2 Cor 12v9

Friday, 7 November 2014

My Ground Zero


I feel a bit overdramatic describing my life right now as Ground Zero. If it describes the nearest part of earth shattered by a blast though, then the blast would be my family’s illness and death, and I would be the nearest and most affected part left. Of course my life is not in ruins - I have so much of my life left that I feel like I still have more life than most people on the earth, even with the huge missing parts. But I have started referring in my head to my grieving and sorting days as Ground Zero days, and the more I thought about the analogy, the more it seemed to fit.

So this is what my life looks like right now: for the first time in twelve and a half years, I have no preschoolers at home. Twelve and a half years is a really long time back to back. It’s an eighth of a century. It’s 75% of my adult life so far. (Can you tell I’ve done a lot of thinking about this?) Here’s a brief outline of those twelve and a half years: 

2002: Turtle was born, we were both in employment as as a mechanic (R) and at a travel agency (me) while doing lots of youth and childrens work.
2003: Had Scooby and Ace, worked as youth workers and then church planters in Preston.
2004: Moved to bible college to study full-time.
2005/6: Studied, raised babies, more youth work, missions, preaching appointments, etc.
2007: Finished college, hastily threw all our belongings into boxes and moved to Preston for a few weeks that turned out to be months, into a house that was more wrecked than we thought, and did up each room inch by inch. Richard becomes a full time diary engineer; Rocky is born three weeks after we move into said wreck with two usable rooms. Meanwhile we start meeting as a church.
2008: Richard works full time, fixes house, leads church. I look after four boys, help with church and by the end of the year have more than half the rooms finished.
2009: Almost hit normality, where Richard gets to work a day a week for church and youngest is nearly at preschool. Then I get pregnant and am ill and can’t walk for the last half of the year.
2010: Scooby gets ill and we spend many months in hospital with him. Baby is born and I can walk again. So two kids in school, one at preschool, one at home and one in and out of hospital.
2011: I have to step back from helping at church as the hospital trips intensify and we decide to home school instead of spreading the kids out. Richard manages to get two days a week to work for church, but ends up spending most of them in hospital.
2012: The first half of the year is lived from RMCH as we swap over twice a week to look after Scooby. We spend a month before, and several months after he dies, in Preston, trying to work out what we do next. Not wanting to make huge decisions based on grief, we move back to Morecambe and continue leading church. The kids go back to school. We see growth and make incredible friends, confirming we’ve done the right thing.
2013: Richard struggles with his back and by March we know something is seriously wrong. We keep going with church, and renovating the new building for it. After many months of tests and treatments Richard is diagnosed with cancer and spends the rest of the year in treatment.
2014: More treatments and appointments and in March Richard is unable to walk and spends the next two months in hospital and then the hospice until he dies. 

I hope that doesn’t all sound depressing, because it wasn’t - there was so much fun and passion and excitement in amongst all that. I’ve written it out to remind myself why everything has felt like a whirlwind for all that time. Some of it we chose to do, other things happened to us. We didn’t ever do one thing at a time - each season and challenge ran into the next one, and nothing ever felt finished or completed before the next thing started. Richard was the driving force behind pretty much all of it and I just ran with whatever I had to. I’m not great at being proactive but I am great at being reactive in a positive way. So whatever has shouted the loudest for the last twelve and a half years, be it a baby or a hole in the roof or a 999 call or a gap in the rota for church - that’s made my decisions for me. I don’t mind, I don’t expect perfection, I just want to do what’s needed when it’s needed to the best of my ability in that time.

What it means is that anything non-urgent has constantly been pushed to one side. There’s always been at least one room in our house that has defaulted to purely housing ‘stuff that needs to be sorted’. Things that were mid-completion and needed to be kept away from small fingers, or stuff we were storing for church before we had a permanent building, or stuff that was just in the way in any other room so it ended up in that room. Right now, thankfully, it’s been shoehorned into the smallest room in the house (two years ago it was all in the biggest), but this is the sort of stuff I’m picking through:

