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.

Saturday, April 17, 2010

Book 2 Artemissia~ A Spiritual Awakening

Automated writing through Carl Sagan,
Well, hello Kelly. Good to be talking to you. So tell me what you were interested in discussing today?
Ah music, it even soothes the savage beast. I am joking here, you do know that. But in actual fact it has much truth in that saying. For music is the essence of our being and each being comes to earth with their own tune, so to speak. That tune is your life story and it is portrayed in your speech, actions and feelings. So in saying that, what is your tune that you are whistling?
I guess what I'm saying is choose your tune wisely, you may change it any time you like. But make it a good one I say. Why not make it a epic song. That makes your heart soar and brings tears to your eyes and makes you truly feel alive. Now thats a good song to sing!

I choose "Arms wide open" by the band Creed
This song to me is about complete surrender and in surrendering God Says "Welcome to this place. Under the sunlight. I'll show you everything, with arms wide open, now everything has changed. I"ll show you love! I'll show you everything!"
To me I choose this song to sing, because it is about faith. Faith in the unkown, and in trusting in that with faith their is a knowing that everything will be okay.
kel xoxoxo love and light

Sunday, April 11, 2010

From Book 1~ Artemissia~ A Spiritual Awakening

From book 1 ~ Artemissia~ A Spiritual Awakening
Dear God,
I do bubs physio and see she is completly present. I be strong but sometimes I feel like crying. I yearn for that interaction and to be able to hear what she is thinking or trying to say to me telepathically. Because she is so close to me emotionally I seem to not be able to hear her thoughts. I dont know whether I block it consciously or subconsciously. Sometimes it hurts. Its too close to the heart. I know if I go to a higher level meditation state I could hear her like I have before. To know that she is completly present in my heart and in my mind is good for me to understand. Yet i'd lie if I didnt say that I still long and yearn for that missing interaction between her and I. A smile, a facial gesture, to speak, to move her body. I wish she could do all of these things. Dont think Im not grateful and dont count my blessings every day that she is here. Dont worry I am eternally thankful for that. I know she is a miracle and that we continue to see even more miracles. I just miss her cheeky little personality.
I practise detachment and compassion. Compassion is definatley easier then the art of detachment, thats for sure.
I know the reality that we live in. I know that we are spiritual beings in a human existance. I know that I picked this at one point in my life to evolve and become 'awakened'. I know all this to be true. But it does still pain me even though I am optimistic and strong.
I guess thats the reality of being a human. We have senses and emotions and I must honour them. If I were not to feel the things that I feel how would I have 'woken up' and become aware of the world we live in.
I understand that we already live on 'heaven on earth" and somehow we do choose our own lessons to remember. But it sometimes doesnt make it easier to see our daughter, someone whom I feel so much love for in the state she is in.
She is so peaceful and surrounded by love and she continues to teach us day by day with patience and understanding of our illusionary suffering. She has brought out the best in us and she always will, for this is the reason that she selected to be here. I understand that when you have a child you do really learn about unconditional love in its finest form and when your child is unable to show you and return her love in a physical way, a hug, a smile, a word you learn the lesson even deeper. That is there are no conditions. Just love, its that simple.
I long to show you all the beauty in the world. But I guess she is the embodiment of beauty and all that she radiates.
I love you Artemissia for all that you already are and continue to be. That is love, strength, courage, patience, perserverance. These are just some of the things you are to me.
Thankyou Artemissia for helping me be the best I can be for today and all of my tommorrows.

We are radiant light
spinning and twirling,
in lifes orchestrative symphony.
Waves of love and light.
Together as one.
You and I my dear one.

from mum xoxoxox

Sunday, April 4, 2010

Hug with Amma ~ 1st of April 2010 BNE

We had a hug each with AMMA at Brisbane.
It was beautiful and wonderful and we felt her love, and compassion.
She is a beautiful lady and we are blessed for the trouble that they went to
so that we could get bub in and out easily, hassle free.
Thankyou Amma and all her team for their kindness and love.

Happy Easter to ALL !

This is a big Happy Easter call out to all those wonderful people that have helped and that continue to help our family with their friendships, time, love and support.
It is appreciated more then words can say and we are eternally grateful for your ongoing love. Know that we send all our love to you all in return.
love and light xoxoxo
Kel, Alex, Artemissia and Colleen

Extract from my book Artemissia ~ A Spiritual Awakening, A day in our life

Exract from CHAPTER 12~ Ground Hog Day

One day in Artemissia’s life included a strict regimented routine starting at 6am.
I would come on duty and make her 6am,7am,8am drugs and water flushes.Then suction and rotate her every 1and 1/2hours. Nappy changes and monitoring. Then mum would start at 10am then pop bub in the shower in her seahorse chair at 1030am. Then onto the bed to get her dressed, dry her hair, into her pram, get her support boots and gloves on, make her drugs up for ½ the day that are given to her every hour with water flushes down her tube. Get outside in the sun amongst the frangipanis 15mins then back inside.

Out of the pram after 2hours, make her bed, do the milk to go in her nasal tube, Fish Oil drops in her milk, into her monkey for ½ hour, put her back on the bed, boots and gloves off. Suction when she requires it. She can have coughing fits, gags, vomits so you must always have her near you and the suction machine. Physio time and that includes massage and repetitive exercises for an hour, (twice a day) for all her body, arms , legs, fingers are all moved to keep active and helps with blood circulation because if you don’t move it you lose it. Then chest pats whenever needed but at least once a day. On with the nebulizer for breaking down the flem on her chest. Read her a book, then the day shift hand over from mum to me at 1pm. Prepare all her 1pm, 2pm drugs and 2pm, 3pm and 4pm water flushes. Physio and massage again then back in her pram , boots and gloves on for 2hours, suction and nappy change throughout whole day. Back onto bed rotate every 1 ½ hours so no bed sores occur. Monitor and record every thing you see throughout whole day and night. As in how many poos, wees, physio box ticked to show everything has been done. Cross the T’s and dot the i’s in every box on the excel spread sheet so the hand over’s could be able to be understood what has been done and completed so as not to double up on anything.
She was feed over 24hours continuously with 6 hours off spread out over the day. The drugs started at 6am and the last one for a day cycle would be given at 10pm at night, everyday, all day, 7days a week, month, after month, after month.

God's Poem ~ Extract from my book , Artemissia~ A Spiritual Awakening

~Gods poem through me automated writing.~

Choose love, not fear.
Braveness not weakness.
Courage and strength.
Not darkness or disillusion.

Lift your gaze to the light from the heavens,
and know that you are a part of it,
as it is a part of you.

Radiate with golden abundance,
as that is your true spiritual nature and destiny.

Thank you God