It’s been a busy week, sad in some ways happy in others. I have had my daughter and her family here since last Thursday evening and that has been great. We have had laughter, a lot of time together and traveled back and forth to see Ray. We had the spicy chicken BBQ at Trev’s on Saturday night and also had the rest of the family here for a mixed BBQ Sunday night. Now I have our granddaughter for two days to spend time with her cousins.

So life comes with lots of compensations. The sad news is that Ray had a seizure last week and is still not really walking and will need a lot of therapy to get him back onto his feet. The really good news came at 4pm this afternoon. He has been transferred to a small geriatric unit close to us where the rehabilitation will take place. This is an 80 bed former cottage hospital so very different to the large hospital he has been in. They will work out a rehabilitation plan and work on getting him up and eventually home.

My worry still is that he will have another stroke. I know it is six years since his last one, I also know that in 1999 he had two four weeks apart so there is always that underlying fear. He is so much reduced in energy and capability since the middle of May. I find it hard to see the difference. It really shows that every stroke is a stroke, a cutting off of what life was like before and a re-adjustment to the new situation. He is still on thickened fluids and pureed food which is another retrograde step but I dealt with that before so will do so again. With a little imagination it is not as bad as it sounds.

The hospital visiting has been hard. Sometimes Ray is sitting up, awake and alert, other times he is droopy eyed and more asleep than awake. He doesn’t show a lot of communication skills now and that is a problem with sitting there for two or three hours. I have been able to use the family as an excuse for shorter visits the past few days so that has given me a bit of a break. I do so want him to respond, to look good, to act happy to see us etc but know that that is not going to happen. As usual to Ray we are just passing through his “room” the quiet place where he now lives.

I took Shirley to see Mum on Friday and we had a bit of interaction. The activities officer who went to school with one of my sons was making bacon and cheese scrolls so we got to watch and Shirley got to sample the product hot from the oven. It was Mum’s 93rd birthday on Friday and I had taken in some mousse that Trevor makes and Mum absolutely loved that, I could tell by the “yum” noise she was making! As she too is on thickened fluids and pureed foods only it could not be a birthday cake this year.

A few people ask me how I cope and I tell them the support and prayers of my friends helps tremendously. In my situation it is easy to feel so alone and as if no-one really knows what you are going through. In my six years on Strokenet I have come to realise a lot of people do know what I am going through as they are traveling the same road themselves. A lot of others have passed this way before me and when I am gone others will continue to come on, sad and lonely, looking for understanding, information and support and ultimately, if they give of themselves will make friends and become part of this great community.

I have been involved in self-help groups before but this one is definitely different. We all come on looking for “help”. We do have the build-up of emotions and the need for support and we do feel despair and hope but eventually we also feel relief when we settle down and accept the “new normal” we find in our lives. No one can live with uncertainty forever and so we learn to live one-day-at-a-time lives.

We seek help from the medical community and get pills and potions, therapy and counseling and reconcile ourselves in the end to the fact that no-one know really what is happening, at the best they are making educated guesses.

We have had more pre-wedding discussions and they have today posted invitations to “see Trevor and Edie take their vows” to their friends and more distant relatives. There is no reception, now only a “close family” meal afterwards. It is hard to say what this will all be like but the good will is there to make it all special. Edie will soon have her dress, the little bridesmaids and groomsmen will have their special clothes, the Mums will too.

That special person Pa Ray will appear on the day whatever that takes to achieve. At least that is more of a possibility now than it was a few weeks ago.