T'was a Tuesday When The World Ended

Have you ever experienced that one moment where the whole world just stops? If you have, you know what I'm talking about... the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it's beating so loudly it's drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words...

For me, those words were 'Costello Syndrome'.

This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.

It still seems so hard to comprehend. I fell like I'm in an emotional train wreck.

Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!

When you have a child, your heart gets filled with all these hopes and dreams... you hope that your child grows up and does well in life... that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.

With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up... that she will be one of the lucky ones who doesn't have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence.

All of a sudden, I'm playing a new and different game... the problem is, no one has told me the rules.

Our world is filled with medications and specialists and trips to the hospital... something as simple as running to the shop for a loaf of bread has become a mission that must be planned so precisely so as to ensure minimum imact on her life that it's generally easier to just not bother and give the other girls crackers instead!

'Normal' families have a linen closet that is filled with linen! Ours is packed with entereal feeding pump bags, syringes, tapes, papers, specialist prescription formula, and all manner of medical supplies.

Recently my parents were visting with us for Mother's Day, and my Mum was the lucky one who got to do the CECU (Clinical Equipmenent & Consumables Unit) and Pharmacy run with me to get Nicola's monthly supplies and she was absolutely astounded at how much stuff I take home every month... and even then, I generally end up ordering more from a third party supplier because we generally don't end up with enough to get us through.

Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can't help but think about how much easier that life was... how much less stressful...

But then I look at Nicola, and she gives me that beautiful little smile of hers... and I know in my heart that I wouldn't change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can... the life that she deserves to be living!

After all, the rules don't matter. Rules are made to be broken.