Our beautiful son Haakon Patrick was born on 2nd of Feb, at 5.34 pm, he was 3575g and 53 cm long.
Unfortenately Haakon had some problems, his body was not producing energy, and because of that his blood got acid and he had fits/seizures. Doc's think it is something called mitocondrial disease. He was on strong painrelief from he was born, and they took him straight to intensive care after a very short cuddle (15-20 mins).
Our son died 6 days old.
However, this disease is very rare, it has only been 20-30 cases of this in Australia so far. The chances of getting this disease is
1: 1 million, and the doc's don't really know why it happens.
Haakon’s Story
Haakon Patrick, I am so glad to have this opportunity to speak to you because I would like to tell you a wonderful little story. You may not know it, Haakon, but you come from a long, long line of great storytellers. Your dad is Irish and your mum is Norwegian and the Irish and Norwegians are famous throughout the world for their wonderful stories and sagas. And, of course, you were born in Australia and we all know how the Aussies can spin a fine tale!
The story I am about to tell you is wonderful because it is about someone very special. It is a story that will bring smiles and tears and touch those who hear it in the most secret and sacred parts of their hearts and souls. It will remain with them long, long after the tale has been told. Little Haakon, only the very best stories can do that. What makes this story extraordinarily magical is that it has never been told before and you are the very first person to hear it.
Once upon a time, and yet not so very long ago, a little boy was born. His mum, dad and all his family had been waiting a long time to meet him and when he arrived, he was just as beautiful as they had expected. When one of his grandmothers first looked into his eyes, she touched his little nose and said: “Hallo, little boy, we have been waiting a long time to meet you!” His proud mum and dad were filled with delight and said: “Look, this is our son. See how perfect he is!” And he was a very handsome boy, with sturdy broad shoulders and beautiful features – perfectly formed little hands and feet, a nose exactly like his mum’s, an exquisite rosebud mouth and the most gorgeous little ears. For a little while, there was great rejoicing and messages were sent across the world to let the little boy’s family know that at long last he had arrived.
Now, Haakon, this is the part where the story becomes a little bit sad because not long after the perfect little man had arrived, his doctors and nurses noticed that all was not well with him. They gave him extra special care and attention and tried their very best to find out what had happened to make him sick. Perhaps you are just too little to understand what I am going to say, Haakon, but sometimes things happen in this life that no-one can fully understand. At times, these are very happy events and at others they are tinged with great sadness. I think, Haakon, that this might be what people sometimes call ‘the mystery of life’ because there are no answers or explanations as to why things turn out the way they do.
Anyway, let us get back to the story, and you are not to worry because another mysterious thing about life is that it has a wonderful, magical way of transforming very sad events into moments of thanksgiving and joy. You know, Haakon, a very wise person once said a very sensible thing about this ‘mystery of life’ business. What he said was this: “When the heart weeps for what it has lost, the soul laughs for what it has found.” I guess that might be just too hard for someone as young as you to understand so perhaps if I do finally get back to the story, the meaning might become a little clearer.
During the next few days after this beautiful baby boy was born, the people close to him just did not know what to do because as every day passed, the news from the doctors made them realize that the little boy was very sick indeed and he probably would not live. Messages were sent again across the world, this time to tell the little boy’s family the sad news. Everyone who had waited to welcome him was heartbroken and do you know something, Haakon? A very strange thing happened: the rain began to fall and it poured out of the sky day after day. The little boy’s mum looked up and said: “See, even the angels are crying.” Everyone’s hearts were weeping because they knew they were going to lose this little boy.
