421 days

I don’t know if thSmileris will be the last blog post that I write but I am fairly sure that it will be the hardest. It is only now, nearly three months afterwards, that I feel I am able to try and write about it. It is impossible to articulate the depths of the pain that Livvi & I have endured over the last 10 weeks but I thought it was important to try.

On Saturday 16th of February our beautiful son Harry died peacefully at home. There are many questions yet to be answered about what caused Harry’s death but nothing can change the fact that in what seemed like the blink of an eye, our little fighter had fought his last battle against the hardships that he had had to endure throughout his short life.

There are no words that I can find to adequately describe the state13.10.12 311 of tortured limbo that Livvi and I found ourselves in while the emergency teams both at our house and later at the hospital tried to bring our son back to life. I don’t think that I will ever forget the drawn out minutes waiting in a stuffy airless room while doctors tried in vain to revive Harry. The absolute shock plays with your mind in such a way that it is almost a perverse relief to be told that there is nothing more that can be done. I can remember thinking that even though there was never going to be a happy outcome, at least our poor son’s tiny body would not be racked by any more of the brutal convulsions of the defibrillator. What was this lack of blood supply doing to his already damaged brain? Hadn’t our son been through enough already in his short life?

Harry beginning to smile again in the week before he died

Harry beginning to smile again in the week before he died

Our overriding impression of Harry’s short life will be one of smiles and laughter, not just his own but also how he inspired them in others. This despite the fact that for the last five months of his life we hadn’t seen his beautiful face light up into one of the big beaming smiles that he was famous for. Our memories of our son are filled with his infectious giggles and the joy that his unbounding happiness gave us. Not knowing the prognosis of Harry’s brain injury was the hardest thing to live with on a daily basis, not knowing whether there was any point in us hoping for the recovery that may never come. I think what was the most astonishing to us both were the leaps and bounds that Harry seemed to make once we had brought him home from the hospital. From the little boy who was in constant agony when we brought him home in late October, the transformation was remarkable. Indeed, the last two weeks of Harry’s life probably brought us the biggest surprise as we started to see glimmers of the smiles that were his signature. We even heard what may even have been a giggle. Were these the tiniest green shoots of a recovery that we never dared hope for? Fate, it turned out, had other ideas.

Harry’s funeral was a gloriously sunny spring day in early March. Cold certainly, but with clear blue skies and sunshine to lift the spirits of all of the family, friends, colleagues and health professionals that came to celebrate Harry’s life with us that day. As hard as that day was to get through, it was important to us both that we had no regrets about the service. With that in mind we both wanted to say some words that would not only reflect on Harry’s short life but would also try and encompass all of the joy that Harry had brought to our life.

Night night son, sleep tight x

My eulogy to my son, Harry Robert Nixon:

My son was and always will be my inspiration. No matter what had happened during my day,  I could not fail to find strength when I saw my boy. I can still scarcely believe what Harry had to endure in his short life and yet he kept fighting back. Everyday issues seemed to pale into insignificance whenever I was with him. I like to think that Harry taught me to be a better person, I certainly found reserves of 13.10.12 342strength that I couldn’t ever have expected to find otherwise. Perhaps more importantly, I learned to be grateful everyday that we had a beautiful happy little boy.

Harry’s strength was also an inspiration to others and in return others have been an inspiration to us as a family. Livvi and I have learnt so much in the last 14 months and as a family, we have been lucky enough to meet some wonderful and kind people who have helped us see that there is life beyond the diagnosis, and that children and families do not suffer from Down’s Syndrome. In fact, once we had got over the initial shock of Harry’s diagnosis, we were excited about Harry’s future – we felt privileged to be part of a small club that not everyone has the chance to join. 
Harry’s big beaming smile could brighten any mood, lighten any room and above all else made every day a joy to get up for. It is testament to Harry’s character that there are so many people here today. Harry touched so many lives in his short time with us, he cemented existing relationships and helped forge new ones, bringing us into contact with some of the kindest and most generous people it has been my pleasure to meet.
If that is Harry’s legacy then it is a fitting one.
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9 thoughts on “421 days

  1. A beautiful piece about an amazing little boy. my thoughts are with you at this unbelievably difficult time

  2. A beautiful tribute to a gorgeous son. My brother Jeremy has DS, just turned 40, we were lucky he had no other health concerns until 29 when he was diagnosed autistic, held back by DS! As a baby and small child, Jeremy was so beautiful that people would stop us in the street to admire him, the DS added to his charm. His passport photo, age 5, was so good the photographer put it in his window ! Jeremy’s mental age is about 7, he is still a little boy, responds to darling, honey etc. You never forget the baby, no one who knew Harry will ever forget him. It’s amazing how life’s problems fade away when faced with true tradgedy, all we can do is cope with the now and remember the laughter. The love is always there. Be kind to yourselves.

  3. Wonderful, beautiful, brave post. We think of you often and never cease to be inspired by your strength and love. Hayley x

  4. My love is with you and your family at this difficult time, my daughter has DS and I know how just one smile can brighten up the darkest room and lift anyone’s spirits.
    Keep smiling up there little man xxx

  5. Crying as I read this. Harry had a lot in common with my son Michael & i wish hat they could have met. Michael has Down Syndrome, was diagnosed with Hirschsprung’s Disease at 5 days old, had colostomy at 8 days old, had heart surgery for complete AV canal defect at 4 months old, & just had pull through done at 19 months old. He is now 22 months old. I am so sorry for your loss. My heart just aches for you & your family. Thank you for sharing your story. You have reminded me to cherish every moment (as you did). Harry was blessed to be part of such a loving family. You will be part of our prayers tonight.

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