There are boxes still unpacked from college, because by the time we finished decorating every room we’d had to move them to the attic so we had the space and they didn’t have anything urgent inside them. There’s boxes and folders of stuff we did when we were homeschooling and I put it all to one side not knowing if we would go back to it or not. There’s boxes of wires because we’ve changed what we’ve used technologically so many times but kept things for church or the kids or to fix later, that it’s all jumbled up and useless now because I don’t know what they belong to. There’s clothes that the kids have grown out of that just need separating into stained-or-ripped or decent-enough-to-pass-on but because it was never a urgent job it never got done and so the pile is huge. There’s bags or boxes from times when I’ve emptied out the car to clean it, or even a room that we were moving things around in, and after I’ve grabbed the bits we still need, left the stuff in the bag or box to go through later. There’s games that got their pieces scattered and so we put them to one side until the pieces were gathered again and now I don’t know if there’s a bag somewhere waiting with the missing pieces in to be reunited or if the pieces are long gone and so I just need to throw the game. Craft supplies that needed to be kept out of reach and got forgotten and now half of them are probably dried up. Papers that weren’t urgent enough to need attention straight away and so they got put in a pile. White memory boxes where I lob stuff I know I want to keep but that need properly categorising so everyone gets one with their name on and cards of condolence  aren’t lying next to baby shoes anymore. 

With or without loss, this would need doing at this point in my life. I am privileged to now have the time to do it. Heck, anyone who has this problem is privileged! “I have so much stuff I don’t need that unless I sort it out properly I’m just going to be filling more landfill space with stuff I shouldn’t have spent money on in the first place because I’ve clearly managed this long without it.” So I’m determined to redeem as much of it as possible by getting rid of it in a still useable state.

The other reason of course has become emotional, not just practical. Every single thing in my house - like your house - has a story behind it. When and where it was bought, why it was given, what it was used for, what changed so it no longer was needed, etc. All of it. Through the summer I spent time away from all this stuff. My only objective was to keep going - to keep feeling alive, to do stuff I didn’t think I’d be able to do, and to stop grief from crushing me. It worked, and so now I’m removing the cushions and letting the crushing begin, because it’s got to come anyway, and I’d rather decide the how and when, with a whole summer of survival behind me to remind me that this is not going to destroy me.

That’s why these are my Ground Zero days. This is the time where I look over the rubble of the past years and start to sift through. Because when devastation hits, the problem isn’t that you’re left with nothing; it’s that you’re left with a whole bunch of something that you no longer know what to do with. You don’t just take a match to what’s left and hope it disperses in the wind - you have to go through it piece by piece and see what’s left. 

So much of it is just rubble because it’s been warped by the tragedy and has no use anymore. In my case, that’s medication, work clothes, pieces of gadgets that I don’t know what they belong to, subscriptions, emails, accounts - stuff you can’t leave there or keep because it’s in the way and stops you moving forward. 

Then there’s stuff that you know you’re not going to be using anymore but that is still useful to someone, and if not in it’s present form, then at least it can be repurposed for something else. That’s clothes, shoes, books, gadgets that still work, tools, fish-keeping equipment, church strategy ideas, etc. In my case, this is from a man who, when he decided to try something new for the first time, would go out and buy all the equipment for it, had a short attention span, and a bad memory for remembering how much time and money hobbies normally take, so would underestimate both and launch into something huge, be unable to finish it, but keep all the equipment just in case. These hobbies including keeping marine fish, woodwork, diving, playing guitar, air fix models, cycling, cooking, any DIY related skills, running, travelling, cheese making - the list was endless. So you imagine the amount of equipment left behind after all of that.

Then there’s the treasure, and the reason why the whole site doesn’t just get bulldozed in the first place. Stuff that was once every day, but now the tragedy has turned it into more valuable than gold. In real blast sites, there are actual remains of loved ones. In figurative ones like mine, there are things that piece together what’s left of a person in a way that nothing else can. Writing pads with disjointed thoughts on, pictures, cards, things that were bought impulsively and never used but illustrate a character trait so perfectly that the story needs to be repeated, clothes that were worn on special days or bought for a special reason, mementos of holidays, text messages that illustrate every day banter, training manuals that show how much time was invested into future hopes - all that stuff needs to be preserved and put somewhere so it can be accessed whenever people need to revisit the life that had such an impact on their own. 

