Our Journey

I am Alex, the father of a beautiful baby daughter with Sandhoff Disease, a rare form of Lysosomal storage disease, similar to the Leukodystrophy in Lorenzo's Oil (the movie). Artemissia was the only known case in Australia. At 6 months old the first signs of this aggressive disease began to emerge. We went to the doctors thinking it was a reaction to immunisation but no-one knew. We waited to see a neurologist but the disease was advancing. One day before her 1st birthday she went floppy. Our nightmare had begun, and even though Artemissia passed away more than 2 years later on the 13th of December 2010, the nightmare continues today. A family no more. Here you see a father's journal, emotions and thoughts. barely a glimpse of the reality, but enough.

Monday, May 30, 2011

Good week, and rewarding

Artemissia and I had a good week, and rewarding. Meeting with Dr. Anthony Herbert and his team at the Royal Children's Hospital in Brisbane was great. Anthony has always been close and has been trying to help us from the beginning. Our friend Leigh the Bereavement Co-ordinator was also there with another lady on Anthony's team. We discussed some of the challenges we had faced with Artemissia and offered suggestions which may make life easier for others who will be taking the journey. Awareness, Early Diagnosis, and Information along with Family Advocacy, good Support and regular Respite were some of the areas. DOCS as usual failed. So we need to look at what could've been done in our case and try to make that happen and work for others. It won't happen overnight but it will.

It's so hard, when Artemissia and I walked into the hospital, especially the ward where Anthony works, yep! the Banksia ward is full of children and babies, most with terminal conditions. The nurses and doctors there are fantastic, everyone is mufti or in costume, the kids love it and it is a very happy healing atmosphere. Had to let a few tears go, it rips me apart to see so many of Artemissia's friends. Tiny Dancer twirled around spreading her aura of love and comfort to all there, Artemissia reached out from our heart, it hurt us both, and reinforced my knowing that something will always hurt.
We will make change and save others from experiencing all this.

Wednesday, May 25, 2011

A beautiful place to be

It's 9 o'clock and our Artemissia is resting, tucked in all nice and warm. Big day tomorrow. No rain today, just sunny with the cold winter southerlies whipping up. Artemissia and I took our daily path to be by her side. It is such a beautiful place to be. Eviron botanical cemetary is being landscaped anew and we donated 200 frangipani trees, of different varieties and colour. Artemissia and I couldn't resist, we can look after them together. Next year the flower show will be fantastic, all Artemissia's new friends will have frangipani flowers everywhere. We can't wait till october. The little angels were all bubbling with happiness.

Such a strange feeling, to go from one extreme to another. To have a family, a life, someone to fight for, then............... I'm still on alert, brain racing, heart lost in a desert.
Who am I? Where am I? Where do I go? What do I do?
I'll figure it out. Just have to see what's next hey!

Monday, May 23, 2011

Bob - An amazing man

It's been such a big week for us. Tiny Dancer had an accident and broke her hand. I have been researching to find a treatment to help heal the injury. We thought that "Supa glue" may have helped with it's "special healing" qualities but it didn't. Aunty Julia has found a miracle cure that has worked before so we will get a script and Tiny Dancer will be together again.

Our friend Hanson has moved to another position further away so last night Artemissia and I attended our first class of Lauren Tober's Yoga Meditation course that is intended to help people like myself. It was good and I hope it can help me to focus and pull the pieces of life back together. Artemissia loved it and met some really nice people.
It must have done something good because I am able to speak to you now.

This week we are travelling up to the Royal Children's Hospital in Brisbane to meet with one of Australia's leading Palliative Care specialists Dr. Anthony Herbert. Anthony is a really good person who helped us as much as he could with Artemissia. Unfortunately he is over the border in Queensland, distance and that invisible line made everything 100 times harder. Anthony has offered to help us in our fight for more awareness, information and support for patients and families affected by the Rare and Orphan diseases.
This will be my true healing, to help at least one more child and their family.
No-one should have to go through what we went through in this 1st world country.

