D – DAY (Diagnosis Day)

Today our paediatrician delivered the news to us that all parents trust to be the news that only other parents get. The scenario that you very briefly let your mind dwell on when you think about starting a family, when you go for your first scan, and when your baby is placed in your arms for that first time. You don’t dare consider that it might actually happen to you, for that would be too much for our minds to deal with. Well it happens, and it really has happened to us.

I would happily freeze time right now and exist in this little joyful bubble. In a kind, gentle world where Jenson doesn’t know any pain or cruelty and where we haven’t had to deal with the harsh truths that lay before us.

In a world where our little boy is not so different to my friends’ little one-year-olds. He giggles when you blow raspberries, he grabs your glasses off your face, he chuckles when you play peekaboo. He knows his own name!

But the reality is that Jenson’s path leads to an unknown destination, it also has an indeterminate number of obstacles.

We are only just coming to terms with this reality.  Our initial reaction is to hope that life from here onwards doesn’t have to be an uphill struggle against the elements, but continues in the way we have known so far in his short life: to be a beautiful journey through unknown territory; which isn’t so far from the journey that we had signed up for.

Despite being told it is entirely random and nothing we did could have affected the outcome, I blamed myself.  And of course, my husband blamed himself.

Anger, confusion and despair; the emotions intertwine into a cacophony of sadness.  The worst for me is the jealousy.  I have already started to observe life around me with an unwelcome perspective – all those other babies stumbling around on their little squashy legs, learning to walk and run and slide down the staircase and climb onto the sofa, and hold their own milk bottle and use their own spoon – until today I simply thought that Jenson would achieve those things, he just needed a little extra time.  Wrong.  He may never achieve those things, we cannot be assured any longer by the naïve assumptions we have previously made.

It is true to say that this raw, emotional experience has attuned me to the important things in life.  The love and kindness that has already come my way has been overwhelming; friends and family showing solidarity and humanity in abundance. Exposure to pain and sorrow certainly exposes you to a greater depth of emotion at the other end of the scale: overpowering appreciation for the relationships, friendships, and most of all, the beautiful child that we have created.

We don’t know what life has in store for Jenson aside from the inevitable hospital appointments, therapy and treatments, but one thing will remain constant, and that is the radiance and pure beauty that this little boy has been born with. The love that he gets he gives back tenfold.


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I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' PA, therapist, clinician, secretary, taxi, nurse, and in my spare time I am trying to be a good mummy. I work in an audit role for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

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