Bake and Share

Today will be the first parent coffee morning at school of the new academic year. I am hoping that it will be a morning to see old friends, but also hopefully some new faces will join us, some parents perhaps who’s children have just joined the school or some who’s situation has changed and now they find themselves free on a Friday. I am delighted that some of the core attendees have told me how much they have missed it over the summer, as we last met on the last day of term in July which seems forever ago. It is an opportunity for us to gather together and to let off steam and to share tales of the summer holidays, amongst an audience who understands the stresses of that long summer break with a child with special needs.

The cakes is a treat and is a talking point, but it is not really what it is all about : it is more about sharing and supporting. listening and talking and just being there for each other. The parent coffee morning will hopefully be a legacy that I will leave behind when Joshua leaves school next year and I have been talking about succession planning for a while now, as I really want it to continue once we are no longer around. So far there have not been any baking volunteers, but as I say, it is not really about the cake and biscuits, it simply needs the will to continue to meet and some nudging of school. I plan to visit sometimes in the future, to catch up with  friends and see how everyone is doing, but it cannot be my party any longer. But we still have until July – another ten coffee mornings – to hand over the baton to somebody else, who may do things differently to the way I have done and perhaps it is ready for a shake up, to attract more parents.

There is another coffee morning in 2 weeks time, but this is a whole school event and not our usual parent one. It is tied in with the Macmillan fund raising national coffee morning and the whole school will get involved, with classes baking and donations will be sought. Other parents from other special schools within our Trust will be invited too, so that will be a much more significant affair. Again that is not my party and although I plan to donate a cake and will send Joshua to school with some cash to donate,  I will be away for a long weekend for my birthday. Baking makes people smile and happy, and this well promoted national fund raiser is for a great cause too, so everybody wins if it brings people together too.

Right must dash, I have some cheese straws to make!

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A Day Well Spent

I think we overcame a huge hurdle yesterday, with Mum’s first birthday without her around, and it being a significant birthday too. It was not easy but we survived her 80th and I felt surrounded by love and support all day long. I felt empty when I woke up and unsettled with my grief. It was raining and that seemed the right weather to match my mood. I took the dogs a walk to shake off my gloom and i headed towards a park that we used to picnic and walk in, but I drove passed the entrance I was looking for as it was more overgrown than I remembered and so I parked in a rural car park , unloaded the dogs and started walking up a track that I had walked along many years ago. After a gentle climb of around 5 minutes, I stumbled across a small  homemade chapel where I was invited to sit a while and light a candle  and I did both. It was such a peaceful spot as I looked out over the misty hills and I felt so much better just being there. I did not know that this chapel was there and I felt that something had guided me there as it then changed the tone of my day as it made me feel better as I read this bible passage on the wall :

” You shall go out with joy and be led out with peace; the mountains and hills shall break forth into singing before you, and all the trees of the field shall clap their hands”

I went on to walk through the hills with a smile on my face, albeit with tears in my eyes, and with gratitude for having known Mum, rather than focusing on our loss.

Soon after I got back to Mum’s house, my sister arrived and so we hugged ,cried and laughed together. We achieved a lot yesterday : we survived and celebrated her 😯 th birthday and we finally made a start on clearing her house. We want it still to look lived in and so we agreed to tackle the kitchen as what felt like the least emotional room. But while I waited for my sister, I opened the kitchen cupboards with her baking tins and bowls in and I shut them quickly as even they had memories. I tackled her food cupboards instead ,  rescuing what we could use or that a food bank would use, and throwing away a lot of opened packets and half-used bottles. It was rather satisfying to make some progress but it also showed us how much work there will be to do in the coming months. If getting upset by throwing away a half used jar of mincemeat – as her mince pies were unbeatable -then how much harder will it be to look through her wardrobes and photo albums for instance, but I am hoping that we get better at it and perhaps become more discerning.

We walked down Mum’s high street and we ate lunch in a cafe that she loved. In the afternoon, the sun came out and we sat in the garden and we invited one of Mum’s friends around to join us for a cup of tea as we knew she would be missing Mum too. All in all we think that it was a day that Mum would have approved of and that she probably had a hand in too. Happy Birthday Mum x

birthday chapel 1Birthday chapel 2

The Passage of Time

I spent last night at Mum’s house and apart from being confused as to where I was when I woke, I slept well. On this wet, grey 11th of September, we think even more of Mum as this should have been her 80th birthday.  We will mark it of course but it simply cannot be the celebration that we had planned and hoped for, as the birthday girl will not be here. I told a client that this should have been her birthday and quite rightly, he replied, ‘It will always be her birthday’.

