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Life story
October 31, 2006
Passed away on October 31, 2006
January 18, 2007
Eulogy for my beautiful Madeleine Claire
Her clock determined that she came into the world 3-4 weeks early, a little 5 lb thing struggling to learn things newborns had on tap. And pretty much chaos ruled from then. Life with Maddy has often been continuous lurching from chaos to chaos as she and we took on the rigors of dealing with her complex needs. But along the way we learnt that connecting with Madeleine was an intense and profoundly dynamic relationship. Note the silver foil you all have. The silver foil was a constant companion which she used as visual stimulation, to pull herself out of seizures and to tease Chris her brother! It is our connection to Madeleine today. Connections make our meaning in life so wave that silver foil for Maddy!
So how did people connect with Madeleine?
Blood Connections: Wave that silver foil.
Since the end of 2004 when I could no longer care for Maddy and Chris full time due to my own failing health, they have been with their father. Maddy was always a ‘Daddy’s Girl’ and would light up every time she ever heard her dad’s voice and so it gives me a sense of peace to know that she was in his loving hands in the end. He has been a tremendously dedicated father and I always knew she was safe with him.
Christopher that big man over there, always wanted what Maddy had and she delighted in teasing him with her things. She would wickedly laugh if he got into trouble too for wanting her stuff. However, they called out to each other in the morning early and he would always listen for her and watch for her and giggle whenever he heard her. But I think that he needed her a lot more than Maddy needed a little brother around… she was quite secure in herself I suspect.
Simone believes her sister to have political intelligence as we often would observe a new carer struggle with trying to give Maddy food and Maddy would steadfastly refuse to eat and smile at the carer and giggle at the distress she was causing! Simone’s connection to Madeleine is as a musical critic to a musician; Madeleine as a critic and Simone as the poor struggling musician. But the thing about Maddy is that she was also Simone’s greatest fan. She and Simone share their Dad’s passion for music.
However, when Simone was little she used to refer to her brother and sister as electric instead of epileptic brother and sister and really I think electric is a good word to describe Maddy’s personality. When she was pugged in she really lit up!
From me I think what connect and meaning Madeleine gave me was about so many thinks
- Unconditional love
- To fight hard for what is just and the rights of people with disability
- I learnt to watch, listen and to observe acutely to her every breath for her communication to me. She was the tic and toc of a life where getting up at least 3 times a night for 18 years to turn her so that she was comfortable was like living in twilight zone but normal. Her father has had that pleasure of that particular twilight zone for the past 2 years.
I can remember the times when she slept the Madeleine time table – that is, 12 noon go to sleep and 12 midnight get up as somebody is throwing a party. I then would get up and say loudly: ‘Madeleine for heavens sake go to sleep!’ and shw would giggle.
Friends/carer and support connections: Wave that silver foil
Many years ago a little girl in the street cam to visit as part of her care and concern for her school. She cam for years every Friday almost without fail and astounded me with her insight and acceptance and real friendship to us as a family. The first Christmas she bought the kids satin pillow cases so that their hair would not become matted and look lovely!
Many in our life have been there as paid support but have become friends as well.
How can you work for a human services industry and not become involved? Maddy has had some carers for 10 year block and still in contact. I think that often vulnerability in others reminds us of our own humanity. Thank you for your connection and gifts of your humanity to Madeleine.
Especially I needed to say at this point the male carer population of Cascade Place which I am sure she enjoyed! Madeleine was a bit too connected to the male voice I must say.
Madeleine’s connection to us: Wave that silver foil
According to the Big G (Granny) – she liked her granny. Madeleine was the only grandchild who was a captive audience to the big G! However the truth is that Madeleine really loved to be an audience and the party.
She just loved people.
She loved babies and little children.
She would shop until you dropped and would squeal in a blood curdling manner and stick her legs out stiffly in a statement of pure joy when she went shopping.
She loved noise and commotion.
She was passionate about music – Bob Marley being a latest favourite.
She adored milk shakes and cheese cake and eating sweet things mostly.
She loved girly sessions and having hair done and especially to be told she looked beautiful.
She loved perfume.
She loved riding in cars and going somewhere- and bumpy roads in particular.
She loved to be roughed up (as much as you could for her fragile frame) in mock wrestle sessions.
She loved the rim of her ear being tickled.
She had one of the most determined personalities and had a talent for letting people know what she did not like quite volubly.
Wave that silver foil…..
Conclusion:
We all connected to her in so many diverse ways and she to us. Twenty years of joy in a unique human being and a unique perception of life.
As she chose to come into this world early so too she with her end.
I think maybe we have all learnt more from Madeleine that she has from us.
Maddy’e Dad has written something for her that conludes this part of our eulogy and celebration:
It goes:
Madeleine, my little princess, my beautiful butterfly
Your eyes taught me everything I needed to know about love
Your smile lit up the earth and the sky above
I loved the way you screamed and shouted
I loved the way our jumped about
I loved the way you laughed and cried
I loved the way you filled my life
So fly my little butterfly
Unhindered
Unharnessed
Unshackled
Feel the wind beneath your wings
And enjoy the freedom
I will miss you terribly but you will live in my heart till the day I die
Dad
May 27, 2007
Born in Australia Brisbane on May 27, 1986.
2008