Ebony Julia Camm b.July 8, 1993 - d.March 14, 2000
Most of what I am about to say is on behalf of Melissa and Peter. There are some reflections of my own. I am sure you will easily work out which is which.
I remember the moment Ebony Julia Camm was born. I was one of a number in an anteroom at the Mercy Hospital. We could hear Melissa yelling in pain, and then there was another loud yell with a different tone to it. My daughter Julia turned to me and said, "I think that was a satisfied yell, dad. I think the child is born."
Melissa remembers it all much more clearly, of course. The labor was long and difficult. But Ebony had arrived, reminding us all of the miracle of life and the wonderful words of Rabindranath Tagore:
But there were worries from the beginning. Five minutes after the birth the attending doctor detected a hole in the heart. It never righted itself, as such things can sometimes do. At the age of three months Ebony went to the Children's Hospital for a check up. In the course of this Dr Goh, a brilliant cardiologist diagnostician. detected that Ebony had primary pulmonary hypertension (high blood pressure of the lung circulatory system). From that moment the Sword of Damocles was over her little head and over ours as well. It was the first episode in her lifelong involvement with the Children's Hospital.
'Where have I come from,
Where did you pick me up?'
The baby asked its mother.
She answered, half-crying, half-laughing,
And clasped the baby to her breast,
'You were hidden in my heart as its desire, my darling.
You were in the dolls of my childhood's games;
in all my hopes and my loves, in my life,
in the life of my mother you have lived.
When in girlhood my heart was opening its petals,
You hovered as a fragrance about it.
Your tender softness bloomed in my youthful limbs,
like a glow in the sky before sunrise.
Heaven's first darling, twin-born with the morning light,
you have floated down the stream of the world's life,
and at last you have arrived in my heart.
As I gaze on your face, mystery overwhelms me;
you who belong to all have become mine.
For fear of losing you I hold you tight to my breast.
What magic has snared the world's treasure in my arms?'
We all hoped that fixing the hole would reverse the pulmonary hypertension. Ebony had the operation to fix the hole which was successful, but Pulmonary Hpertension continued to increase - undetectable from the outside. An incurable condition which could result in death at any day, at any moment. Ebony was born on July 8, 1993 she reached 6 years and 8 months.
Her condition was almost impossible to believe. She was such a normal child. Better than normal really, she was full of bubbly life from the time she was a baby. She was never still for a minute. My boast is that I took more photos of Ebony Julia Camm than anyone else did, mini second. Most of the photos are a study in blurred movement as Ebony shifted ceaselessly from one affected pose to the next.
Peter remembers that she chattered non-stop nonsense long before she could talk. To wake him up she would stick her finger up his nose and say "Blah, Blah, Blah, Blah, Blah."
Ebony fantasised, imagined, dressed up, danced, drew and painted with unbelievable artistry. From an early age she sang songs with perfect pitch and knew every word. She was into the world of Prince and Princesses from the moment she understood the concept.
And Ebony was positive. I credit Melissa with guiding her in a positive path. I remember once telling Melissa that the average child hears the word 'NO' 176 times a day and 'YES' seven times. I could see Melissa was very impressed by this. I think she must have taken notice because in Ebony's first years of life I never heard either parent say 'NO' to hardly anything at all.
I won't say much about her ceaseless play as Marj will be reflecting on that, except to say that Melissa and Peter want to pay tribute to Grandma Marj's committed and studied relationship with Ebony and how much she developed her and taught her.
She was wise beyond her years and extraordinarily compassionate. When she saw the film "Jesus Christ Superstar" for the first time, she wept uncontrollably at the end of the video at what Jesus went through; Melissa had to console her for a long time. The music of the stage play and film resonated with her. It was a film she watched on video hundreds of times. Early on she knew by heart all the words of the songs and astounded the broader Camm family one night by singing word perfect "I don't know how to like him". She knowingly changed the word "love" to "like" for reasons that were never theologically clear to the rest of us.