So as I sort, and pick through, the external is mirroring the internal. I have no idea what to let go of and what to hold on to. I sort, I stop, I cry, I write down a memory before it’s forgotten, I allow myself to follow through thought processes that I normally have to push aside when I’m concentrating on conversation or the children’s needs. I ignore my phone and I push myself to keep going, crying and laughing with every memory I come across, letting it hit me as hard as it needs to. It’s exhausting but it stops me from becoming complacent. Although it feels like wallowing in the past, I know what it’s actually doing is moving me forward, like opening up old wounds to sort out what’s underneath. 

I can’t do this every day. I wish I could just pause life for a few week, get it all done, then close the door on it. But I have responsibilities, and also I don’t want to sink too far down. I can’t seem to sustain deep levels of negative emotion for long periods, whether it’s anger or sorrow. I need to break free in-between and have laughter and purpose too, so I’m spacing my ground zero days where I focus on the past and on the pain of death, with days where I take the kids out and I serve at church and live life alongside other people and keep focusing on my purpose for being here. Because when tragedy hits like this, one shortly after another, how else do you stop yourself from only thinking about the world beyond this one? It’s easy to start wondering what the point is when life seems so short, and so many ideas and projects seem to have died along with the people I lost. But to keep talking and dreaming and hoping - that’s the biggest weapon against despondency and allowing death to have the last word.

Some people have been uncomfortable when I say I can’t hang out for coffee because I’m busy, because they fear I may be taking too much on. But at Ground Zero you can’t just leave everything as it is and make your bed among the rubble. And if I don’t plan and structure, I just spiral instead. That’s when I go from job to job in the house, and from room to room, because as soon as I move one thing, I see another thing that needs to happen, so I physically move round and round and as I do, I feel myself sinking down and down. But if I choose my mission for that day, and I ignore the things that masquerade as “urgent” - phone calls and thoughts of other things I could be doing - then I know at the end of every one of those sessions, be it an hour or a day, I have moved forward a tiny bit, and faced a memory or shed more tears or put words to a heartbreak, all of which are necessary. 

So I am treating this stage as a project, and even though I’ll have nothing physical to show for it at the end (except for space and some neatly packaged memory boxes), I’m hoping there will be a beauty and a weightlessness at the end of it. And I hope to have remembered, after twelve and a half years, what it's like to be allowed to commit to the important instead of just the urgent.

Wednesday, 29 October 2014

Grief is Like the Weather

For two reasons.

One is that if you were to ask someone mid-morning “What’s the weather like where you are?” the answer could be "Terrible”, but at lunch time it could be “Fine,” and by the afternoon it could be “Great”. So if you asked someone later on that night how the weather had been that day, what would they reply? It would probably depend on whether they’d had a conversation about it with someone else, as that would stick in their minds and remind them of that part of the day. Or of significant moments of the day and how the weather affected them, say, at the moment they left the house to pick up their children.

And thats how it is with grief. There can be a point in the morning where I feel frozen in time and despondent, like nothing in my life will ever feel right and that there’s just no point in doing anything, ever. But at lunchtime everything can feel fine and normal and I’m busy doing a task like not much has changed. And in the afternoon I might hear some great news or do something really fun with the kids and life can seem great. Then by the evening I might feel totally overwhelmed all over again and feel anxious and afraid and like life is totally out of my depth. 

So the answer to “How are you doing?” is a completely transient one. It changes not just every day, but every few hours, just like the weather. Eventually over the course of a week I might be able to look back and say “Not too bad”, because overall I remember more times of okayness and fun events, and other weeks I’ll look back and say “Terrible”, because although there were many ordinary moments and lots of good things in there, there were also emotional storms that stick in my mind more than the periods of calm.

But there isn’t really any way to sum up what it’s actually like. It’s unsettling, it’s crazy, it makes you feel like you’re out of control, because you can’t predict what’s coming next and so you daren’t rely on how things are today in order to make decisions about tomorrow because you just don’t know.

But neither do you want to stop living life just because it may rain tomorrow. Although there are lots of things I no longer feel confident doing (things that don’t seem like a big deal to most people but I am actively avoiding them because I know they’re a big deal for me), and there are other things that I make non-negotiables in my life - church stuff, for example. Things I don’t leave to chance, so I can’t wake up in the morning and look out of the window or into my soul and make a decision based on that. I make pre-decisions, to just do the things, and inevitably I am built up and moved forward an inch just by doing them. The big question is, of course, are what those things should be, and how many of them to commit to, and which ones really will build me up even if I don’t feel like doing them, and which ones become an unbearable pressure that make everything else worse. That, with the help of the amazing people around me, is what I am still figuring out right now.


