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.

Friday, April 29, 2011

Fun and music in the breeze

Good morning my sunshine. What a great day we had together yesterday. It was so good to watch you playing with your friends, soothed my soul and fill me with happiness again. I know you shared the extra chocolates bunnies I saved for you from easter. Everything you do makes my heart burst with pride.
Your little rock n' guitar needs some work after all this rain. 3 years now and it finally needs some love and care too. So amazing it kept going and going, playing the tunes you enjoy so much. I will fix it now and together we can bring it back to your side. We can play some tunes for everyone. Don't forget, when you left I packed your little keyboard as well. Yes, now I hear you practising your tunes again, music in the breeze. I see your little fingers running over keys. That is the sweetest melody of all.

Thursday, April 28, 2011

Soothing your soul

Dad, Honey and I watched over you again last night as you fought to sleep like every night. Sitting on the edge of your pillow I gently teased your eyelashes, carressed your cheeks, silently shooing away the bad dreams. Just as you always do for me, Honey tickled your face with her soft purple ears, together we soothed your soul and showed you the wonderful place in your heart that I now live. It is beautiful to be by your side and see you smile. It lights my world as I do yours. You were cold and I tucked your blanket about you, singing the lullabyes you still sing to me. In the morning when you woke, I watched as you rose looking about, searching for my cot, reaching out for me. You could not see me but you could. I am here by your side, I am here on the wall, I am here in your heart, I am everywhere in your world. I am here for all eternity. I watch as you move about picking Honey up and tickling my eyelashes and cheeks with her soft ears, I smile at you and you kiss my eyes, smiling back. That's so much better.

Wednesday, April 27, 2011

Happy Birthday Mum

Hi mummy, Happy Birthday, I hope you have the bestest day. I will be by your side so you can feel all my hugs, kisses n' hugs.
Always love you mummy. I sent some flowers see, our favourites and even got the sun to shine for you today. A special day for a special mum.

Baby please stop cryin'

Dad we had so much fun today, you read to me from my special book before the storm, the frangi flowers Aunty Julia sent me were beautiful. I know you can see into my eyes, feel my spirit, and, you know when I'm happy, that's always! Even when the storm hit again I was happy, happy for your tears washed away by the rain. I know they are tears of happiness, happy to be together, happy for my new friends, happy for the peace we have found.
Hey dad, Bob got it wrong with his song, it should be "Daddy please stop crying".
We have the purest love of all, though we can't touch, see or hear, we "know", we feel each other deep in our hearts. Even when we come home each day and I see you kissing my pictures it tickles my eyebrows. You make me so happy.

Tuesday, April 26, 2011

There will be "a morning after"

Mother Nature is so loving, yet so harsh. Once again she threw her might around, fearing none she lashed us both with wind and rain through our "special time". I shut our eyes and took us back to my youth, christmas eve 1974, showed you where as a boy I stood by my father, wet and terrified, in the "eye" of cyclone Tracy, so peaceful in her heart, yet......devastating. As she moved her "eye" away, we clambered back into the safety of the ruins to wait out another 3 hours of being lashed by rain, debris and a thousand screaming demons. In the morning we emerged from the wreckage and rebuilt, we learnt!


So as with then, we must not lose the lessons we have learnt together. Though as humans we feel so infinitely tiny in the big picture, believe it, we are actually giants.
Without One, There are None. There will be "a morning after" my Princess.

Sunday, April 24, 2011

Every Joy

Sitting by your side today, you and I talked and sung, reading from your special book brings us both so much happiness. Happiness because it lights your smiles of joy turning them to giggles and laughter, like the last time you laughed. Remember your first birthday, perched on my shoulders, you chuckling and giggling, my hair tickling your little chin while I ran about barefoot on the lawn. Memories etched deep inside for eternity. Oh baby, how I will always treasure each and every moment we shared. Every pain and every joy!

Friday, April 22, 2011

Chocolate smiles

Today my little Princess the sun shone and warmed Mother Earth for us. It was so good to sit on the grass by your side, watch you playing, laughing and singing. My heart soared and I was happy for you. You and I could reach out to each other and sparks would fly. You knew when I was there, you know that I'm here. Today was really special, a chocolate bunny and an egg. I know you'll share them with all your friends. There'll be no rest in Gumnuts Rest tonite. See you all dancing in the heavens, happy with little chocolate smiles. Remember I would melt small pieces and touch them to you lips and tongue, letting you taste the richness of cocoa. Your face would soften and your look was one of pure content. Come back baby, let the ground part and Mother Earth return you by my side. "No" you say, "wake up dad, I am happy, I am with you, is there more chocolate"

Tuesday, April 19, 2011

Guide me and light the way Tiny Dancer

I am so lost my little princess. You are my inspiration through all this. Together we must never let the world forget in order to be able to help others. Your smiles each dawn give me the strength and resolve to create change and strive to preserve your legacy. You fought to help others, to light the way and change the future. Your star now burns brighter than ever, turning night into day. Through your blindness you could see all, and still it is so. See, I reach out for you, and from deep in my heart you soothe the agony and pain. My path is brighter than ever. Thank You

Monday, April 18, 2011

Everlasting flower

Today when I brought you the flowers you and I had picked, I was sad my love. It wasn't the cold of the rain, winter is coming and there will be no fresh frangipani flowers till spring. Once again you wove your magic and now resting at your feet a beautiful everlasting frangipani flower, created from Paua shell. Handmade especially for you by Libby, a friend that understands and cares, a friend we thank. I know you can see how many wonderful people you have touched. How many you inspired and continue to inspire. Myself amongst the number. Slowly, tenderly you bring me out of the cloud that I live within. Even though my heart wants to stay in this shroud, your smiles draw it out into the sunshine. It aches not to be able to hold you, hug and kiss you. I know my baby, you are part of me for eternity, and I a part of you. Walk with me into the light.

Sunday, April 10, 2011

Mother Earth keeps you safe

Today, you and I, made our daily pilgrimage, to be by your side. Where Mother Earth keeps you safe, deep inside her womb, close to her beating heart. It is as close as we can be, I touch the grass above you, now wet with tears, praying for a sign, kiss the earth that is your tomb. Gently arrange fresh flowers we gathered together. You watch me and smile, you are free and dance around. I read to you from your book. A gift from Aunty Julia and Uncle Terry, they are angels too. Some many angels have come to us. I know we are blessed. We stand together, you and I, we give thanks in prayer. My heart breaks again, you touch me there, I know, it's time to go.
Tomorrow is another day, you and I will be by your side again.