The first half hour I spent with my son was an emotional rollercoaster like no other I’ve ever experienced. Emotions run high following any momentous occasion, particularly the birth of a child. However, when Raphael was born, things really went into overdrive. The first thing I noticed after he was born was that he looked a little bit like a child with Down Syndrome. It may sound far-fetched, but that was honestly the first thing I noticed about my son. It was a passing thought, and I was soon consumed in a rush of other emotions, but it lingered in the back of my mind throughout the entire crazy half hour that ensued.
As Raph lay on his mum’s chest, I was delighted to find that he was a boy! Don’t get me wrong, I love Raph’s big sister more than you could imagine, and I hope we get some more little girls in due time, but I think every dad dreams of having at least one little boy, and I was chuffed to bits when I learnt that we had a son. But Raph hadn’t started breathing yet, and there was a slowly growing sense of urgency in the room. Our midwife asked me to cut the cord quickly, and they whisked him away to a little humidicrib next to the bed where I followed him. Even as this was unfolding I remember thinking to myself, “Gee I think he might have Down Syndrome you know!”.
The room began to fill up quickly now, and many different doctors introduced themselves to me, all the while I stood helplessly and watched Raphael lying on the blanket, still yet to display any signs of life. You can imagine the anxiety that began to grip me as he was given oxygen by one of a throng of doctors next to the bed, and CPR was performed on my tiny little newborn son. What you probably can’t imagine is that all the while there was a little part of me still obsessed with the thought that I think he might have Down Syndrome.
Raph finally gave a little cry, and I felt an enormous sense of relief. Once Raph was breathing more steadily and had gained a bit of colour, were taken down the corridor to the intensive care room. I was by myself as Amelia was still in the birthing suite being checked by the obstetrician, and so I had a lot of time to think as I watched doctor after doctor come through to check on our little boy.
I have had a lot of exposure to people with Down Syndrome in my life. I had a classmate with Down Syndrome, I know many families with a Down Syndrome child and I spent 7 years working with kids and young adults with disabilities, many of whom had Down Syndrome. I’ve seen the wonderful quality of life they enjoy and I know the amount of happiness they bring to the lives of their friends and families. So I knew what I should be feeling as I processed the fact that my son probably (as the doctors hadn’t said anything yet) had Down Syndrome. I kept telling myself, “you are lucky to have him” and “he will bring you so much happiness”. But more than anything I felt guilt. Guilt that I had been silently hoping that Raphael didn’t have Down Syndrome while he lay there fighting for his life. Guilt that I didn’t fully believe the things that I was telling myself and was mainly just worried about how different my life would be to what I had planned. Guilt that instead of giving thanks for Raph joining our family, I had been silently mourning the loss of the son that I had imagined having.
With time I have come to believe that Raphael really is a beautiful little soul who has already brought so much joy to my life. My wife’s nonchalance and positivity when I told her the news after Raph’s condition stabilised was incredible and really helped me to come to grips with it all. Yet for many weeks I felt guilty about my initial internal reaction in that first half hour. I’ve come to realise that we can’t blame ourselves for what our gut feeling is, especially in times of stress. The only thing we can control is how we react to these emotional reflexes. Is it something to be ashamed of that I felt a wave of anxiety on learning that Raphael had Down Syndrome? Of course not. It’s a perfectly normal reaction in the circumstances, and something that I had no control over. It’s what I do now that the dust has settled that will reflect my character.
I can say all the nice things in the world about having a beautiful boy with a disability, but it’s how I respond to the realities of the situation that really matters. It’s important to realise that I didn’t let Raph down by being scared in that first half hour and not to dwell on something that doesn’t define me in the slightest bit.
Raph’s heart disease has already given his mother and I a world of grief, and his Down Syndrome will present countless challenging moments over the years to come. It’s my job as his father to sacrifice my own comfort and convenience to make his life, and the life of his sister too, as fulfilling and happy as possible. The going will get tough from time to time, but I can already see in his chubby little face that a lifetime of cheerfulness awaits for him and me both, if I play my cards right.
To read our introduction and background story of our son and life with Down Syndrome, click here
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