The other reason grief is like the weather is this: you don’t expect it to snow in summer and you don’t expect a heatwave in winter. You have to accept the season you’re in. 

I have to admit that part of the problem facing me throughout Richard’s illness and death was the frustration of “I’ve just BEEN through all of this!” It sounds stupid to say it, but along with all the other thousands of reasons not to want to lose him, was that toddler in me that said “Hey, this isn’t fair! Enough with the grief stuff, I was ready for that to be over and throw off that cloud and now I have to start all over again!” One of the incredible things about the summer (and part of God’s grace to me) was being able to go away for days at a time to somewhere else and it not matter as much that he wasn’t there. It was hard doing things that he was missing out on, and making memories that he couldn’t be part of, but it also gave me permission to have days where I could be in a different world for a while, a world removed from normal responsibilities, with extra people around to help with the kids, and know that I had everything I needed for that week without worrying about the future or the past. They were moments in time where grief wasn’t everything. And I could have happily stayed there.

But then there is real life - school, meals, paperwork, banking, clothing everyone, maintaining healthy relationships, fulfilling responsibilities - all that stuff needs doing and of course, the roller coaster of grief alongside it. And I wish I could avoid all of it (this is the weary despondency that I’m in at the moment) and for it just to be summer again, where life is not contained in these little boxes we call houses, and routine isn’t dictated by school bells, and it is bright nearly all the time. 

But it is not summer. If I’m looking for life to be bright and cheery and warm at the moment, I’m looking for the wrong thing, and this will only lead to more frustration and depression and warring with my circumstances. Right now I’m in the worst winter, so I need to not keep looking outside and wishing I could stride out in shorts and t-shirt and have a barbecue. I need to focus instead on hunkering down and working out what needs to happen in order to keep healthy inside the four walls I currently need to stay in. I need to focus on what needs to happen right now in order to keep time moving and make the best of this season so that when summer rolls round again, as it always does, that I’ve made the best of this dark and oppressive time I’m in and am free to really enjoy moving forward again. I don’t get to be in charge of when that happens, but I do get to be in charge of how I deal with it.

And every season has its benefits. The joy of a log fire is totally lost in the summer - its just more oppressive heat. But in the winter it brings a different kind of joy, even if only because it contrasts the cold so much. So picking over memories right now and finding photos and events that I’d forgotten existed have brought so much joy, even though I’d rather have the reality than the memory. Having the freedom to take whole days out where I can just grieve and think and remember and cry is a privilege that other members of the family don’t have at the moment, and it does mean that when I catch up with people to chat about Richard, I’m often the one not crying, because I already spent the whole day before in tears and so I’ve already let it out. I’m grateful that I’m not supposed to be out there right now taking on the whole world - winter means staying in much more and just dealing with what’s in front of you, without the pressure of covering lots of ground outside. 

Seasons change your expectations. When the day is seven degrees and mild in winter, you feel overjoyed. The same conditions in summer would make you feel cheated and disappointed that you weren’t experiencing what you think you ought to be experiencing. And when there are days of ‘nothing’ weather in winter, when it’s just the cold and the wind and nothing else, we get frustrated, don’t we? So then when it snows, we get excited, and we go out and we get deep down into it because we finally have something to show for it and something to build with. Tears of grief can be like that too. Normally we don’t want to cry, but when you go for a long time in grief without crying, it can feel wrong and pointless and unnatural. So when the tears do come, its like a celebration and a release. Emotions are the evidence of the loss and how important that person was to us, and so when we’re in the winter of grief, we’re allowed to be glad that it’s pouring out of us and we’re not trapped in it. 

So the line I’m walking right now is to try and embrace the season I’m in. I can’t hide from the grief or pretend it’s not there, except for the little pockets of escapism I give myself in books and movies, I just have to roll with it. But I also need to know that this season is not forever. So I’m not going to make huge decisions at the moment, like throwing out everything I own or giving up on my job or cutting off relationships, even though that crosses my mind sometimes, because eventually things will change. And I’m going to make sure I’m ready for the new season when it comes, and that I’ve fully dealt with this one and am hopefully not still stumbling over the same feelings and regrets and fears in two years time and ten years time as I am now.