She was, by the standards of her age, highly intelligent. He original prep teacher Gwen Morrish stated that "you don't teach Ebony anything. She knows it all already."
And from the age of three or so she could cook. She made porridge in the microwave and made her mother toast when she was pregnant with Elijah. I remember being astounded at the Kew home when one day (she would have only been three or four) I saw her cooking spaghetti.
Recently, when she was enjoying one of the few pleasures still allowed her spaghetti bolognaise, always with lots of parmesan cheese, at Dimples in Smith Street, I remarked that the food was taking a while to come. To which she retorted, "They need time to cook it, Poppa, it's not two-minute noodles you know!"
I recall another story from the Kew time, which will amuse most of you. Melissa and Peter were having a husband/wife altercation of some kind when in the middle of the argument they looked down to see Ebony banging her fists on the floor. When they asked her what was the matter she said despairingly, "I don't know. You two will never live happily ever after."
And once when Melissa was sounding off at Peter she interposed: "God made Daddy too, Mummy!"
Peter and Melissa did split up, as we all know, but a tribute I would like to pay is that they both loved their daughter so much that they stayed as friendly and as civilised as possible, equally sharing the responsibility of her upbringing, and her illness. During her many stays at the Children's Hospital she was never left alone. One parent or another was always there by their daughter's side. They have both been wonderful parents on a day to day basis.
And the relationship was precious and special. Melissa always felt Ebony was her best friend and companion as well as a daughter, and Peter felt she was a mate. When either one was upset she would always respond with words of comfort and speak to them with a wisdom beyond her years.
Who will ever forget unkempt-hair, blood-shot-eyed Peter after all night on the Internet following through every doctor in America who had ever treated Pulmonary Hypertension and everyone who ever suffered from it. Who will ever forget the battle through the Sunday Herald Sun, with the bean counters at the Children's Hospital and even premier Jeff Kennett himself.
So in the end Ebony got Prostacyclin and even if it did not do her as much good as we hoped, I am told, on the best authority, that two other children on this drug have improved, and we all know that this innovative but crude treatment, in time, will be refined and improved. And it will have all begun because of Ebony Camm, her parents, and those doctors who backed them.
Though blessed with the wonderful medical attention of firstly, Dr Goh, but more fully later of Michelle Rose and Dr Weintraub, Ebony had to face many fearful, painful, uncomfortable and sometimes very intrusive procedures at the Children's Hospital. She endured them, and faced them all with an admirable courage which impressed everyone. They never defeated her. The staff in intensive care were astounded at her irrepressible energy, her laughter, her devouring of the videos, and her endless conversation. She had a wonderful sense of humour, and a sense of fun.
I'm talking of her life up to about four months before she died when the disease had stopped her walking, swimming and singing. She smiled less and laughed less and at times wept in pain. When she was so seriously ill and she pushed everyone away except her mother, Lyn and John came from Byron Bay and were able to get through to her and make her laugh. When they lived in Melbourne she loved to go to Grandma Lynnie's and Granpa John's to stay and hopefully get to play with kissing cousin Ben.
But back to the end she stayed well groomed, with a pride in her appearance. She would not go up the street, even in the wheelchair, unless her hair was fixed, and she was wearing a pretty dress.
She was a very spiritual little person. She would write her own beautiful prayers. Her mother always felt she had a higher power looking after her.
Her favourite period of Childcare was the Torquay kinder with Bernie and Trina and the kids there, who continued to love and support her.
Her special friends were Tara from Torquay, and Georgina, Jessie, Matilda and others at the Erasmus School, such a special school with such special people. She got through one year of school.
Though as a personal trait she was very much a one-to-one person, she relished the broader family. Three Poppas, two Grandmas, Aunts Lorraine, Christine, Rachel, Genevieve, Tasha, Anna, Julia, Carla, and godfather Jake. And uncles Russell, Steve and Jim, cousins Ben and Steph, Laura and Mitchell, Sarah and Paul. At her father's home she had stepbrother Gabriel and his cousin Christo, mate Susan and stepmother, Belinda. And then there was Prasham and her little brother Elijah, even if she did sometimes wish he were just a photo. You friends who have come together here today. We are so grateful for your love and support. The sharp edge of this cruel tragedy of nature is softened by your presence. Most of you were and are part of Ebony's family too.
