It has been a mixed bag of a week, including some great times with the kids; emotional and physical tiredness; brain fatigue; my worst seizure since early May; a visit from a different wing of Garden Force; and, a warm welcome from our new neighbours.
My big seizure happened last Sunday. I had pushed myself a bit too much (it really doesn’t take much) on Saturday and then didn’t sleep very well that night and got up relatively early on Sunday. It was also just a week since chemotherapy ended so my strength, energy levels and immune system were weaker than usual. Plus, the emotional upheaval of moving (see 150 Not Out) can’t have helped.
I had been sitting in the garden watching Garden Force in action. I popped into the house to see where Jennifer had gone and as I entered the living room and found J, I felt my leg lift up. Fortunately, one of the recliners was nearby and I made the couple of steps to reach it before the seizure started in earnest. It reached from my toes to my neck, the furthest the seizures have travelled since 1 May.
I told Jennifer that it was Mammy’s dancing leg again. She watched it from start to finish and said in the middle: “it looks more like a square dance”! I think she meant that square was the shape that my leg was making as it jerked. As far as I’m aware, she doesn’t know what a square dance is! Nevertheless, it made me laugh in the middle of a Doozie.
Afterwards, I felt very tired and down. It is not news to me that I probably won’t ever again be able to look after the kids, and Leo in particular. It just hit me hard in the middle of emotionally challenging times. The week started in the new house and will end tomorrow with my brother’s birthday (more on that later). Oh, and I now know the dates of my scans and results so that’s something else to look forward to!
Freedom of Expression
The kids seem to have settled in well. Jennifer was a bit too excited to go to sleep on the first night so she helped me put away my clothes. (“I can show you how to fold that, Mammy, if you don’t know how”!) I think she also needed reassurance because she’s spent the last nine months on a single mattress in my parents’ bedroom so always had someone on hand immediately. We had a few false starts with getting her to sleep over the first few nights but now she seems fine. (Who wouldn’t be fine with a slide down from her mini-cabin bed?!)
Leo, meanwhile, has already made his mark so the place already feels like home. He poured a jug of water on our bedroom carpet on the first morning. By the end of Day 3, he had executed a small wee on our bedroom carpet and had made marks with his hands, colouring pencils and chalk on a few walls. He attempted to clean the marks on the wall with wet wipes but that only smeared the marks further! “Uh oh,” he said. Quite!
Jennifer and I spent last Saturday morning making this modern art mosaic, which is, I think, a contender for the Turner Prize:
Does anyone remember this tiny lego-like stuff and, if so, what it was called? I have kept it since I was about seven but can’t remember what it’s called.
The kids love being outside in the new garden, particularly playing with the spray attachment to the hosepipe. We can see almost all of the garden from our dining room through the windows on three sides. The garden is secure (even Leo-proof!) so there’ve been a couple of times when we’ve finished our tea at the dining table watching them play on the grass together. One such time they were playing in their wellies and either knickers or nappy! Watching and hearing them play brings me unbridled joy. Speaking of dining, I’ve eaten my tea at the table every evening since we moved in so that’s a week of success in that regard! I’ll take any success I can muster.
Freedom of Movement
The Hobbit House is accessible so that I can get around to every room (it’s why we bought it after all!). I put Jennifer to bed on the first night, which is the first time in many, many months that I’ve been able to do so. I’ve had a shower every day so far, walking in and sitting on my new shower seat in the en-suite. The regular showering (Ma and Pa’s shower is upstairs) has been liberating and luxurious, despite the Silver Phoenix* slightly underestimating the size of shower mat needed:
The lack of stairs means that I can move around more rooms. I found out pretty soon that it is a good thing as it’s encouraged me to walk about the house a bit more. It has also contributed to me being more tired even when all I’ve done is stay in the house all day as I’m doing a lot more walking. A combination of all of the above meant that I spent the earlier part of this week needing a lot of sleep!
Freedom of Labour
The second Garden Force made up of a lovely family, one of whom worked with my Dad and Graham in the rain to bag up the cuttings and cut the tops off a few of the many conifers in our new garden! Along the way, they found giant- and regular-sized traffic cones:
It’s a fuzzy photo but shows the size in comparison to my Dad (who is about 5 feet 11). Traffic cones. This is as exciting as my life gets now!
