Anyone who has ever googled a personal or potential health concern will know how easy it is to spend hours sifting through the labyrinth of information available on the world wide web. At times it can be like a double-edged sword, whilst it is empowering to gain as much knowledge as possible, it can equally be quite confronting and frightening as you read on.

I began to google ‘clubfoot’ when I was 20 weeks pregnant with Chiara, just after her scan confirmed this particular issue.

4 months on, I found myself googling ‘microcephaly’ which lead me down many paths until I got to ‘reduced life expectancy’.. then I stopped…

6 months on, I was googling a new confirmed diagnosis ‘Bilateral Perisylvian Polymicrogyria’.. which seemed even more serious than the Mircocephaly. I recall many a time where the words on the screen became so blurry, I could not make sense of them through my tears. The words I  read, were the sort any mother would want to read, in association with their child.

8 months and a new label arrived, Quadriplegia Cerebral Palsy (means that all four limbs are involved). Cerebral Palsy

‘Restrictions on mobility increase a child’s dependence on caregivers. It can also lead to other health problems, which also impact quality-of-life and life span. Inactivity and lack of exercise can weaken the body and decrease immunity and cognitive function. Some children with cerebral palsy will use more energy to move than a child without cerebral palsy. The result is excessive wear on internal organs, including the heart. In general, the lack of upper extremity function, inability to propel wheelchair, inability to roll over, and inability to creep, crawl or scoot can be areas of concern. Intellectual capability also has a strong relationship to the life expectancy of a child with cerebral palsy. Even in children who do not have cerebral palsy, diminished intellectual function will shorten life expectancy calculation’.. from the CP link above.

On the day of Chiara’ diagnosis, I asked about life expectancy. I was hoping that perhaps Chiara would be an exception to the rule, or that they read her MRI incorrectly or that it was all just a bad dream that I would wake up from, alas I didn’t get the answer I was hoping for. There was a huge amount of information to digest and process, in such a short amount of time. It’s impossible to avoid the topic, it is a very real and tragic event that many mum’s endure in the special needs world, yes the thought scares me. In Western culture, it seems that many people have a hard time confronting death (myself included), which is interesting because everyone knows it is going to happen; immortality doesn’t exist. But you never expect that you will lose your child, and that is the toughest part. Death causes pain, suffering, and fear for many.  Those in the East, especially in Yogic Tradition, see death not as the end of life, but as a continuation of a never-ending process (Sivananda 1999) which opens up a whole new paradigm again..

for now I can’t imagine the unimaginable…

As much as some of my hopes and dreams for Chiara died on the day we were told she was severely brain-injured, there has been such re-birth in the process since. It is profound and whilst I can’t articulate it all right now.. on a deeper level I feel more connected than ever before and more trusting in the process of life. I wonder if it is true, that we choose our parents? And I wonder why Chiara chose us?

Thank you Sivakami for sharing this on your site:

Life is filled with tests. But only lucky people will get tested. What is there to be learned from the experiences that test us? Without difficult experiences, you might have thought that you were a wonderful yogi because there was nothing to disturb you; everything seemed beautiful. Only when adversities come do you have an opportunity to prove what you have learned. Losses are always great eye openers. This is the time to check to see how many things you are attached to. Are you suffering because you lost your possessions? Or are you undisturbed, happy and peaceful? Pleasures never open our eyes. It’s only through pain that we learn our weaknesses. Om Shanti, Shanti, Shanti —Sri Swami Satchidananda

As I was sitting there contemplating all these things, Grace pulled out this card form the Wisdom card deck and handed it to me…

Dreaming of You

Life is a journey in which nothing seems to be permanent. Friends and loved ones move through our lives, often leaving a sense of sadness when we part. Life is forever changing. We cannot physically hold onto anything or control the flow of life. We each have our own path with its own challenges and in order to cope with separation from a loved one, we must realise that there is none. The physical body is but a shell that houses our spirit. On a spiritual level, we are always connected to one another. Neither distance or time can separate that which has been united by love (T. Salerno)

Spot on my little darling Grace, spot on!!

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One comment

  • Diane Roberts March 27, 2015   Reply →

    Life can be short or long, and death is inevitable. It is beautiful to know when our physical body has gone that our spirit lives on.
    While we are still on this plant live life to the fullest! Live the moment!
    Hold onto Hope and believe Mircales do happen!??
    You, Mauro and Grace are giving Chiara the best opportunity! Go Team Chiara!
    Sending lots of love to you all????????

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