The Disability Diaries (The Life of J1) : We Just Don't Know?

We received J1's diagnosis (Diagnosis Day - Or Finding Out By Accident) when he was just over a year old.  I wasn't sure what to expect.  A flurry of activity through my post box started to occur, appointments for this, referral letters for that.  Most of the early appointments were investigative, to try and establish the extent of the damage that had happened to J1's brain.

Cerebral Palsy is massively wide and a broad spectrum in terms of consequences, but the long and short is it means 'Brain Damage'.  My son had suffered brain damage.  It has taken me years to be able to say those words; 'My son has Cerebral Palsy'; 'My son will never walk'; 'My son can't sit'.  When I first knew, I would sit on my sofa for hours taking a deep breath and attempt to say those words.  But they wouldn't come.  Only tears would materialise, as the words 'Brain Damage', 'Cerebral Palsy', 'Can't', 'Extent of the damage...' would roll around in my mind, confusing me, threatening to drown me in negativity.

I knew that I was going to have to learn to be able to say it, because I was going to have to tell people.  Work for example.  But even if I could get those words out, I knew that they would be followed up by questions.  Questions, questions, questions.  Questions that I did not have the answers too; 'How bad is it?', 'What effect will it have on him?', 'What have you got to do?'.  All perfectly predictable and reasonable questions but my answer could only be 'I don't know.'

And that was the answer that I came to hear a lot 'We just don't know.'  My questions were those that I was asked myself by others, yet I was only just in the stage of questioning the very same things.  In answer to 'How bad is it?' I was told post-MRI scan, that the damaged area was about the size of a thumb print, quite dark in colour and on the left hand side of the brain, the size and shape and colour indicated (although nothing is ever fully confirmed) that it most likely occurred during the last hour of the birth.  Really that is probably the most concrete information I have ever been able to glean.  The questions like 'What effect will it have on him?', 'What is the extent of the damage consequences?', 'Will he be able to eat / talk / walk / sit?' were all answered by blank expression of 'We'll just have to wait and see.'. 

The old saying 'Only Time Will Tell' became poignant in our lives.  As J1 was only just a year old it was difficult to even begin to comprehend what difficulties he may face.  We understood that it was looking unlikely that J1 would be mobile, he appeared to have absolutely no trunk / torso control, but you can't imagine the implications and challenges (over and above the 'He will need a wheelchair' and the obvious ones you hit, access etc) that we would find ourselves facing a few years on. 

However, because J1 was so young, to those who didn't know it was easy for them not too.  When we went out, he was small enough to still be transported in his normal baby car seat (reclined as far back as possible) and his buggy.  If we went places to eat I would take the Baby Bouncer to seat him in rather than be offered the use of a high chair.  In a way, it gave us a slower pace at which we had to come to terms with the diagnosis.

But of course children grow and it soon started to become clear that J1 was going to have massive physical disabilities, but by then we were into a routine of our new life, we did know that we could improve J1's head and neck control with lots of simple baby-friendly physiotherapy.  That we could start to work on re-training the messages from J1's brain to his arms to try and entice them out of the classic tight curled up position to encourage him to learn to grasp and hold things.

With baby-steps we entered the path of the unknown and learnt that you can still work on areas where you 'just don't know' if you can think positive and focus on can rather than can't.  Knowing and understanding the condition and accepting it was the first step to helping J1 to achieve the very best that he can.  It also meant that I had to start focusing on 'Occupational Therapy' that J1 would need rather than just 'Physiotherapy' and that would turn out to be one of the biggest battles of all.  Like most things for someone with disabilities as severe as J1's it would be an extra challenge, creating frustration and anger and needing a whole lot of strength to succeed.