Plus ca Change

Now is the time, after Mum’s funeral last week, that the harsh reality begins to sink in, that we will not see her again. As we return to work, it seems odd that life continues as normal for everyone else, while our  world has shifted on its axis. I have been feeling rather numb, so I have been operating on auto-pilot, which is probably the mind’s way of coping with the shock and loss. My mind has also been playing tricks on me: as we live over two hours away from Mum’s home, it has been fooling me into believing that everything is normal and that she is still at the end of a phone, whenever I have anything that I want to report or discuss. I know that it is still early days in our grief journey, but I keep getting caught out by the waves of real sorrow that overtake me.

Today my sister and I are heading back to Mum’s house and we will collect her ashes from the funeral director, so today is another big step in letting her go. Once again, I know how fortunate I am that I will have my big sister by my side. Although we were only together last Friday and we are speaking at least once a day at the moment, it still seems like forever since I saw her last and I am really looking forward to seeing her later. Only my sister truly understands my loss as Mum’s daughter and we do not have to pretend to be brave for each other.

Before I drive to Mum’s house, I am taking Joshua into school as I am meeting with his teacher this morning for 6th form Open Morning. It will be useful to have the opportunity to find out more about their plans for Joshua during his final year of school. I am adjusting to the reality that he will be leaving school this time next year, when he is 19, and I am sure, with the right support, we can find him the right place for the next phase of his life.  I am hoping that we can find somewhere that replaces the hole that school will leave in his life, so Monday to Friday 9-4 pm would be ideal. This is just one more change that we will have to face together and with the right groundwork, I am certain that we can adjust and start to look forwards, rather than backwards, which is always more comforting as it is familiar.

It does not matter that I am not very good at change, because change is thrust upon me, whether I like it or not. There is no point in me fighting it, as that only makes things more difficult, I need to simply embrace it, pick up the pieces and move on.

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A Difficult Journey

Yesterday was a long and emotional day: it began at 5.30 when I left home to go to my sister’s house to collect her, to drive onto our Mum’s house. There , we were seeing a potential caterer at church – the first time we had been in Mum’s ‘domain’ since she died -, signing some paperwork at the funeral director , making an appointment with a solicitor and finally meeting with the Minister to plan the services at the crematorium and then at church. So it was a full on day, packed with emotion and difficult conversations, and throughout it, I was ,once again, relieved to have my sister by my side. We were able to build each other up when we get upset as nobody understands what it was like to be a member of our family better than she does. After all of those meetings and that decision-making, we were wrung out. I dropped my sister back at home at 7 pm and drove on home myself, getting back just before 9 pm.

I usually listen to Radio 4 in the car and so I was sucked in by the programme ‘File on 4’ last night. It was called ‘On Who’s Authority’ and it was detailing families which contained adults with learning difficulties and was exposing the battles that they were having with Local Authorities in trying to get heard in Best Interests meetings for their vulnerable loved ones. I knew from the outset that it would be a tough listen, but I could not turn it over : amongst others, it featured a 50 year old man with autism and epilepsy who had lived with his Mum all of his life, until she became 70, she had admitted that she could no longer cope and he had moved to a care home. His brother became his Deputy and ought to have been consulted over any changes that were made to his care, but social care made decisions without any consultation : he was moved from his care home to a supported living flat, on Christmas Eve, as his care home was closing, with no transition and there was no furniture in the flat as it was not ready, and the brother was powerless to intervene. I was horrified as families were ignored and were shut out if they made any complaints, their access to their offspring was limited as a punishment for making a complaint and none of the Provisions of the Mental Capacity Act were being adhered to.

Clearly after the day of raw emotion that I had already had, this radio broadcast reduced me to tears very quickly, as I worked out that when I was 70, Joshua would be 35 and he had no brother to be his deputy to defend him . We had been busy developing a funeral that Mum would approve of and we are old and capable enough to pick up the pieces of our lives, once our grieving is finally over, but how will Joshua cope when we have gone? He won’t understand the concept of death, he will just see that we are no longer around for him. This mourning that we are going through, though painful, is a natural process of adjustment, and Joshua will not have the capacity to grieve. One of Mum’s instructions to me was that we had to write a will, to provide for Joshua’s future. It took us years to come to terms with, but two years ago we finally went to the solicitor and made our will and we set up a trust for Joshua, appointing trusted friends and family to put his needs first. He will be provided for financially , as our only heir, but last night I began to worry about his emotional and practical needs once we , his parents, can no longer take care of him. It sounded from the radio as though he may well need a deputy or ‘warrior Mum’, as the radio called them, on his side, so I will need to attend to that once we have survived Mum’s funeral.

What if….?

Yesterday was A level results day and so all over the country there were families who were celebrating that their teenagers’ hard work had paid off and they were taking the next step on their journey, and going off to University in the autumn and there were also families where dreams were shattered by disappointing A level results and new plans had to be made. It made me reflect back on my results day 31 years ago but it also made me sad that this was experience that Joshua would never have.

I am so proud of all that he achieves everyday; he takes so much in his stride and comes out the other side smiling and he has great social skills. But he is never going to have any academic success nor head off to college with his peers and I am sad for this missed opportunity. But I accept that Joshua will not have that regret, he will not feel as though he is missing out, that is simply my projection onto him because I loved my years at university. Similarly, my husband regrets that due to Joshua’s right sided weakness that he has not fufilled his athletic prowess, while watching the athletics in Rio at the moment, he often muses which sport Joshua might have excelled at given his tall, slim physique. Again I do not think that Joshua is a frustrated long jumper, my husband is simply speculating over what might have been.

But Joshua does have opportunities to fulfill his potential, both at home and in school. If he shows any interest or aptitude for something, then he is encouraged fully to develop his skill or interest further. Joshua may not acquire a string of qualifications or a shelf full of trophies, but we could not be more proud of the young man that he is becoming and the outlook on life that he adopts. we never know quite what is around the corner, but whatever it is, Joshua will embrace it in his unique style.