Melissa and Peter have so many more memories of their stunningly beautiful little daughter. Only in the last few months did she ever look ill. Such a feminine person. From the moment she could crawl she was into her mother's make-up, her jewelry, her scarves, her hats, and her underwear and it never stopped from there. They recall, for example, the wonderful time in Disneyland provided by the Starlight Foundation. They both believe that Ebony has changed their lives. She entered their worlds and challenged them, shape up or ship out style, to be the best kind of people they could be. Either of them would have died for her.
So, it seems to me Melissa and Peter; it is as if Ebony came to you from another plane to bring out the best in you, to reassure you that you can love, that you are truly loveable, that one little person loved you more than anyone else in the whole world. She was sent to show you that you can do something really well, that you can be somebody really wonderful a mother, a father. Now that she has accomplished her task she has gone back to where she came from.
Ebony was always a princess. 'Come and play, Grandma' she would say. 'Let's play Cinderella - Sleeping Beauty - I know, how about Snow White?' and I would know I was in for hours of play.
Of course, Ebony was producer, director and star.
'Now, Grandma, you be the wicked queen, the woodsman, the seven dwarfs and the prince. I'll be the - Princess.'
Out would come the costume and the tiara; Ebbie would wriggle into her favourite dress up, brush her hair and put the tiara in place, put on her lipstick and blusher and the game would begin.
Her favourite part of the story was where Snow White took a bite of the poison apple. Here Ebony would fall dramatically to the ground and lay there until I, on my white horse, rode up, dismounted and leant down to kiss her on the cheek.
She would slowly wake and stretch then jump up and say, 'Can we play it again?' - and again - and again. Eventually she tired of playing the whole story and edited it until all we played was the part where she ate the poisoned apple, died and was kissed by the prince. When this began to pall she said one day, Grandma, I want you to stab me.
"Ebbie,' I exclaimed in horror.' 'I don't want to play stabbing you.'
She looked at me as if she must be patient with this child and said, 'Grandma, it's only a game.'
There is so much to tell, of course, sad and happy anecdotes. But even the sad, at times, made me laugh. Ebony had not long come out of hospital after having the catheter inserted and I was taking her to the video shop. She was not too happy still about this intrusion into her body and life, and while in hospital would frequently express her anger by playing up when given various tests.
Grandma, I hate hospital, I hate having this cassette to carry everywhere. I want to go to heaven now.'
Then she must have thought better of going to heaven now and added,
'When I go to the hosptial next week to get my finger prick, I'm going to scream!'
A couple of weeks ago when Ebony was watching Mary Poppins, the conversation between us went like this:
'Grandma, Does Mary Poppins have false teeth?'
'No, I don't think so.' .
'What do false teeth look like?'
'Well, they're very white and very straight looking.'
'How do they stay in?'
'Suction sort of keeps them glued to the roof of the mouth.'
'Do they ever move or fall down?'
'Well, sometimes when you're very old they can do that.'
'Then I added, 'Gee, I hope that doesn't happen to me when I'm very old.'
'Never!' replied Ebbie. 'You'll be dead! You're very old now!'
That was Ebony.
Genevieve: Meditation for Ebony
I invite you all on a meditative journey for Ebony. You might want to close your eyes and take your mind to a peaceful place. Visualise Ebony in this peaceful place of beauty filled with trees, flowers, butterflies and rainbows.
Feel the love that resides in your heart and send love and joy to her in celebration of her life on earth. You can give a message of thanks for knowing her, and find a moment to say to her anything that was left unsaid.
Now you can reflect on the special times, the good times you spent with her.
Now imagine a light coming from God/Source streaming down and bathing her in light and see her lifting up to God's Light; her spirit being purified in the light as we let her go, knowing she has lived life to the full and learned all she needed in this incarnation.
