Five Year Anniversary

Today is the five year anniversary of one of the toughest days of my life : on 4 March 2014, Joshua underwent brain surgery – a hemispherectomy – at Great Ormond Street and at this time 5 years ago, our small family was sitting in the ward waiting to be taken down to the operating theatre. We had stayed the night before at GOSH ‘patient hotel’ across the street and we had taken him out to Pizza Express for his favourite lasagne as his last meal before nil by mouth.

Joshua was the first of the cases to be taken downstairs and we signed consent for his surgery and anesthesia. I always find the speed at which intravenous anesthetic takes to take effect. It is almost instant – you are holding the hand of a lively but scared child and then in a blink, you lose him, he goes floppy and inert.  He was taken into the operating theatre and we were told to go away and amuse ourselves for the morning, but were advised not to sit in the waiting room for the whole time. So my husband and I went to a cafe for a coffee, neither of us felt like eating. Then we decided to hire bicycles and to cycle to Covent Garden as a distraction. The busy city centre traffic was certainly a distraction! Once we got there, we bought Joshua a monkey cushion as a present and we had a pancake as it was Shrove Tuesday that year.

Then we could stay away no longer, continually checking our phones for news, so we cycled back to the hospital and chose to wait on site. Then the news came that he was out of surgery, all had gone well and he was in recovery and we could go and see him. He was understandably still very drowsy and  was bandaged up, connected to tubes drains and monitors, but our son had survived the surgery. He was alive and next we wanted to hear his voice or see a sign that he was still the same boy, despite having had massive trauma to his already-injured brain, but we had to be more patient for that sign, but of course it came. The relief and the love that we felt for Joshua that day was immense. We had made a choice for him, to try to improve his life in the longer term, and that was a huge responsibility. But at this stage, we were so happy that Joshua was going to see his 13th birthday, the day after, and that the long agonising wait was finally over.

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Birthday celebrations Part 1

For Joshua’s birthday, I had booked tickets for 6 of us to see Abba Mania – an Abba tribute band and that was last night and we had such good fun : I had suggested that we dress up in 1970s costumes, so that was fun pulling together the outfits, blue eye shadow etc. Joshua did not dress up, but we did, both of his aunts did and our friend did. There were not many in fancy dress when we arrived at the theatre but we made a lot of people smile and the young girls sitting behind us had also made the effort so we were a cluster of gaudy colours , flares and sparkles.

We started our big night out with a meal together. Joshua was sulking at first as we had passed his beloved  Donalds, just unfortunately as I asked ‘where are we going Joshua?’ so he began pointing and when we drove passed, he was not amused and started to smack the car window and kick the floor in protest! But I had chosen a good restaurant and once his fish and chips arrived, he settled down to enjoy them.

We then walked through the city to the theatre, arm in arm, where a really helpful lady showed us to the lift as we were right upstairs in the gallery. The view was great and the show began almost immediately, so that was good as Joshua is not a great waiter. His eyes light up as the music and lights began and he was fully absorbed immediately. He would shout ‘thank you’ after the songs that he enjoyed most. The performance was really good, they sang well and we all sang along to the familiar tunes. Joshua enjoyed stroking his aunt’s hair next to him but Just towards the interval, Joshua was too tempted by the range of ladies’ long hair in front of him and so I had to be fast to catch him before he stroked it! A few times he was too fast for me and I had to apologise for him making them jump.

After the interval , Joshua  began to tire as it was his bedtime by then. He rested his head on my shoulder a few times but did not sleep and we all stood up and danced for the last couple of songs. Joshua joined in much better than I expected him to and he really seemed to enjoy it.It felt like a grown up Saturday night out rather than his more recent theatre outings to children’s musicals, which we have also loved but this was especially appropriate for his 18th birthday.

So Abba, thank you for the music, the songs you were singing, thanks for all the joy they’re bringing…..

School Days

I spent all of my day off in Joshua’s school yesterday: it was our parent coffee morning first, which I really enjoyed as everyone stayed all morning and we had some good conversations. We heard what a tough time a number of families had been having and that, for many, there was relief to leave February behind and begin March with new hope. We have no solutions there, but we do have sympathetic, empathetic ears and there was a sense of mutual support yesterday.

In the afternoon, I had a meeting in school with someone from school who is helping with transition, the manager of the new adult respite provision that we have chosen, our current adult social worker and our new social worker from Health, as apparently we will have two for a while! I did not even know that Health had social workers so that was confusing in the first place, but she has been allocated to us as Joshua will be funded by Health in the future. So she and the manager were there to learn more about Joshua, and the other three of us were happy to provide that background information. I was pleased when at the end of the meeting, the new social worker asked if she could meet him so that she knew who she was talking about, that was really encouraging.