In the words of Bob Wyborn from the ALD support group; "Artemissia is totally reliant on her parents who give her 24/7 love, medical teatments, feeds, physio, etc, etc. Of all the families I deal with in Queensland this is the one that is the most disadvantaged I implore you to consider this application with favour and give this family the great gift of hope and love".
What an amazing man Bob is, Bob lost his son Brendan in 1999 to Adrenoleukodystrophy. Ever since then Bob has dedicated his life to helping others. We were over the border in NSW and Bob would travel down 100's of klm to visit, bearing nappies and goodwill.
Advocating for us with total understanding.
Artemissia and I hope to be able follow in the footsteps of Bob and dedicate our lives like him.

Thursday, May 19, 2011

You Can Do It!




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Artemissia's amazing love, understanding, strength and determination to live against all odds are traits seen in all these children, they know! "Born to die". Like someone's idea of a sick joke! These purest of hearts, need only love and nurturing. They understand everything, know everyone, giving all they have unconditionally, instinctively. You get to see into their souls, this privilege freely given. I know, I learnt sitting alongside Artemissia, doing all that we did to keep our baby alive, shift after shift, day after day, night after night, then laying in the next room, ears tuned to Artemissia's breathing and equipment, ready for the next emergency. I learnt how incredibly dependant, fragile and loving our children are. Tiny little hands reaching out only wanting to wrap around and console my fingers, knowing. Artemissia is my lesson. My most beautiful lesson.

Tuesday, May 17, 2011

"After Party"

Artemissia just loved the plaque, so much so that we had to have an "after party". The guitar got a good working over and our Tiny Dancer danced, and whirled, and twirled, such an incredible girl.
Then Artemissia sat by my side on the grass, looked into my heart, and said:
"Dad, can you please thank everyone that helped us with my beautiful plaque and funeral ceremony.
Please thank Aiden and Oscar, they saved their pocket money to get me a christmas present. I had to leave early so they still put it towards my plaque, very cool kids hey! Dad, thank and hug uncle Charles, aunty Tammy, Yasmin(my big sister), cousin Dimitri, aunty Julia and uncle Terry, aunty Anne, uncle Mario, aunty Jade(Yasmin's mum), uncle Dave, Ben, Uli, Jutta, Jony, Jo, Nick, Bob, father Romanus and everyone else that helped and cared. Let everyone know that I have met many others here, just like me, we are all blessed and my new friends are so special. I love them all and you will meet them all one day.
Now Dad I have to dance and whirl, and twirl some more, this is so much fun."

Monday, May 16, 2011

How beautiful is that!

What a great week it's been. Artemissia's plaque was laid. What a mission. Never could I have imagined how hard it was to find few short words to sum up my child's life, in stone. This my duty. I had holes drilled around the sides and bottom to place flowers into. The top white is an Evergreen engraved to blossom through winter and forever.
Along with the Paua shell frangipani and the beautiful flowers sewn by Aunty Julia that she has sent us we can both relax and be happy that Artemissia has the most beautiful "Lei" of frangipani flowers an angel could ever want. Really in heaven. How do you find the words to express the millions of thoughts and emotions, your love, your pain, your loneliness and grief.

Impossible... words could never do. How do I tell Artemissia how much, we, everyone and I feel. Impossible...

Monday, May 9, 2011

When's Father's Day?

Yesterday seeing Mother's Day from the eyes of a father was so good. For so many fantastic mothers, mothers playing with their children, or nursing their children, mothers with children that are dying, mothers whose children are gone. All mothers have the most incredible bond with their children. Mother's day can open the heart to supreme happiness or searing pain. Bring laughter or tears. We celebrate it to honour all mothers and thank them for their enduring motherhood. We simply wouldn't be here if it wasn't for them. As men we spare a thought for our own mums and crave childhood. Now I'm raving but it's true. Mum it's true, I LOVE YOU. Just like Artemissia, blind and paralyzed, Artemissia loved her mum unconditionally. All our special children just love their mums. It's the 6th, 7th, 8th, 9th or 10th sense. That's what makes Mother's Day so special. I have read and cried over so many beautiful quotes and odes shared between selfless mothers of special children, thank you ladies. See you all next year.
P.S. When's Father's Day?

