too. PM or email me if they are interested, I would be honoured to help. There are several ways we could do this too.

    CJ (5 years ago)

    You ROCK thanks Bron! xx

Trish (5 years ago)

I shared in a few places. A friend of mine is a very good friend of Alyssa’s mum Mary – small world.
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    CJ (5 years ago)

    Awesome thanks Trish, I think it’s another of those freaky coincidences. Mary and I are fairly used to them these days. ;) xxXOoo

Vanessa (5 years ago)

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