Tuesday, 15 July 2014

Six Weeks

The first six weeks has passed. I don't know why the idea of six weeks is such a significant period in my head but I knew that with both deaths in the family that the first six weeks would be the most terrible and the most significant when it came to getting on with the rest of my life. I haven't tried to do anything at all in this six weeks that I feel I ought to have done - just the things I wanted to. I've made sure I have made use of as many offers of help as possible, and fallen apart as many times as I've needed to, and pushed aside any thoughts of responsibilities or decisions about the future. I have drifted along in a daze and let other people organise things around me. I have faced the toughest things, like photos and cupboards and paperwork because I wanted to, and knew that I didn't want to prolong any of the raw and most painful grief that comes in the beginning.

I have developed quite a few coping strategies that are probably different to how other people would cope. I can't seem to sustain high levels of emotion for long periods of time and so although there have been many many tears and those horrible fake punches in the stomach that wind you emotionally when you least expect them, there have also been lots of calm words and stories and chatting about things that don't seem very emotional. I find that as soon as I put into words whatever has hit me that day, and preferably in that moment, it seems to lose its painfulness as I talk about it. So when I've heard a certain song, or seen something that Richard would've liked, I just tell whoever I am with, in a steady voice (and often with laughter as I think of his reactions) about what I'm thinking, and it seems to unfurl that knot in my stomach until it's gone. I can see myself on the outside, talking calmly about something that is really painful and would've crushed me a few weeks ago, and I think "Huh, this is weird. Shouldn't I be crying or something right now?" But even though I don't understand it, I just have to do what feels right in the moment, and I realise it must've worked, because next time I think of the same thing, it isn't half as painful.

One of the other unnerving things is not being able to predict how I'll be in certain social situations. Some things I have totally avoided, and other things I've surprised myself by not just going to them, but really enjoying being there too. I can't work out why some places and people make me feel really vulnerable, and others make me feel totally at home, but again, I've just gone with my instinct. Meeting new people, who don't know my situation, has become a huge gigantic obstacle to me. If people follow the normal polite social rules of showing an interest in the new person they are meeting, then I am generally screwed.

"How many children do you have?"
Well, it depends. Are we going to be talking about how old they are right now, and what schools they're at, and what we did this week? In that case I have four. But if we're going to start talking about birth stories and past holidays and what they all did when they were toddlers, then it's five. But whichever answer I give, I feel like a fraud, and then have to keep the conversation firmly stuck to the past or the present, whichever one we started at, because otherwise there's going to be that terrible moment when I have to explain the numerical difference and I see your face fall and feel like I've just thrown a huge piece of unexpected information in your way and expected you to say something sensitive and appropriate about it while opening up a huge can of worms in your head. 

"What do you do?"
"At the moment I'm drifting around every day, doing logic puzzles and rearranging cupboards trying to work out what I need in my new life and forgetting to reply to messages I've been sent and hoping I remember to pick the children up on time. But before that I've been caring for my preschool age children and living in hospitals and preaching at conferences and cleaning toilets and caring for my son and then my husband when they both lost the use of their legs and helping to lead a church and making dinners and planning funerals and filling in letters for school and folding laundry." Drama queen much?

"Are you married? What does your husband do?"
..............
I haven't worked out yet what I will say to that one, but I'm sure it will feel like kicking a puppy every time.


And because I don't want to be that awkward person who has so many topics of conversation that brush up on painful memories or stories that make the room fall into silence, it just makes me want to be around people I already know. People who don't mind if I want to laugh or cry or go off by myself for ten minutes to get my head together. Thankfully, I have a lot of those people around me and they are willing to go with me into most situations. They have been like my comrades, helping me navigate every situation I've been in so far, and making me feel like I've always got someone to share my thoughts with, just like in marriage. I thought after Richard died I would need to start a journal so I could still fill him in on what's happening every day, but I've had so many people I can share my thoughts with, I haven't needed to yet. 

