When I was younger I had my life and family mapped out.  I would meet and marry the man of my dreams, and fall pregnant with ease. 

Following a textbook birth, we would breeze through a divine few months of new-baby heaven.  A perfect toddler and child, my little angel was going to be ridiculously beautiful, with intelligence off-the-scale, a sporting phenomenon, joyful around adults and popular with peers. 

My plan didn’t start off too well with an ill-fated marriage that lasted less than two years.  After several years in the wilderness I finally met the man that was put on this earth just for me. 

We eventually fell pregnant but not before many agonising months of tests and uncertainty. 

I started to ponder excitedly over our future child. 

I still had faith in my fairy tale whereby my child would be remarkably fantastic, but I allowed myself to become a little more realistic. 

I conceded that it didn't matter if they were not the most gorgeous-looking child, the top of the class, or a trophy-winning athlete.  I acknowledged that child birth was going to be painful, and that motherhood would be draining and life-changing. 

However, my optimism remained intact and I felt, like most mothers-to-be probably feel, that I was immune to the heart-breaking and life-changing scenarios that we are only vaguely aware of, in the periphery of our lives.

When I was due to give birth, I remember the age-old phrase of 'as long as they are healthy' making a few appearances, but this was just lip service and we didn’t really give any consideration to what the words represented, or the alternative.

The moments that followed Jenson’s birth defined the rest of our lives.

After a flurry of panic, machinery and swift moving doctors, my bundle of blue and grey bones was placed in my arms.  He gazed up at me and my life was complete.  I had my movie-moment: I cried, my husband cried, the baby cried.  It was a cacophony of delightful bliss and mounting anxiety.

He was rapidly surrounded by a gaggle of specialists.  The first, most noticeable thing was his birth mark; a squiggly purple blemish that patched its way from his foot up to his buttock. 

It will always stay with me that my first thought was will he get a girlfriend?  Little did I know that my initial anxiety over this unsightly imperfection would soon be eclipsed by much more onerous concerns.  I often reflect back on how shallow this thought process of mine was, but I see that it represented my pre-motherhood naivety to the special needs world in which we now live.

As we counted Jenson’s fingers and toes and drank in our brand new son, we soon noticed the distorted positioning to his left foot, and the unnaturally clenched and overlapping fingers on his right hand. 

As he opened his eyes to gaze at his mummy and daddy for the first time, we noticed that his right eye was larger than his left, and he had asymmetrical features. 

When he didn’t take naturally to feeding, his high palate and very narrow mouth were brought to our attention.

The list of medical concerns grew as the hours and days went on.

Nevertheless, we left the hospital a few days later in a state of hazy bliss to embark on the start of our new life as a family of three.

For the first few months, we lived in a mist of new baby fever where our new little darling was our entire world.  The numerous hospital appointments, and well-meaning health visitors, were merely a rude disruption to our otherwise perfect family life. 

The unrelenting referrals, appointments and tests started to become tiresome, with professionals poking, prodding, photographing, postulating, prognosing and pondering. 

We tolerated this parade of strangers with the underlying confidence that soon it would just be a bad memory and blissful family life would be resumed.

In a world where everything was new to us, we had no idea how far from the ‘normal’ new-born arena we were.

Alas, Jenson’s seemingly isolated problems didn’t simply disappear, as I had innocently anticipated.

Looking back over that time, it seems incredible that we didn’t recognise or give credence to any consideration for something more onerous.  I look back and see how naïve we must have seemed to those on the outside. 

My husband and I had been existing in a bubble of perfection: Jenson had his little problems that we considered to be simply a transient phase that we needed to endure. 

I don’t remember us having any conversation in the context of ‘what if’; we genuinely believed every little problem Jenson had was a compartmentalised issue that would resolve itself, and that each was mutually exclusive.

We continued to address his problems with the attitude that they were finite and fixable, and no one, not even health professionals, suggested that we should prepare ourselves for an alternative scenario.

Amazingly, we continued in this manner up until Jenson’s diagnosis, at 13 months. 

Suddenly everything fell into place and all of his individual issues could be attributed to an extra little rogue chromosome in each and every cell of his body. 

As much as we felt like we had been hit by a truck, we also felt a sense of relief for having a reference point, and an explanation.

I see now that the journey through the first 13 months of a pre-diagnosed Jenson was a gentle gradient into the world that we now live.  It was a kind and temperate exposure to the truths and tears that we have become accustomed to.  

Our world as we know it is so far removed from the ordinary world that we could not have survived unharmed without that gentle acclimatising journey.

Our reality now is a world of special needs, hospitals, therapies, funding, education plans, mobility aids, meetings.  But we do normal things too! We go on holidays, we go to the park, Jenson goes to nursery, we go to work, we play with train tracks and diggers, we splash in the sea.  We just have our own bespoke and individualised ways of doing these things.

The bottom line is that this is all we have ever known, and this life was somehow divinely chosen for us.  We are not in a position to reflect on how differently things might have ended up, or how much easier life could have been.  We are not interested in these scenarios; this is our life and this is wonderful.  

These are special times with a very special child.  We cherish every minute of Jenson’s life, in spite of, and because of, his special genes.

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