They made me think of the traffic cone my new friends and I brought back to college as a souvenir shortly after we started university. I think it was after the Law Society’s all-night cocktail party on a barge (we lawyers know how to live it up). Maybe the lady who lived in this bungalow before us was a party animal!
A Warm Welcome
We’ve had a card, plant and open invitation to pop in at any time from the couple in the bungalow to the left of ours. The couple in the adjoining bungalow to the right of ours have been friendly since we met them shortly after buying our Hobbit House. Graham was talking to the lady a couple of days ago who wished us well in our new house and asked how I was. We hadn’t told them about the Squatter (it’s not exactly an ice-breaker is it!) when we first met them, we just said that I have mobility problems (which they could see with their own eyes!). When Graham saw the husband a few weeks ago, he said they’d subsequently come across the article about us in the local newspaper, which is still online. He has been cutting our front hedge ever since we bought the bungalow.
Tomorrow is Not Another Day
As stated above, it’s my brother’s birthday tomorrow. He would have been 39. I always feel a bit antsy in the build up even though the day itself is usually as ok as any other day without him. My very slow waking-up routine usually involves checking Facebook before getting out of bed. Often I check the “On this day” section on Facebook. This morning was no exception and I was taken aback by what I wrote on this date last year. If I look tomorrow, I will expect to read something that I’ve previously written about his birthday and will brace myself. This morning, however, I wasn’t expecting anything.
“On the eve of what would have been Graeme’s 38th birthday, and a decade since we last celebrated his birth with the legend himself, here’s a selection of photos that I found a couple of weeks ago. At times, Leo looks a lot like his uncle and that is paradoxically both a comfort and a painful reminder of the huge hole in our lives.
“The hardest thing for me after Graeme died was learning how to look forward with hope rather than just surviving and plodding along. But, as the lonely child left behind, I didn’t want to waste my life as I felt guilty not making the most of life while my brother didn’t have the chance. So I left the job that took up sometimes 110 hours a week of my life and the rest is, as they say, history: although I sometimes feel a sort of survivor’s guilt, I mostly feel that he would be pleased and proud!
“Graeme’s birthday isn’t really any harder than any other day – there can still be times on any given day when for seemingly no reason, waves of grief wash over me and I feel almost paralysed with fear at the realisation that we really do have to continue going on without him! And yet, go on we must, not least because there is much to be grateful for, including my amazing parents, husband and children, the best friends money can’t buy and the most wonderfully generous welcome to me and the Rents into the extended Cole family!
“While the biggest heartbreak for me is that Graeme didn’t live long enough to meet his brother-in-law, his niece and now his nephew, they are the best reasons to look forward with hope and excitement for the future. So they represent the hardest thing about no longer having Graeme with us and the easiest way to get through the days without him. To me, that about sums up the strange world of permanent grief: things are, at the same time, both better and worse because of the loss….“
I immediately burst into tears when I was reading it. I think part of my sorrow was that it’s always upsetting to think about our loss and how it feels not to have him around. The strongest feeling I could identify, however, was “what a difference a year makes”. In recent years, as I mentioned in 150 Not Out, I have been genuinely excited for the future. Little did I know when I wrote those words that I have a ticking time bomb in my head. I haven’t lost all hope of enjoyment in the future but knowing that the bomb is going to explode so as to shorten significantly the length of my “future” has changed my hopes to some extent. They have become more short-term and daring to hope that my future will stretch for as long as possible to create memories with my family.
My own tumour has made me think of my brother predominantly as someone who died from a brain tumour rather than him as a person, for which there is much to celebrate even as we desperately wish he was still here. To finish on a colourful and uplifting note, as I’ve been writing this blog, a short fat section of a rainbow has been revealed as a full arc. A rainbow is a colourful and beautiful sight. It has reminded me how my brother should be remembered: vibrant, colourful, interesting, wonderful and sparkling with almost a magical aura:
So here are a selection of photos of the almost-birthday boy in celebration of the fact that he lived:
*My silver-haired hubby keeps saying he is “finished”, “done in” and “shattered” and then rises each day like a Phoenix from the sleepless ashes.