I made a decision as soon as Richard died to wear black (or very dark colours) every day, and not to wear makeup. I don't know how long this will last for, whether it will just be this six weeks or a bit longer too. This is not because I am traditional in any way (I am so glad we have a choice in today's society about how we mourn, instead of all being expected to follow generic rules) but for a few personal reasons. One is that I made sure every time I saw Richard when he was in the hospital that I looked nice for him, and didn't sit in a broken heap for the time we had left together. I knew there would be plenty of time for that afterwards, and there has been. Another reason is that I remind myself every day as as I get dressed that there are no expectations on me at all. I am still in my season where I must not worry about the future or load myself up with pressure about what ought to be doing. There is plenty of time for that in the future. And I have found that without makeup, not only am I free to cry whenever I feel like it, but I am also free to laugh as much as I want to. I am not putting a face on the world to make anyone feel better and pretend that I am coping. I am free to be a mess, and I am free to feel joy whenever I want to too. I wonder if laughter is as important as crying for releasing intense emotion and unknotting the stomach. I seem to enjoy it more than ever right now, and am so glad I have people around me that share my sense of humour and don't expect me to stay serious.


I think the most significant thing about this six weeks has been slowly letting go of all the dreams and ideas we ever had for our future. I don't mean I've done that now - there were so many of them that I don't think I'll ever get to the end of the list! - but it's been about accepting that we are no longer going to do them together. I'm pretty sure a lot of them are still going to happen, through me, the kids, other family members and the church. Several time the image of Moses has been used as people talked about somebody who saw amazing things in the future but died before he actually got there. His job was to pave the way for many others, and I think that is what is going to happen. Church is continuing to speak about and live the values that Richard helped to craft. I am reminding the kids of ideas and practices that Richard wanted for our family. We are going back to Nefyn A Camp this summer, to do the kind of youth work Richard and I always did, even when we had multiple babies and it seemed like a really bad idea - we just did it anyway. 

A few weeks ago I got to hear one of the church leaders who has had a huge influence on mine and Richard's ministry. He and his wife inspired us hugely a couple of years ago and helped us turn around our negative perspective of church. When he stood up to speak this time, he called up his wife and spoke about how they'd been married for thirty years and of all the years of ministry they've had during that time. POW - another sucker punch, right in the stomach. Right there and then I had to let go of wanting that moment for me. Even though a few weeks earlier I'd still hoped that one day that would be my story too - decades of marriage and ministry together, leading a church that was now changing lives all over the world - as soon as he said it, I knew I had to face that that was no longer going to ever be my story. That outcome was done.

Throughout the service I wrestled with it inwardly and silently, unravelling it and trying to work out how on earth I let go of something so important to me. But by the end of the service, I just heard this over and over again in my head: "I know." Over and over again: "I know." Because He does. Even though I had a future mapped out for me with my husband, that doesn't mean it was the only possible future mapped out for me. Clearly, that future is now never going to happen. I can't go back and change that. But God knows, and more than that, He has ALWAYS known. So this is no surprise to Him either. So He must already have a future planned for me. And if He has, it must be good, because He is good. That's all I could say by the end of the service: "He knows, and He is good". Those two things haven't changed and never will.

A friend made me something for the memorial service, and when I opened it later, I just sat and stared at it for ages and ages. It just so perfectly summed up the reality of my situation (I am still finding it so hard to write "I" and "my", by the way, when I much prefer to write "we" and "our" and I wonder if I'll ever get used to that too). It has the lyrics of a song that seems to be having a big impact all over the place at the moment. 




Here's what I love about this artwork: there are no edges. Not even one. There is absolutely no limit on where this is going to go. It's not hemmed in on any side or corner that determines where the boundaries of this thing are going to lie. It's totally open to being any shape or size. There are no borders. Not a one. Just limitless possibilities, known only by the creator of this jigsaw, who holds the rest of the pieces in his hand. This I know for certain: I am not going to be able to stand up with my husband in sixteen years time and talk about our thirty years of marriage and ministry. But that's all I know. Everything else is still open, and for one half of a couple who is still left to carry out the adventures on this side of eternity, that is really important.

Whenever I start to think of the future, as I am now starting to do, as the six weeks have passed and I am letting myself peek back out from under the duvet, this is the picture I keep reminding myself of. Those blank possibilities and unknown days can be totally terrifying and when they are, I shrink back for a bit and catch my breath again. But they can also be as liberating as unwritten pages for a book that you know can only ever have a happy ending, and when I am able to see them like that, it makes me want to keep tentatively edging forward to see what's next. 