Then, Haakon, some amazing things began to happen, for even though the little boy lay sleeping peacefully in his cot, somehow he managed to touch, in a very special way, the lives of all those who were thinking of him and praying for him. The people who were able to come and see him, to be in his presence, all said to one another: “Somehow when I look at this little boy, I feel at peace.” His mum and dad amazed everyone with their courage and strength. They stood together as one and kept a constant watch over their beautiful son. And although the rain poured down, day after day, everyone who had waited for this little boy gradually felt that their lives had been changed in very significant ways: some said that they found courage deep inside themselves that they never knew they had; others began to look at their lives with clearer eyes, able now to distinguish between what was really important and what was not; still others began to look beyond themselves and towards people walking past them in the crowded streets and wonder if some of them were heart-sore and troubled too; and all of them, without exception, were in awe and wonder at the care and compassion that was showered on the little boy by his doctors and nurses. The messages that flew backwards and forwards across the world strengthened family bonds in shared concern and love for the little boy. And all the while, he slept peacefully in his cot, seemingly unaware that he was the source of these tiny rays of light that were breaking, bit by bit, through the grey clouds of sadness. Courage, strength, resilience, compassion, kindness, generosity, comfort – all these and so much more were blossoming from the seed of love that this little boy had planted in the hearts of all those whose lives he had touched. So you see, Haakon, while their hearts were weeping for what they were about to lose, their souls were filled with joy for what they had found.
When the day finally came for this little man to complete his journey here on earth, he did so quietly and peacefully in the arms of his mum and dad. And on that day, the angels stopped crying and the sun pierced the clouds, bathing the whole world in its golden light. Now, Haakon Patrick, I expect you think that I have almost come to the end of the story but I have to tell you that the wonderful thing is that this story does not have an ending because it is all about you – it is your story. You are that special little boy whose six short days in this world made such a difference to so many lives. You are the perfect little man who gave the gift of tears to all who had waited for you and yet, magically, you graced their souls with the joy of love.
Now, Haakon, while your story will never end, it is a fact we must face that your journey in this life is over. However, it is a journey that we have been privileged and honoured to take with you. You have set the pace, you have led the way. Together we have gone to places where we didn’t want to go. It has been a great struggle for you and for us. But your incredible strength made us strong, your indomitable courage helped us to be brave, your beautiful spirit guided us along the way. The road we have travelled has been an arduous one, but we would not have missed this chance to travel with you, though sometimes blindly. You have enriched our lives and they will never, ever be quite the same again. Now we must go our separate ways: ours to continue along this life’s path and yours in the next. Your Great Aunt in Ireland has sent you this blessing to guide you to where God, the angels and your own ones who have gone before you from Ireland and Norway will give you a warm welcome and delight in your presence:
Little Traveller,
Gentle Visitor of Love,
Peace,
God Bless,
Safe Home.
And so, little Haakon Patrick, your story, and you, will continue to live on here in our hearts and way, way beyond where the sky is blue and the light is gold and where the angels never cry. Farewell, until we meet again…
So very sorry for the loss of your precious angel and thank you for sharing with us, that is so very beautiful. May the memories of your angel stay close to your heart forever.
Regards,
Dianne
Emmanuel born sleeping @24wks
Trisomy 13
Words can't describe how sorry I am for the loss of your precious baby boy!
Thank you for sharing his story with us, he will never be forgotten!
Sending out lots and lots of BIIIIIIIIIG hugs to you and your family!
Last edited by JennaJayen; March 2nd, 2010 at 05:21 PM.
: removing sig
So sorry to read of the loss of your precious boy. I hope and pray that you can find strength in the love of those around you to help you through this difficult time.
What a beautiful eulogy. I cannot imagine your pain at the moment, but know that I, like many, many others are thinking of you. He will always be with you, always.
that is the most beautiful Eulogy, my heart aches for your loss. I hope you have the love and support around you to help you through this. Thank you for sharing your story, its amazing that out of such pain and great loss the eulogy tells us that even the shortest life can have such a huge impact and make such waves in this world. You little boy sounds like he is a very special soul! hugs and prayers to you and you families!
Tj - I'm so terribly sorry for the loss of your beautiful little boy.
Thank you for sharing his story with us...thinking of you and your family and I hope you can continue to find strength and courage through what must be the most awful of times.
Huge hugs to you.
x
TJ - there are no words, only love. Thankyou for allowing me to read about your precious Haakon. Know what? You're right - that eulogy was pretty awesome. Be surrounded in love.
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Haakon's story (LONG)
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So sorry to read of the loss of your precious boy. I hope and pray that you can find strength in the love of those around you to help you through this difficult time.
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