One of the surprisingly hard things to do at her house, is to turn over the pages of her calendars to a new month. It sounds easy enough but marking the passage of time, another month when she is not living here, seems significant as I leave August behind and move into September and another season. September was always a special month, with our two birthdays and then when we were younger, the start of a new school or university term, it was a month of new beginnings. I am hoping that September 2019 can also be a month of new beginnings in our journey of grief. One when it starts to feel less raw and we can start to not feel as though we are on an emotional tightrope all the time. This is the first significant date  when she is not around, but then there will be my birthday without her phone call and Christmas without her being a helpful, considerate guest at our house. Nothing will ever be the same x

Life Imitating Art

I am lucky enough to only live 2 miles away from my workplace, so most days I come home for my lunch hour. I took the dogs a 20 minute walk before I came home and then I made myself some beans on toast for lunch. I flicked on the TV, for noise mostly , while I ate and I got drawn into a daytime soap opera story line : a couple had a baby 2 months prematurely and he was whisked off to Special Care immediately. While they were still in the delivery suite, they were in shock as they were not expecting him so early, and they called him Joshua as they decided it was a strong name and he would have some battles to fight. I was then hooked and I watched with horror, and familiarity, as they visited their son in an incubator, all connected to wires and monitors. Then the Doctor came after scans, and told them that he had suffered a massive bleed on the brain and that he would be brain damaged and so compromised, that they recommended turning off the life support and letting him go, to be continued….

This  felt like a familiar tale – other than the fact that our Joshua was overdue not premature and he had a stroke, rather than a hemorrhage – but I was gripped. We too had the SCBU experience and those all important, revealing scans which delivered some devastating news when our Joshua was 4 days old. But unlike on the soap opera, thankfully, nobody ever suggested turning off his life support and that he should be allowed to be released from a life with no quality to it.  It made me feel sick to even contemplate being given that choice and responsibility for life and death. Instead they delivered our news with no guarantees : he has suffered devastating brain damage and so he may not see, hear, walk or talk. We were told to take our baby home, after 11 days in Special Care, and to treat him like a ‘normal baby’ and see what develops. Of course we had no choice but to love him, care for him and see what he was able to achieve as he grew.

I often think that I would love to take Joshua back to hospital and back to Special Care, to show the Doctors just how much he has achieved in 18 years, as they will never know. they send tiny babies home with frightened parents, with a diagnosis hanging over their heads, but will never get to hear how that all worked out. I would also like to meet parents like us, who have just been delivered a blow, and to show them that it does not need to be doom and gloom and to give them some hope. If I had met 18 year old Joshua when we had been given his diagnosis, and seen what he has achieved and how much love and mischief he is capable of, it would have saved years and years of heartache and worry as he was growing up. I would like to offer that same glimmer of hope to other distressed parents in that daunting position, as at that painful time, you need all the reassurance that you can get.

9/11

I am expecting this to be an emotional week as Mum should have been 80 years old on Wednesday , so this will be the first big anniversary that we have had to face since she died over three months ago now. My sister and I booked the day off work some time ago, knowing that we could not concentrate on such a day and knowing that we needed to be together to mark Mum’s birthday. We had originally planned to meet up together for lunch and retail therapy half way between where we both live, but now we have changed the plan and we will be at Mum’s house together all day. We plan to make a start on sorting through some of her things but I insisted that we also have a celebration lunch out in her honour, and we are confident that Mum would approve of this plan – she would want us to get a move on on house clearing and she was never a fan of shopping!

Such an anniversary has got me thinking of past birthday celebrations, as we always make an effort to get together around birthdays in our family. Increasingly Mum did not want gifts that she had to find a home for, so last year, we three went to Harrogate for a weekend for her birthday treat and it was the best gift idea. We three spent some quality, fun time together and we laughed until our faces ached. On that trip for her 79th birthday, we were trying to persuade Mum to plan a bigger, brighter weekend for her 80 th celebration. She threatened to go abroad alone if we threw her a surprise birthday party. Yet now, here we are, without her – it does not feel real even now. I wonder how long it takes to properly sink in? I imagine that it is the brain’s way of protecting me from the pain of grief. Mum has appeared to me in two dreams now and again, I think my sub-conscious must be trying to adjust to the loss while I am sleeping.

The 11th of September for the last 18 years has always been a significant date in the news and for the families of the Twin Towers disaster, but in our family, it was always an important date and never more so, than now. As a child, Mum’s birthday was really exciting as it meant just over a fortnight until my own birthday – Mum’s birthday cards were never on display for long as they had to make way for my cards. This , our first year without her to celebrate with us, will be tough and emotional, but we will toast the very special lady that she was, together, and celebrate her life in style.