(If you haven't heard the song, here's my cousin and her husband doing a beautiful cover of it right here: http://youtu.be/81iluE5heNo )

Saturday, 14 June 2014

Happy Father's Day

As soon as the Father’s Day paraphernalia appeared in the shops a few weeks ago I couldn’t help but wonder how it was going to affect our family this year - where we would be up to, and whether we would get to celebrate Father’s Day with Richard in the hospice or at home or not at all. Of course, it has turned out to be the latter, and so straight away I knew we had to be prepared for this day just three weeks later.

And, as always, God has dropped thoughts and reminders in my mind that would turn out to be significant and give us the hand holds we need to get through it.

One of the hallmarks of the last couple of months has been bear hugs and offers of practical help around the house. I don’t think I’ve ever stopped and taken stock before of how many incredible men there are in my life. Before that gives out the wrong impression of me ;) it has reminded me over and over again of what an amazing man my husband was.

So many of my female friends have given tribute to him that he was a great guy to be around. He was fiercely protective of all the women in his life, from relatives to teenagers in the youth group. I remember years ago at a camp he saw a guy from another youth group pick up one of our girls and throw her in the pool. Richard was over there so fast, and without touching the guy or saying a word, he left that guy in no doubt that he was no longer welcome on our patch of turf, and he scarpered in a trail of dust.

Because we were the first in our age group to get married, as each of my friends brought new boyfriends from uni or other youth groups over to meet us, it became almost an unspoken expectation that these guys had to pass the Richard test. If they had a great sense of humour, and treated their woman with respect, and had a good attitude to work and responsibility, those guys seemed to stick around and would eventually become the husbands to our friends. As for the guys who were clearly only into themselves, or were overly flirtatious with other women, or had no drive when it came to building a future - well, somehow those guys always seemed to disappear. (I mean, I’m pretty sure they’re still accounted for, even if several of them have moved far away to other countries by now, but I’d rather not ask too many questions.)

The same was true of Richard’s friends - he was always much quicker to make friends than I am, and so most of our close friends consist of really really good guys who are leading their families well. When Richard discovered great books on manhood or preachers who gave a great perspective on building accountability to keep your marriage pure, he shared them with every guy he knew, and we saw some dramatic changes in some guys as a result of this.

So right now, even though he is gone, I am left with Richard’s legacy of good guys. From friends to brothers-in-law to guys at church, me and my kids are surrounded by great guys, who are fiercely protective and respectful of me, just like Richard was. For every potential problem in my house or car or financial situation, there is someone I can think of who I can ask to help us out. For every hobby or infatuation (good or bad) my kids are likely to be into in the future, I can think of people they can talk to about it, who will be able to guide them through. 

It reinforces the thought that keeps going over and over in my mind - that God knew how long Richard was going to be in my life for, and that I would need him every day during that time, and that when that time was over, He would find another way of providing for those needs. Every single one of them. I hate the thought that I don’t need Richard any more. Right now I’m at the stage where I feel like my inside are being scooped out every day because I miss him so much and I feel like I desperately need him - even to text him to let him know how great these guys he inadvertently placed around me are doing at looking after us - but I know that no matter how I feel, this is the truth. Everything I need is now going to come from other sources, and God has it all covered. 

So me and the kids sat down tonight and instead of writing out one Father’s Day card, we wrote out eighteen of them. For granddads and uncles and friends who are doing life with us right now, to thank them and let them know we see how important they are going to be to our family’s future. How many people get to do that? We are blessed indeed, and will have a very happy Father’s Day.

Monday, 9 June 2014

Thankyou



I think the general expectations of funerals are that they are sad and difficult obstacles that are necessary to hurdle over in the first few weeks of grief, but I love that real church life is counter-cultural to the rest of the world. Today has been a day of huge highs, as we got to gather and exchange our stories and gratitude for a man who has had a big impact on our lives. 

