Confronting The Truth

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, that she won’t live a life of pain and suffering, that she won’t suffer in some horrible way.

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

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.

___________________________

That was the (slightly modified) entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw… something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can’t recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong…

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time… I find myself wondering…

But oddly enough, now, only 6 weeks later, I can’t imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don’t mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible… and she has taught me how to fight, not just for her, but for everyone else that is just like her… and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings… a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn’t ended.

There are so many beginnings and so many endings… there are so many chapters in this story…

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I’m sharing all of this now is because today has been one of ‘those’ days…

One of those days where everything is just all too hard. I don’t want to deal with the truth, I don’t want to deal with the doctors, I don’t want to deal with the medical stuff… I just want one moment of normalcy in my life…

Tonight when I was doing Nicola’s speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it…

In the midst of all of the frustration and the confrontation…

As if she knew that tonight I needed it the most… my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw… I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)…

My heart will still break when she cries in pain… and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes…

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better… I will still fight for her, and for every other person out there like her…

But now I can look forward to being surprised by silly little normal things as well.

Looking Forward, Looking Back.

Looking back on the entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw... something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can't recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong...

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time... I find myself wondering...

But oddly enough, now, only 6 weeks later, I can't imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don't mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible... and she has taught me how to fight, not just for her, but for everyone else that is just like her... and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings... a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn't ended.

There are so many beginnings and so many endings... there are so many chapters in this story...

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I'm sharing all of this now is because today has been one of 'those' days...

One of those days where everything is just all too hard. I don't want to deal with the truth, I don't want to deal with the doctors, I don't want to deal with the medical stuff... I just want one moment of normalcy in my life...

Tonight when I was doing Nicola's speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it...

In the midst of all of the frustration and the confrontation...

As if she knew that tonight I needed it the most... my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw... I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)...

My heart will still break when she cries in pain... and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes...

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better... I will still fight for her, and for every other person out there like her...

But now I can look forward to being surprised by silly little normal things as well.

And So... It Begins...

It has been 4 weeks since the hospital received Nicola's test results. In that time, they haven't bothered to contact us at all, not even to give us the diagnosis.

So how did we find out about this horrible monster invading our precious little one's life?

Nicola was admitted to a different hospital for a scheduled heart procedure. She needed a cardiac catheter and a balloon catheter for her pulmonary stenosis. It was a bit of a hair raising procedure, but when we were sitting in the critical care unit, hours after she had come out of the operating theater, a doctor I had met for all of 5 minutes handed me a piece of paper and told me that my daughter had Costello Syndrome.

That was when he walked away and left me.

It seems that HE had access to the information that I had specifically requested to only be available to my husband and I until we had had some time to work through it emotionally.

I can't even begin to express on how many different levels this toys with my emotions.

I feel hurt that my daughters privacy was violated in this way, especially after we made specific requests as to how the results were to be handled.

I feel frustration that to all outward appearances, the medical staff we have been dealing with for the past 8 months are no more inclined to help now than they have been for the past 8 months...

And I feel anger.

I am angry that we got this diagnosis.

I am angry that they didn't tell me.

I am angry at the way they told me.

I am angry that they have made no effort at all as to her medical care.

In late March they told us that they would schedule Nicola in for a PEG within 4 weeks. We still haven't been given a date.

Two weeks ago I was told that Nicola would be scheduled for a gastro review within two weeks. I rang them today to chase it up again. Apparently it was forgotten.

Our pediatrician advised the staff at the Mater last week that they would schedule an appointment for us for this week.

We have heard nothing.

It seems as though the only way that we get any assistance from them at all is from me fighting and yelling and shouting and threatening and making a scene.

Don't get me wrong, I will continue to do so as long as it is necessary... but I just wish that she could get the proper medical care that she needs, without me having to fight so damn hard for it.

Unfortunately, there is no other hospital around better suited to our needs.

It makes me so sad, it really does.

Nicola is only 8 months old, she is a precious little baby... she shouldn't be going through all of this.

We made the decision today that we want to go to the Costello Conference in San Francisco in July. We think it's something important for us to do. Given that we are the ones that have to fight for Nicola's care, we need to know what to fight for, and that is going to be the best way to find out.

Hopefully this will be the start to making a HUGE difference in her little life!

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.