Hello everybody,
It has been another slow day at the office following an even slower wake up this morning. But they did manage to squeeze me in another bath which certainly left me feeling clean if only slightly more awake. Louise and I tried to make the most of what will inevitably be the last of our truly private time before my return home tomorrow.

As the title suggests, my taxi/ambulance is booked to take me home at two o’clock tomorrow. With this booking comes mixed feelings.

I am somewhat relieved to be going home at all after embarking on my little holiday with part of me feeling like I had got a one-way ticket.  Excitement features largely at the prospect of being able to spend most of my time with Louise and Oscar without someone having to get in the car or being limited by Oscar’s dinner or bathtime.  Throughout the course of my stay, my times of greatest upset have been caused by the departure of one or the other, usually both.  The sight of either leaving sparks memories of the first extremely happy few months after Oscar was born, or reflect on what I have missed or been unable to deliver as a husband or father because of MND, or ponder on their future.  Louise told me that Oscar is still running down the hallway to my bedroom shouting “da-da” and I can’t wait to be back to see it.

But I have been at the hospice for two weeks under the care of their professional staff.  My return home means trying to organise our merry band of carers, calling on family and friends who willingly sacrifice days, even weeks, to fill in slots of time on our kitchen calendar.

Still, despite the emotional rollercoaster which seems to move ever faster, I can’t wait to be home.  The next time I write to you, it will be from my chair, in my front room, whilst watching Oscar play and Louise feeding me grapes (well maybe not grapes because they make me choke).
Until then, much love,
Neil x 

It’s sad to read Neil talking of his lack of ability as a father. I’m glad he places this firmly at the blame of motor neurone disease.  He had only two months of being a great father before the first notion of the disease came to his thoughts.  

After just two weeks of Neil being in the care of professionals, my confidence was lacking in my ability to look after him again. As much as I hated having routine in the house, it meant I didn’t notice the changes in Neil so much, and a break from that routine had me wondering if I would cope again. I remember having mixed feelings between nervousness and the need to have the two of them under one roof again.

Neil couldn’t wait to have Oscar run into his bedroom at home of his own accord, even if it were just for five seconds in and out, than have him brought to the hospice for forced interaction. I had found it difficult to have Oscar there, as he would lose interest very quickly, despite bringing toys and DVDs, he would be interested in seeing Daddy for a few short minutes and then get bored. Always at the back of my mind was the feeling that no young child should have to visit their parent in a hospice.

Despite my trepidation and lack of confidence, I felt good that he was coming home, and I had plenty people around me to hold me up. – Louise (2013)