Thursday, May 5, 2011

Tears of blindness

The days fly by like dragonflies in autumn, each one a blur, now you see it then it is gone. Kneeling by your grass mat, above Mother Earth's embrace, look at each green blade, see your smile in each and summon all my strength.
I see myself shattering into billions of tiny specs, just like the universe and your stars. Some specks to be borne everywhere with you, others to be washed down through the mud to rest with you. How sweet the thought, to embrace your soul for eternity.
Thus it will be, we will be one when my journey is done.
Like the precious tears of blindness you blessed us with. When they came I would gently wipe them away with my finger tips and touch them to my lips, fused for all time, through all space.
Your little friends stand silently by your side, an army of angels, we feel the power and glowing love they send us. They understand, they are here to.

Wednesday, May 4, 2011

How can we teach them?

We have been so busy sweetheart, together we drove up the coast yesterday. First we stopped to bring your frangipani flowers, played with you awhile, then visited our friend Dave, worked on the car. After that we drove further to stay at Bob's place. There Bob our mate from the Leukodystrophy Support Group helped us with the beginings of your foundation website. Bob understands, Brendan his son is one of your friends and we know you both are good mates now. In the morning we drove back home and got ready for our day. While I was sitting on the verandah drinking my coffee a man walked by pushing a pram. He stopped and loudly yelled behind him. I saw a little girl just like you, running to keep up. We both felt so sad for him. I cried. Doesn't he understand how precious you all are? How could we teach him? Explain our pain. My heart was shattered. He looked up and saw us then changed his voice and moved on, his daughter running behind. He doesn't know the treasure he has.
We visited Hanson, he helps us with our pain and understood what we saw and felt. We stopped and picked some more frangipanis for you. They always soothe your soul so much.
Feeling a need to visit our empty house, a world long gone but full of echoes. Inside right where your bed used to be we laid out your t-shirt for you to sit on and play amongst your flowers. I sat on the floor next to you reflecting on all we had seen. Memories bouncing off bare walls. Later you and I came to you and played on your grass with all the other gumnut babies. We watched the sun setting behind your mountains and slowly drove home, watching everyone buzzing by. Now you're in bed all snuggled up and warm. I kiss your eyes and you drift off to sleep in a world full of little angels and fairies, surrounded by love and peace.
Rest my angel, tomorrow is another day.

Monday, May 2, 2011

All fixed

All fixed, what a great toy hey! It's been going and going. Now it'll be fine again for ages. Have all the fun you want princess. You can have a sunset party everyday, make all the noise you like, and beat me home all in one. Talk about extremes. Sunday was a pretty nice day at Byron and so many of your friends there asked about you. They're really happy and understand. We are very lucky to have so many wonderful mates. You always won everyone that met you, touched hearts, such a special breed you are one of the 'silent angels'. So many, yet so few!

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Sunday, May 1, 2011

Flower on the water

To hear your voice, to see you smile
To sit and talk to you a while
To be together the same old way
That would be our greatest wish today

To hear you laugh, to hear you cry
Or just a chance to say 'Goodbye'
To say the things we couldn't say
That would be our greatest wish today

But all we can do is throw a frangipani on the water
Look for the sun through the rain
Lay a little frangipani gentle on the water
Remember how we loved you

To comb your hair, to lace your shoes
Buy some flowers, let you choose
A phone call when you're away
Just to see if you're ok.

by John Williamson
Sung by Wendy Mathews
http://www.lyricsmania.com/flower_on_the_water_lyrics_john_williamson.html