As it was 3 pm, I had agreed to drive him home rather than his usual taxi, so I took her upstairs to 6th form. We found him sitting on the settee in his classroom; he spotted me and leapt up and ran across the classroom for a bear hug, eyeing the social worker next to me with some suspicion. He beamed and when I told him that I had come to take him home, he dashed to the doors and began to kick them to get out. I brought him back to gather his belongings and I distributed the leftover baking from the morning  to the staff and then we walked out together, with Joshua pushing his own wheelchair away.We had only sneaked out about 5 minutes early, but Joshua seemed delighted to be coming home and the Health Social Worker was able to see a happy, animated, loving young man and she even witnessed the door kicking that she had just been told about.

I approved that she had asked to see him as so often, professionals decide the fate of cases on paper only and they have never even met the child. I recall when we went to Tribunal in order to get a place at his current school, I printed off my favourite photograph of him and we had a laminated A4 image of Joshua sitting in front of us while we were talking, just as a reminder that this was an individual with a smile, freckles and twinkling blue eyes, not just  an anonymous case in a long day of hearings. I am not sure if it helped anyone else, but I felt as though he was being represented there.So it was a good day at school and it felt like another big step in Joshua’s future, a step away from school towards his adult life, but a step that I felt supported in by professionals who have his, and our, best interests at heart.

Breathing Space

The countdown to Joshua’s 18th birthday is well and truly on and one of the things that was still unresolved until yesterday, was whether or not his current Children’s respite would be able to offer him an extension, while we got organised with his Adult provision. I knew that OFSTED had to authorise Joshua’s presence there, as strictly speaking, he will be an adult staying alongside minors. The request had been made by our social worker earlier this month but I had heard nothing, in fact his key worker had emailed my last week to ask me when his last weekend would be as she wanted to ensure that she said goodbye to him. I explained that I was still waiting to hear but that everyone had suggested that a short extension would be permitted, so long as we had named his adult provision and that we had a date when we planned to begin that service.

I had had no response to my emailed enquiries yesterday, so I called the manager , from a queue on the motorway, to ask her what was going on. Although she had not yet requested the extension from OFSTED, she promised that she would do so. There was an email waiting for me when I got home from work, to tell me that Joshua would be granted three more weekend stays ,by which time he will need to be ready to move facilities. This is great news, such a relief, and it gives us some much needed breathing space. It will give us an important opportunity for a proper goodbye and thank you party, rather than just fizzling out, which he was in danger of doing if his final weekend had been in February. It will still be very emotional to move on, but now  we have a final deadline in mind and a new destination, that will be much easier to do. I hope that we can plan a party for his final weekend in May,  that we can attend too, so that we can say our thank yous and goodbyes. Having this respite provision has given my husband and I  so many opportunities and they have shown Joshua so much love, care and fun, so all three of us have a lot to be grateful to them for. They made the search for an Adult replacement very difficult, as they have set the bar very high, but it meant that they enabled me to know what I was looking for and more importantly, what I did not want for grown up Joshua. I am sure that we have made a good choice, but they have a very tough act to follow.

Let them eat Cake

It is the second parent coffee morning of the year on Friday and so last night, after Joshua was in bed I made some caramel shortbread ready for the event, so that it was not all last minute and I have a coffee cake baking in the oven now as I write. I was delighted to receive a message yesterday that one of the Mums who comes most months, will be making and bringing a lemon drizzle cake along to share. We never know how many parents will attend, but I have a fear of having more people than cake so I tend to over-cater and then give it away within school, work or  even my hairdresser afterwards.

Due to  the risk of allergies and the unknown ingredients of home-baking, the school Governing Body agreed that homemade cakes should not be allowed any more in class,for the pupils. So Joshua will be having a his first shop-bought birthday cake in school for his 18th next week. I understand the reasons why this policy has been introduced and of course, I would not want to hurt anyone through my baking, but it  still upset me and I examined why that was:

I bake to make people happy, it usually brings a smile to faces.  I also use my baking to show people that I care: if someone is low, poorly or having a bad time, I will often turn up with surprise shortbread or chocolate brownies to try to cheer them up or to simply brighten their day. I use baking to thank people who have been kind to Joshua , such as the staff at respite, who usually find a tin of treats tucked into his overnight bag. I bake as bribery too – for orthotics and school nurses, to make sure that they are kind to , or particularly remember, my son.

So being told that I could not bake for children , who might not be able to judge what they should or should not be eating, for the good of their health, took away one of my ‘caring tools’ and so it did not feel good, even though my head knew it was sensible. The reality is probably that Joshua’s peers in sixth form, like cake , and they probably do not actually care if I made it at 5am in my kitchen at home, or if I bought it from the local supermarket, they will enjoy the sweet treat just the same.