When you feel the sadness and pain of missing Ebony remember you can always visit her in this way until the sadness and pain dissolves in Grace and all is healed.
Ebony, your life we honor.
Your departure we accept.
Your memory we cherish.
Ebony we let you go for all there is in the end is love.
I was going to read a poem in memory of Ebony, but I have decided that it would be more appropriate to share with you a few memories I have of the times I shared with Ebony.
It was also part of my Auntie's responsibility to take Ebby to the movies and for awhile it became quite a regular outing. I got great pleasure in taking Eb and looked forward to these outings just as much as she did, except for one occasion. This time Eb wanted to see the Wiggles movie. I remember Eb sitting on my knee watching the movie intently while I wearily rested my head on her back; she seemed to be enjoying it but all I remember doing was constantly looking at my watch hoping that it would only be an hour long feature and silently cursing the fact that it went for one and a half hours.
I first lived with Melissa and Ebony at our house in Kew. Ebony was 2 and a 1/2 year's old at the time. As we all know Ebony was passionate about Disney cartoons and I have a lovely memory of Melissa and I, highly amused watching Ebony out the front window walking up and down Ridgeway avenue, while Peter fixed something on the car, singing a Disney love song while dressed in one of Melissa's old ballet costumes. Ebony was completely lost in the magic of the song and oblivious to any curious onlookers who might have been passing by.
I recall another time when we moved to the Doncaster house. Ebony had been watching Jesus Christ Superstar for probably only the 1000th time and was dancing in the loungeroom to the soundtrack cd. She was twirling around with Melissa's framed picture of Jesus clutched to her chest singing I Don't Know How to Love Him when I walked in. I was a bit worried that Eb might drop the painting and suggested that she should put it down, to which she looked at me in horror and clutched the picture tighter to her bosom and shouted Noooo!!!! I decided that I better not interfere and retreated quietly.
At the Doncaster house, I lived in a big room at the back of the house and because I worked at Foxtel I was entitled to free cable t.v. As we all know Ebby loved her t.v. and she was in heaven with the cartoon channel being on 24 hours a day. Every day I would come home to find Ebby sitting in my room watching cartoons with her dirty socks and stale sandwiches lying around, it used to drive me crazy!
One of my most treasured memories was after Christmas 1998, I was given a pair of cheap sunglasses. I already had a pair so I asked Eb who was sitting in my room at the time, if she would like to have them. She asked if I meant that she could keep them and I responded that she could. At that point she stopped and looked at me intently and said "You really love me don't you?" and I said "Yes Eb, of course I do."
I will always treasure the time I got to spend with Ebony and she will forever be remembered. I consider it an honour and a privilege to have been her Aunty and will miss her deeply. It will be my legacy to her to let her brother Elijah know what a wonderful big sister he had.
As your grandmother told us, when you were a little girl you used to play out the Story of the Sleeping Beauty. You played it so often. You would pretend to receive the deadly prick from the spindle on your finger and you would then pretend to die. Then you would get up and play it all again.
It was the story of the Princess who died for 100 years.
And then one day a handsome prince came along and kissed you and you woke up and the entire kingdom woke up with you.
This is my hope - that one day that prince will come and kiss you and we will all wake up with you.
Fly, fly little one
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love.
Past the planets and the stars,
Leave this lonely world of ours.
Escape the sorrow and the pain,
And fly again.
Fly, fly precious one,
Your endless journey has begun.
Take your gentle happiness
Far too beautiful for this.
Cross over to the other shore,
There is peace for evermore.
But hold this memory bittersweet
Until we meet.
Fly, fly, do not fear
Don't waste a breath, don't shed a tear.
Your heart is pure, your soul is free.
Be on your way, don't wait for me.
Above the universe you'll climb,
On beyond the hands of time.
The moon will rise, the sun will set.
But,we won't forget.
Fly, fly little wing.
Fly, where only angels sing.
Fly away, the time is right.