Second Home

The best thing happened as Tuesday night turned into Wednesday morning! I was watching a DVD on my computer (Cool Runnings - awesome film that has to be seen during the Winter Olympics. I, like so many, have so much love for the Jamaican Bobsleigh Team)  when I saw something flash up. Free WIFI has come to the Ronald McDonald House I live in when I leave the hospital in the evening. This means several wonderful things. It means I can blog more regularly as I now have some precious online time without fighting Wills for it while he watches endless Thomas the Tank Engine remakes, reviews and collection haul videos on YouTube so do watch this space more regularly from now on. It also means I can stay in touch with people more easily, get some work done and watch iPlayer and the like, all in all, it means I am connected with the world at the time I feel most isolated.

Ronald McDonald House is an incredible place. It's home from home and a much needed escape from the ward. I sleep there, cook meals there and bring Wills over when we have periods off treatments and with no physio or other therapies going on. Here he can play with their vast collection of wooden railway while I make lunch and get some work done (much easier now with the WIFI too). It's as close to being at home as it gets when you are living in hospital in another city. McDonald House is not funded by McDonalds. It's a charity and one that makes a huge difference keeping families like ours together when we need each other the most. The rest of the family can come and stay there too as often as they can and when my girls were younger we all moved up here together. Now they are older, in critical exam years and need to stay in their own schools. I really miss they days we were all up here together.

While we were chilling at Ronald McDonald House on Monday we were called back to the ward. William has been in a cubicle since we got here as they needed to rule out infectious viruses and infections. He is clear of these now and I knew we would be one of the first out of the cubicle if it was needed. We had to come straight over and pack up our six weeks worth of things, take the cards off the walls and move.  I am a bit of a nester and I need to make a little home for us when we are in hospital. We used to live for months in Chelsea and Westminster Hospital which was very close to a Cath Kidston shop. We had an end bay space with a window cill and that was always organised with piles of books and Cath Kidston tins bought in sales. If I could have candles and incense in our hospital and Ronald McDonald rooms I would! I miss the smell of incense so much I'm tempted to buy some just to smell unlit. I've built a literal grotto when we've been in hospital over Christmas. I really need to make our clinical environment as homely as possible.

Christmas 2011

It felt a huge upheaval to pack up. I had created a home for us in that little room. A home where we could shut the door on the ward when we snuggled up to watch a film and it was just us. A home where we could live to William's routines as much as possible without the ward hustle and bustle. William has Asperger Syndrome so routine is paramount to him and he gets very anxious when it is upset. Wills stomped into the ward demanding who had 'thrown him out of his room' and insisting he was not moving. I was really worried he would have a huge meltdown but he settled quite quickly. We have a window cill so I have a little pile of his books there and my room over at the Ronald McDonald house has a pile of my own, together with a few photos. I have some little nest and it's really quite nice being out on the ward with more people to talk to. 

Groundhog Day

Oh dear, my plans to blog daily have failed again!  It's been over a week since my last post. It's not that I don't have ideas. My lists of ideas grow daily. I do find it hard whilst living the hospital life to find the brain space to develop ideas and put them into the kind of sentences I'm happy to share with the world.

I think we've been here six weeks now. I's need to look at my diary to check that for sure. I've reached that stage where the days begin to merge into each other and, at times, you forget what day it is. Thursday's are easy as their arrival is heralded by the weekly fire alarm checks. Weekends are also easy. The consultants come round earlier and always look more relaxed than in the week, usually in jeans ready to go home and chill with their families and hope not to be called back to emergencies. As long as your child is stable, nothing much happens other than that. Weekends are long and often the hardest times as your mind is invariably on home and the people and activities you'd usually share weekends with. Other days tend to be very similar.

Usually, by now, we'd be in a routine. I sleep in the nearby Ronald McDonald House and arrive back on the ward to Wills first thing at about 7.30. We watch some TV, eat breakfast and get ready for the ward round, physios, teachers and other visits. William usually goes to school at 9.15, comes back for lunch at 12 and back to school from 1.15 - 3.15. During those precious hours I can think, write and work. That's the usual pattern long admissions with set backs since William's transplant have taken. This time it's been different. We've had loads of tests, each one bringing a change of plan. Wills has been ill with pneumonia… Two days ago, finally, we've been able to establish a routine of school from 1.15 and two precious hours for me to get back into my workspace again.

Routine is a good thing but 'over routine' can be the thing that really drives me crazy in hospitals. I remember a time before transplant when we were living in hospital and had been told we wouldn't be able to leave until after William's transplant. We had no idea how long that could be and so it really felt like a prison sentence with no release date in many ways. For weeks on end the exact same people would come into the room at the exact same time saying the exact same things. They were lovely people saying lovely things. At 8.15 the cleaning lady came in every day with "Good morning William, you are better today!" in here lovely cheery Indian accent. The play specialist peeked her head around the door in the exact same way at 9.00 saying 'Hi Guys' with the exact same intonation… and so on. Lovely people doing a fantastic job to brighten our day, but for me it really did begin to drive me crazy. It was like Groundhog day, it really was. Every day, day after day, exactly the same. Those things used to start really annoying me and I used to jump in quickly to change things. To quickly jump in and say something to the cleaner or play specialist to prevent them from saying their usual greetings or do things that we did in the mornings in a different order.