But the new ruling does not apply to staff or parents, who it is assumed, have the capacity to ask what is in a recipe and can decide for themselves whether or not they should eat it. So I  was encouraged to continue to bake for the coffee mornings and for Governor meetings, so it is not a blanket ban on home-baking and so I will continue to do so, while Joshua still attends this school. I have already started to make noises amongst the coffee morning attendees, that they need to start recruiting a new baker,so that somebody else can take over my role next year. They have plenty of notice but so far there are no volunteers!

A Quick Reminder

I had a long day working away yesterday , leaving home at 6.15am and catching a train to Scotland and not home until 10.30pm, by which time thanks to Yorkshire Grandma and my husband, Joshua was tucked up in his bed. However I expected to sneak out in the morning, leaving him fast asleep, but we had one of the worst nights that we have had for a long time, so I saw too much of him the night before my trip. He appeared at my bedside at 2am as he needed changing. I hoped to do that quietly, without either of us really properly waking up – I have, over the years,  mastered changing in the dark for this very reason. However, Joshua had other ideas as he marched off downstairs, ready to play! I gave him some Weetabix with hot milk, hoping that would fill and settle him. But Joshua was wide awake and so I agreed to let him watch the Show in his den, under a blanket, hoping that watching the TV screen would make him sleepy.

It was very like old times, we were both up for two hours in the end and I persuaded him back to bed at 4am and we both gained another hour’s sleep, but he was back at my bedside an hour later. So when Yorkshire Grandma crept in at 6am, trying to shush the dogs from barking , I told her that it did not matter, that we were all well and truly up anyway. Joshua was super excited to see her, shouting loudly ‘I like you’ and giving her hugs as he had not seen her all of half term. I knew as I left the house to catch my train,  that he was now definitely not going to be inclined to go back to sleep and I left them to their happy reunion.

This broken sleep, being awake and downstairs at 3am, was very familiar to me as we have spent most of his childhood seeing that time of day. Last night was a great reminder of how far he has come lately: more often than not, Joshua is asleep around 9pm and sleeps through until 7am, which is a perfect sleep pattern for school nights. It made me appreciate how far we have come and my only wish was that he had chosen a different night to re-visit the past. As ever, I was fine in the morning and I could not shut my eyes on the train, as I had planned. But certainly on my route home again, my head felt a little fuzzy and on one occasion, I woke myself up with a loud snore. When I finally got in, relieved to find that Joshua was in bed, I had a quick cup of tea then was in my bed, asleep, within 20 minutes of arrival home.

Birthdays Past

Joshua will be 18 in a week’s time, so I have been reminiscing about Birthdays Past, as he has had some pretty memorable ones : He was in Las Vegas for his first birthday as my best friend from University was getting married on the 1st March and I was a bridesmaid. Baby Joshua was upset by the flight and he did not settle very well in the Vegas hotel I recall. On the run up to the wedding, my husband was jigging him up and down the hotel corridor humming the Archers theme to him for some reason, to try to settle him down. After the wedding, we drove onto Palm Springs and had a wonderful holiday with our newly one year old son.

On his third birthday, he was lucky enough to be in the USA again, this time in Florida with us, his grandparents and my sister in law. We went to a farm on his birthday and held baby ducklings I remember and that night, we went to see an Elvis tribute act in a local hotel, and he danced up and down the aisles in his element.

As Joshua got older and larger, we stopped going abroad for his birthday and we had many family birthday parties as he shared his birthday with my Dad – Joshua arrived on Grandpa’s 64th birthday. Joshua will have stolen the birthday limelight from my dad, but never someone to enjoy being the centre of attention, he will have been happy with that. I can visualise us all in the snug at home, one year when he was more vocal, Joshua holding up the clothes that he had been bought, delighting in his new shirt, calling it ” smarty”! He just loved having the wider family around him and of course, the inevitable chocolate cake. I have photographs of what must have been his 5th birthday, with family all wearing fancy dress : Joshua was wearing his Shrek outfit with a spongy big tummy, my mum was Wee Willie Winkie and Dad was dressed as a professor in a gown and mortar board.

But his 13th birthday was particularly memorable to me: on 4 March 2014, Joshua had brain surgery at Great Ormond Street hospital to try to reduce his seizures. He was in intensive care the day before, but when he turned 13, he woke up on surgical ward. The nurses gave him a chocolate cake, which he sat up in bed to eat, but that it about all he managed on that particular birthday, although we had brought all his birthday cards with him and they surrounded his bed.

So compared to that, every other birthday ought to be an improvement and lets bring on number 18, we are on the countdown now.