About Fall on me, dear

Fall On Me, Dear describes my struggle to survive the unimaginable: the death of my 16-year-old daughter, India from the first reported case of a devastating neurological condition. For ten-years, India was the picture of health. She climbed trees, sang in concerts, and rode around our neighbourhood on her purple bike. Life was perfect. Then suddenly while we were on vacation in Cape Breton, India began to fall down. At first, I attributed it to preadolescent clumsiness, but when she began blanking out it became apparent something was wrong.

For six-years, we lived in limbo, hoping the next medication or neurologist would provide the answer. Meanwhile India’s condition grew increasingly worse. The seizures took over and she lost use of her arms and legs. Still, she was just your average moody sixteen-year old girl who managed somehow despite her limitations to take over four hundred selfies and flip us the finger if we pissed her off. Finally a new DNA test provided the missing link. India was born with a deficiency of an enzyme known as acid ceramidase and it was killing her. Not content to let her die without a fight, we sought the help of a renowned research scientist. It was too late.

There is no name in English for a parent, who loses their child. It’s strange as a writer to find oneself nameless. Often when I tell people India’s story they respond by saying, I Just can’t imagine. I understand this. Before I was bereaved my knowledge of grief was limited. This blog is my attempt to bridge that gap and create a dialogue about loss.

Advertisements

8 thoughts on “About Fall on me, dear”

  1. Hi Lesley,

    I am in awe Of your writing. Your guts. Your honesty. Your daughter. Your passion. This is a fantastic blog. One of the best I’ve seen. Perhaps the best I’ve seen.

    I miss you, my friend.

    Dilys

  2. Hi Lesley,
    You don’t know me but I just read your article in my local rag (The Sydney Morning Herald) albeit I am currently on a break from work helping out a friend in Boulder, Colorado. She is putting together a film festival.

    I just wanted to say how powerful and emotive I found your piece, your writing and your family and India’s story. I wish there was something I could do to help but I am no doctor.

    I am however, insanely interested and have been incredibly assisted in my own minor battle for health by the therapeutic oils produced by Young Living. Some of them have incredible results on the pacification of the nervous system.

    I have no doubt you have investigated every possible avenue but these may assist in some small measure. I found an article attached and am sure there are many others.

    http://mandykrzywonski.blogspot.com/2011/07/living-well-with-epilepsy-part-i.html

    I know it is not a simple diagnosis of epilepsy and hope this does not offend you in the suggestion of it.

    There is also woman called Carla Green in Edmonton who does facial rejuvenation and has a micro current machine that may be able to assist in some small way also. She may be worth a conversation with and is a truly beautiful lady. She has had some incredible results with weird things likes bells palsy. TMJ and infertility – i.e.: not necessarily related to face but to nervous system.
    http://www.secondchanceface.com/

    Anyway, I do not seek to override anything you are doing but it occurred as a long shot possibility and if nothing else, I just wanted to wish you a diagnosis of promise and a recovery to wellness for your beloved daughter.

    I will keep you all in my thoughts and prayers.

    Sending blessings to your family

    Julia

  3. Hi

    Your story really touched me. Keep hanging in there.
    Also just as a suggestion, try looking up alternate healing techniques.
    I would recommend reiki (http://en.wikipedia.org/wiki/Reiki)

    My mum swears by it and it does not cost you much. You can learn reiki yourself and then practice it on your child.

    I hope you don’t see it as an advertising post, but there are so many things that medial science still cant explain.

    Keep the faith.

    • Hi KD,
      We are at present seeing an osteopath. We have tried some energy work with India but not Reiki. Not because I’m not keen but because we were trying other things. I think it’s a good idea. Thank you.

  4. Hi Lesley,
    I was so moved by your article in the Sydney Morning Herald (as previously mentioned). My son was diagnosed with cataplexy almost a year ago & it’s been almost 3 yrs since his first episode – he’s only 6.
    You were able to put into words how I feel – the part of me that wants to scream that it’s not alright & it isn’t meant to achieve any noble ideal – it just is, just because…
    I hope your daughter is able to find something to help her & I pray one day the same for my son. In the meantime I thank you for sharing & helping one mum feel a little less alone & a little more understood.
    Jenn
    (from Sydney, aust)

  5. Hello Lesley,
    I am inspired by you by India and the challenges you overcome with strength and light. You have showed me that humans can be true, loving, giving and selfless. As a mom you inspire me to hug and hold my children with deeper love. As a women you show me that we are fearless. As a soul you confirm to me that there is purity of the spirit despite the harshness of the world. I wish to meet you one day for rarely does such a soul come true.

    • Thank you,Susanne
      I don’t know if I’m that special. I just really, really love my girl. All I ever wanted was her happiness. I think it’s easy to be brave when it’s for someone you adore.

      • You are special. You value the gift of life and having your daughter with you. I am praying for her and in doing so for your family. I wish there was more I could do, as corny as it sounds…God Bless

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s