Remembering Aedan

Remembering Aedan

The tremendous loss that we experience -- as parents and as a community -- when a child sucumbs to the effects of congenital CMV cannot by overstated. We see ourselves in each parent's experience and we extend our love and hope to all children born with CMV, much like we would our own. And while hearing loss is considered the hallmark of congenital CMV, so many children experience profound physical challenges and, in some cases, life-limiting outcomes. One of the families who has touched our community so deeply over the years lives in South Africa--the Marshalls. Their son, Aedan, was medically fragile, but a happy and well-loved boy, by his peers and siblings. Upon Aedan's passing, his parents each chose to deliver a eulogy in tribute to their son and we would like to share that with you today, in honor of the beautiful life of their "little fire", Aedan. 

"I could not do it in the beginning but I am now starting to look at all the amazing pictures of our precious boy and reliving what he really meant to us. We tried in some way to reflect that in the eulogies that I and my husband made at his memorial. So today I would like to share these words with you and to dedicate them to all the truly wonderful cCMV and special needs children who have shaped their parents lives and made them better people. Aedan certainly did that for us." - Lindsay Marshall

Aedan's eulogy - by his father, Allan Marshall
"Afternoon all, from Lindsay and myself, thank you for coming through to celebrate the life of our youngest son Aedan. It is said that a persons measure can be taken by the people who attend their funeral. Today I see some of the most wonderful, loving kindly people, that I have ever met and some that I have never met but who in some way knew us through Aedan.

Aedan was a great adventure, his life was not an easy one by any measurement. I was going to tell you about some of his struggles and the lessons that we learnt though him but that is not why we are here today. We're here today to celebrate his life - my beautiful son.

Nothing about Aedan was mediocre, his trials were formidable, his losses - devastating, his victories - titanic and his love - sparkling. Love was perhaps the biggest lesson that he taught us. It is, not was unconditional and pure.
When Aedan smiled he did so with his whole body. He would draw his knees up into his chest, his shoulders would come up, he'd bring his hands to his mouth, he would beam a wide smile and snort. He had a large vocabulary consisting of snorts, squeaks, grumbles, and moans, which anyone who was lucky enough to know him were rewarded with for giving him their attention. He was naturally quick to point out that you had miss interpreted his squeak with a torrent of grumbles.

When happy he would add the Aedan kick which comprised of multiple quick kicks which if in range were sure to result in bruising. If he wanted picked up he would give a few squeaks or a very specific cry if the need was suitably urgent and arch his back. He enjoyed sunshine and often fell asleep in his chair outside in the dappled sunlight and loved it when other children played along with him - or in some cases on him.

There are many different ways to look at a person's life. For Aedan I would like to use three.

For those of us who like the religious perspective: Aedan was gifted to us by God, for whose benefit, I'm still not sure. What I'm sure about is that he had angels looking after throughout his time with us. And that when he was called back to God they flew along side.

For those of us who like the physics perspective: We are made from the same materials that constitute stars and which are from time to time ejected by them. Each of us effectively being made up of star dust and a little bit of the same energy found in the stars themselves. Like stars, some burn brighter than others but that luminosity comes at a price they burn out quickly. Aedan burned very brightly so it only made sense that he his measure of time with us was painfully short. Beautiful but short and now he has returned to the stars which we saw reflecting in his eyes the night he died. 

For those of who like the magical perspective, a poem by W B Yeats:
"Where dips the rocky highland Of Sleuth Wood in the lake, There lies a leafy island Where flapping herons wake The drowsy water-rats; There we've hid our faery vats, Full of berries And of the reddest stolen cherries. Come away, O human child! To the waters and the wild With a faery, hand in hand,For the world's more full of weeping than you can understand.
Where the wave of moonlight glosses The dim grey sands with light,Far off by furthest Rosses We foot it all the night, Weaving olden dances, Mingling hands and mingling glances Till the moon has taken flight; To and fro we leap And chase the frothy bubbles, While the world is full of troubles And is anxious in its sleep. Come away, O human child! To the waters and the wild With a faery, hand in hand, For the world's more full of weeping than you can understand.
Where the wandering water gushes From the hills above Glen-Car, In pools among the rushes That scarce could bathe a star, We seek for slumbering trout And whispering in their ears Give them unquiet dreams; Leaning softly out From ferns that drop their tears Over the young streams Come away, O human child! To the waters and the wild With a faery, hand in hand, For the world's more full of weeping than you can understand.
Away with us he's going, The solemn eyed: He'll hear no more the lowing Of the calves on the warm hillside Or the kettle on the hob Sing peace into his breast, Or see the brown mice bob Round and round the oatmeal-chest. For he comes, the human child! To the waters and the wild With a faery, hand in hand,From a world more full of weeping than he can understand."

Aedan's Eulogy - by his mother, Lindsay Marshall
The person went to this school then they went to university, they started work here, married someone, had kids, did amazing things had a good and full life. Of course this is a bit of a generalisation but how do you describe the life of a little boy who could not walk, talk, eat, do anything for himself in anyway, and at a cursory glance would not have any impact on the world in the so called normal sense of the word. Then perhaps Aedan is a complete contradiction because his impact has reached so many people not only within our immediate circle but in fact across the world. Today is a celebration of his life, and a sharing of the lessons learnt that can hopefully impact you all here today.

I have always loved the name Aedan, Allan and I chose it before he was born. And considering the path before both him what a perfect name it was.

