Coming to terms with diagnosis

The sense of sadness and loss of what could have been soon gets pushed to the side as you have to deal with the practicalities of where you are now.

Uisneach hasn't changed.  He's still the same lovely and loving little fella he was before the diagnosis.  He still has the same personality.  He still likes to laugh and play his little jokes.  He still has this great sense of wonder about him.  Wants to touch and feel everything.  He still loves playing with Dads guitar.  He still loves going swimming.  He still wants to do as much for himself as he can.  He wants to hold the cup while drinking.  He wants to feed himself at meal times.  And he is progressing in his development the whole time - even if only in tiny steps at a time.

You start to realise that the sense of loss and sadness that you felt or still do feel is more about you than him.  You are grieving something that was yours - not his.  It was your planned future for him.  He, on the other hand, is living the only life that he knows.  And at the moment he is happy.  So in that sense we should be happy also.

As parents our role is to try and ensure that Uisneach reaches his full potential in life.  And we know that we can rely on our wider family for support in that.  We now need to be his greatest advocates to ensure that he gets the services that he needs and deserves.

Uisneach's support needs cover a range of areas - physiotherapy, occupational therapy and speech and language therapy.  He still has to learn how to crawl and walk.  He needs work with his fine motor skills.  He needs help in learning how to communicate more effectively - through both speech and sign language.

Thankfully all of these issues are being addressed by the multi-disciplinary team at Enable Ireland.  And it is great to see that even in the relatively short time that we have been attending he has made considerable progress already.

It's going to be long and difficult journey.  There will be many ups and downs along the way.  But we are hopeful that the difficulties faced in the months and years ahead are not going to be insurmountable.