For now, I'm welcoming some kind of a routine so I can 'bag' the spaces where I can have a bit of space and do the things I need to do. Now I've found it I WILL pull my socks up from now and get writing. I'll be making sure things don't get over routined though…

You've Got Time

When we say things like, "see you tomorrow at two o'clock" or "I'll be back in five minutes" we always assume that the passing of time will seem the same for each of us. If it's the dentist I'm seeing tomorrow at two I can guarantee that time will pass faster than if it's a good friend I haven't seen in ages. I've just read this interesting piece on the psychology of how we perceive time.  I think here, I could really do with a clock like this. For me, right now, it seems like time is running away and standing still at the same time.  It's hard to comprehend we have now been in hospital for nearly 6 weeks. Where on earth that time has gone I don't know. Yet, while it seems to have passed so fast it has dragged.  

We are waiting for a detailed MRI scan to see what is going on in William's bowel. Because there is still some concern about some kind of a blockage as he has so much green bile in his stomach, it has been decided not to try any feed until we have this scan. The scan was booked several weeks ago and the date we got was 10 days on from the booking. This was supported to take place last Thursday but, on Wednesday, a week ago today, Wills became very sick with pneumonia, probably caused by aspirating the bile that is confusing us all so much with its presence from his stomach into his lungs. Instead of being in the scanner, he was fighting to stay out of intensive care. The scan was re-booked and will now take place this Friday - a whole week and a day later. To the team here, this is a shame but it's a week we are still working on the pneumonia with lots of IV antibiotics, antifungals and lots of physiotherapy. For Wills, it's a week of frustration where his precious play time seems to him to be stolen by all these extra treatments. For me, it feels like a week of time suspended away from home and the things I should be doing. Eight days seems a long time right now to be standing still. I've spent some of this time watching 'Orange is the New Black, 'a US series set in a women's prison so something I can relate to quite well after spending so many long hospitalisations before William's transplant living on the same ward with the same group of mums for month after month. I'll come back to this in a later blog. (Orange is the New Black is on Netflix and I strongly recommend it) I love the theme song to the show, 'You've Got Time' by the amazing Regina Spektor. 

One line makes me stop and think every time I hear it;

"Taking steps is easy, standing still is hard." 

It's so true for me. I like to keep moving, keep busy so I don't have to think too much. There is a lot of time when you're in hospital with a child. When I look back over the last six weeks it feels like a lot of that has been wasted. It's not always easy to make the most of every minute when things are stressful but I really need to be able to look back on this time when we are home again and life is back to a relative normality and see that I did something productive with it. That there was something concrete that I achieved. For me, I hope it will be substantial progress with my writing such as a large chunk of my novel drafted or a radio play drafted. Another long term mum here was talking about getting stuck into sewing projects. At times I've knitted scarves. I did try a jumper once but it's hard keeping track of where you are in the pattern when people come in to do something and you need to drop it suddenly. 

Time is precious. You never get it back and you have to make the most of every moment of it, wherever life has thrown you to spend it. 

Derailed!

Life for me often feels like a complicated dance between two parallel worlds, the real one where my family, friends, work and most of the other things I hold dear in life are carrying on in relative normality, and the world of parenting a sick child. Most of the time, in recent years certainly, these worlds have been bumping along together pretty well in tandem. Since the start of this year, keeping everything cruising along has been a lot more challenging as Wills and I have been back in hospital, now in a city away from the one where day to day life happens.

This blog is all about my attempts to keep spinning all the plates I need to have up there on sticks in order to keep the family, and myself not only functioning but moving along in life. It's part of a wider plan to keep writing, keep the novel growing, keep finding and pitching stories to my magazine editors, keep my newspaper columns going… keep my brain and creativity going! I was doing pretty well too. I guess this current journey in our lives can be viewed as a bit of a detour off the mainline and onto a windy and bumpy branch line then. Well,  the last few days, have felt more like this…

Wills has been really very sick. It all came from nowhere. Without any warning I watched him crash down and down and the little nest of calm and routine I try and carve out for us when we were in hospital was invaded by emergency and chaos. My little man is one of the biggest fighters ever and is a long way back to how he was exactly a week ago, when all this started and when I was last able to find the space and in my day and in my mind to think deeply enough to string some written sentences together. The drugs, physio and ever awesome team of specialists at Birmingham Children's Hospital have done their job and rescued him from the crisis. The crisis wasn't all bad, it taught us all a lot about what is going on his body, the reasons why we have been in hospital since the start of the year and, I hope, some ideas about the solutions that will get him well and home again. I can see the positives but I am still left feeling derailed from the track I was on. In an emergency, you just do what needs to be done. You walk beside your child to scans and x-rays, help staff with oxygen masks and accessing his Hickman Line for drugs, help encourage him to engage with painful and difficult physio, despite him feeling completely wrecked. When he is awake, you try and distract him but when he's sleeping all you can do is watch. There seems to be nothing left in your mind or spirit to be able to think about anything else. It's shock really and, when the crisis is over, that shock takes a little time to dissipate. I've written this though so I must be on my way. Now to find that 'to do list' I wrote this time last week. Where was I…?