At home we have plaques with the names of all our children and their meanings. Aedan's is described as the following: Aedan - from the gaelic name meaning "Fire or warmth of the home". He is wise intelligent and sharp-sighted. He will rise victorious in his endevours. His touch is as soft as the morning breeze. Always a contender. He is logical analytical and precise. A spiritually commited person. Fans the spark of hope. One who keeps his life orderely. He brightens the world around him."

So it was on the 24th of October 2006 that our Little Fire arrived and was to change our lives forever.

Aedan brought us so many gifts, perhaps one of the main ones was that through him the angels of the world were revealed to us, our faith in humanity restored. We have learned to experience the joys of the world around us and not take the small things for granted. We have learned how resilient the human spirit actually is and even though you think you are down and out you can rise up to even greater heights than before. We have learned about the real meaning of love. We have learned how incredible the human body is, when having so little, those achievements of Aedan kicking his legs, rolling, sucking his fingers when he was tired, smiling with every inch of his face and body have been the closest thing to perfection I have ever seen. It is through Aedan that we have revelled in and celebrated as we have watched Connor and Sabrina grow. Aedan brought us happiness in way I cannot begin to describe here.

When Aedan was born, Allan said four words that have created the basis for how we lived from then on, "he is my son". Disabilities, health issues aside, first and foremost, he was our precious little boy.

At the age of 6 months before even we knew the extent of the battles we would face with Aedan. I met with a lady called Ilke to see if she would consider having him in her day care and she said let's give it a try. There was no need for her to do it, she could have said no and it would have been perfectly understandable but she did not. It was at that moment that the first of the angels and ultimately the person who would become my son's best friend was revealed to us. To you Ilke, thank you from the bottom of my heart, for loving my son the way that you did.
Thank you for giving Allan, I, and Connor, and ultimately Sabrina a sense of community and belonging for Aedan. For many, these things might seem insignificant, again taken forgranted, it is a normal part of growing up, but the school pictures, Friday baking, sticky hand print paintings are things we will treasure forever. Aedan was part of something so special.

One of the things that I am struggling with at the moment is the emptiness I feel, what to do now, there is so much free time. With Aedan our life had an incredible structure and this included Saturday visits to Gillian. Gillian you gave more than just physio your wise counsel supported us in more ways than you can imagine.

To our beloved families, thank you for feeding us, watering us, listening to us, being there, and ultimately giving unconditional love to your cousin, nephew, and grandson.

Through Aedan we have learned the simple pleasures of life, and what a profound impact they can have on us. We were never sure how much Aedan could see but we did know that we could hear. One Christmas friends gave him a baby Barney toy. Not giving it much thought it remained in his cot. One day some time later I pressed it and it sang the infamous Barney song. To my complete surprise, Aedan's eyes sparkeled and his face creased into the most beautiful smile. I did it again and I got the same response. From that day on we have hunted and bought every conceivable bit of Barney music, and the response has always been the same.

Aedan had favourite words as well, Zoom zoom and woosh. Anyone who said them would get a beautiful response, pure pleasure. I will never forget teaching Connor to say it. When he did and Aedan smiled and laughed Connor turned to me and said, "Mummy, I can make Aedan happy". Aedan always loved sucking his fingers to the point that his nail fell off as a baby and was never the same since. It gave him comfort and was the sweetest thing in the world to watch.

Aedan had a magnetism that was quite amazing, all Aedan knew was love and perhaps that together with his angelic little face is what drew people to him. One year at a shopping center in Natal, we were having coffee. Someone came rushing up to us with a fluffy toy cow. We had walked past a gift store and the owner had sent this toy to us. We have been stopped in so many places.

Aedan gave love and as such received it in bucket loads. And what an amazing lesson that is for all of us. If we keep the bigger picture in our minds, then the hate, anger, frustration, and bitterness that seems to follow our daily lives could fall away.

Allan, I know today we are celebrating Aedan, however we are able to celebrate his rich and rewarding life in no small part because of your role as his father. Martin Luther King said, "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy". Whatever challenge we faced, your steadfastness and your love for Aedan and your family never waivered. This carried us into the magically wonderfully, happy times that we had. And boy there was no one who could make Aedan smile the way you did.

I have so many happy memories with Aedan, we had so much fun together. In May of this year, we all went to a concert in the park to hear Johnny Clegg. As the twilight descended, Allan took Aedan down to the stage and together they danced to the Spirit of the Great Heart. As such we have dedicated a song called The Crossing to Aedan, as he journeys from this world to the next where his forefathers and ancestors have gone before. Even though his heritage expands over hemispheres he is still a son of Africa.

For us, the 2010 World Cup will be focused around the hospital. Aedan was admitted the day before the opening ceremony. On that day the nurses helped me attach a South African flag to his bed. I realise now that if some of those teams had half the amount of spirit and will that Aedan showed throughout his life they might have played a bit better!

So Aedans lessons for living would be: If there is music you like, turn it up loud and dance and sing it will make you feel fantastic no matter what anyone else may think. Revel in the beauty of the world around you. There is nothing like a good cuddle. Live life to the fullest you can do it. Find love in yourself and other people--it is much easier that hate. Love your children for who they are not what you want them to be.

They next time you pass a disabled child, don't turn your head in pity but know, even though there might be suffering, they have the key to what love and happiness really is.

To my son I will never know why you chose me to be your mother but it has been an honour and a privilege. My heart aches for you.

"God saw you getting tired and a cure was not to be. So he put his arms around you and whispered "come with me". With tearful eyes I watched you and saw you pass away. Although I loved you dearly, I could not make you stay. A golden heart stopped beating, puppy paw hands at rest...God broke my heart to prove to me, he only takes the BEST!""