Shopping Trip

Now that Joshua is walking everywhere, he is able to express where he does and does not want to go, which is more challenging for sure. He has never been keen on looking round shops, though a quick visit to Tesco is always a fun part of our Saturday routine. Yesterday afternoon, my husband announced that he wanted to go to a mobile phone shop and my heart sank, as I knew it was not Joshua’s kind of outing. He was dozing on the settee when we were ready to leave, so that did not bode well and he nodded off again in the car en route, so he was certainly sleepy.

He woke when we arrived and was happy enough to walk between us, hand in hand. There was a comfortable settee for him to sit on in the mobile phone shop, but he only stayed there for a minute or so, he began to try to distract the staff who were talking to us – flashing his bare stomach, holding his hand over my mouth to stop me from talking and finally kicking my shins. So I relented and agreed to walk him around the pedestrianised town centre, leaving my husband behind. Joshua strode out happily, seeming to know where he wanted to go and then he dragged me into a Costa! There was a large queue and service seemed to be slow, so I sat him down at a table for four and took my place in he queue, where I watched him like a hawk. He sat beuatifully for about 2 minutes, sitting up tall, waving at people and smiling but then he was bored…

He spotted me in the queue so he rushed over to hug me and I told him to go and sit back down. To my surprise, he walked back towards our chosen table, but got distracted en route and began to stroke a lady’s hair in the adjacent table. I rushed over , apologised and sat him down again and took my place once more. He got up almost immediately and this time spotted a young girl’s ponytail and made a beeline for it, so I ran and caught him and brought him to a table next to the queue and I opened the orange juice that I had selected for him, hoping that would encourage him to sit still. By this time he had quite an audience and one customer helpfully told me that he was fed up of waiting and I agreed ‘we all are!’

Eventually I got to the front of the queue and placed my order of two teas and a slice of chocolate cake.  A man who’s job it was to clear tables, kindly offered to bring my order over on a tray, while I settled Joshua down for the millionth time. Once we were seated together,and aided by a chunk of cake, Joshua sat well and tucked in and I savoured my tea and got my breath back from all the chasing. During all of this time, my husband was still in the phone shop sorting paperwork. Once Joshua had eaten his cake and drained his juice, he stood up, ready to leave so that was my cue to drink up and get moving, as the chase was on again!

We found my husband still in the phone shop and he was ready to browse in other shops, while Joshua and I on the other hand, had had enough and were ready to head home. While I love the independent, mobile Joshua, I have to admit that shopping with him safely contained in his wheelchair was a much more relaxing shopping trip. He now votes very much with his feet and his big, black NHS boots.

For the Love of Dogs

Towards the end of May, our cocker spaniel, Ruby, had three puppies and we have two of them still living with us : Betty is staying here with our family but Arthur is staying here temporarily, until my niece is ready for him. They have brought such joy to our lives since they arrived, unplanned. Yesterday morning Betty sneaked through the door and came upstairs with me to wake Joshua and give him his porridge – the pups are so fast and slippery these days! I slid open his bedroom door and before I had time to wake him up gently, Betty was on his bed and licking his face as her greeting. I thought that might have been a rude awakening, but he grinned at me and giggled as she wriggled around on his pillow, delighted to see him. He responded happily to her greeting and then she gazed at me waiting to see if there was any leftover porridge for her.

As we are having new windows fitted, the house is in chaos with all doors and gates left open for the contractors, so all week, the dogs have come with me to work and stayed in the truck, until lunchtime when we have enjoyed a long walk together and another at the end of the working day and we have all enjoyed that  temporary routine.

This weekend, Arthur is staying with my niece so after work I drove to the station and walked him in to wait, on his lead. I loved the reaction that he got as he made so many people smile, even if they just walked by. But a large number could not resist his animal magnetism and came over to say hello and to stroke him, several saying how he had improved their day. One couple with special needs spotted him from inside a cafe and came rushing out , picked him up and began kissing him. One lady told me that she loved his long waggy tail and another asked if he could stroke him, then asked if I thought a dog might help him with his anxiety? I was very proud of Arthur and how well he coped with all this attention from strangers, taking it all in his stride. In fact, later, when nobody approached him for a while, he looked accusingly at passers-by as if to say ‘Hey, can’t you see how cute I am?’

So my experience yesterday proved what I already knew, that dogs make people happy, they bring joy to humans. Not only have our 15 week old puppies taken Joshua to their hearts, allowing him to stretch their heads backwards, as he likes to do ,with no retaliation, but  they are brave and open to strangers too, confident that they will be loved by everyone. This litter was not planned nor initially wanted, but the reality is that they could not have arrived at a better time as both comfort and distraction, and we will give them the best, most loving homes possible.