This morning Richard's body was laid to rest - and oh, what a mercy that phrase is after seeing up close what it went through. No more pain or distortion or brokenness for him anymore. Although the processional side of funerals is so foreign to me, the dignity and respect shown to him in this last act was a real blessing, as loss of dignity was such a factor for him in the last three months of his life. The funeral directors went above and beyond as my mention of his love of Duck Dynasty resulted in a coffin branded with the logo and the official DD duck camo that he loved. A florist friend had also taken my off-the-wall suggestion of a beard of flowers and actually made it happen, and it was a beard to be proud of (for a man who, when he lost his actual beard to chemo, kept it under a glass jar for weeks afterwards and threatened to market it as a relic which could be sold off strand by strand).

Then we got to the best part - gathering together at the church we met in, and celebrating his life by singing our hearts out in worship to God. The band was made up of family and friends who were close to Richard, and led by a man who has pastored us for years (which makes me so aware that many people have their funerals led by strangers, and how privileged we are). Richard's sister gave an amazingly funny, sincere and inspiring tribute to her brother, and the guys from our church got to stand up and talk about the vision God had given Richard for the church. Our family were prayed for by everybody there, and my kids got to experience over five hundred people showing their love and support to our family. 

I am so glad for all those who came over to say hello and give me a hug and words of encouragement and condolence. Looking over the cards and messages tonight I've realised there were far more people there than I got to make eye contact with, and so many made really long journeys in one day just to be there. I'm so sorry if I didn't get to see you.

I was surrounded by a group that have started to refer to themselves as my armour bearers, and they stayed by my side the whole time, bringing me tea and food and tracking down the kids and looking after things people handed to me. They even came up with a little technique every now and then of falling into a line around me when I needed to take a breather from talking, or to eat a sandwich. It meant I didn't have to do any of this alone and I didn't feel at any moment like I was under pressure to talk to people - I did it because I really wanted to see as many people as possible and they gave me what I needed to be able to do that.

(This group was formed several months ago when Richard was first officially diagnosed with myeloma - God had brought to mind twelve women who have had a huge impact on my life in the last few years and have carried me and strengthened me through my darkest days. I'm rubbish at asking for help, but the whole time we were waiting for that diagnosis, I knew I couldn't face another monumental challenge like this without some kind of supernatural extreme friendships, and so I invited them all to be part of an email group that took turns to send me encouragement every day, and who I could be really open about my feelings with, and they all said yes :) Even though they didn't all know each other, they have formed amazing bonds over that time and today was the first time all of us have been together in the same place. That in itself was a huge blessing for me.)

Tonight I read through the many cards that were sent to us, and through the memory books that people filled with their stories and tributes of Richard. These are incredible and will be so significant for our children as they read them growing up and get to see their dad through the eyes of many different people. If you weren't there today, or have remembered other things you would like to contribute to the memory books, please send me a message and I would love it to add it to the collection.

I really do want to say thank you for today, and for beyond that too - I know it's not practical for everyone to make the journey, but you've still reached and connected with your words online or through the post, and it really has had a huge impact one me. Thankyou thankyou thankyou.


Finally, inside the order of service sheets was part of Richard's story and I wanted to share it here too so that everyone could read it. I hope it is helpful for all those struggling with what has happened to our family:

There is so much that seems unfair about Richard dying at the age of just 39. It looked like he was in the middle of the most productive years of his life - his family are young, many of his projects and ideas are taking shape, and the church he planted is growing in depth and impact as a result of his leadership and vision. Despite the medical and physical deterioration we could all see, none of us actually expected that he would leave us so soon.

But in truth, if there was a time in his life that was more fitting for him to die, it would actually have been about the age of 22. Because it would have satisfied our notion of fairness much more. At 22, Richard was a man who had been given everything he needed to build a good life, to help other people and to make a positive difference in the world. That’s not what he was doing though. For years he'd been using his time and resources to take advantage of people around him, to live for himself and to betray people’s trust. His story was the epitome of the prodigal son - he took all he had and squandered it and was on the way to destroying his own life and the lives of everyone around him. 

Thankfully, we don’t always get what we deserve. Just a year later, when all his friends, money and chances had run out, Richard finally turned his life over to God. He came to the end of himself and he reached out for God’s mercy and found it, and so much besides. If ever there was someone who knew he was not “good enough”, it was Richard. Not just because of those years he’d spent off the rails, but because of his constant struggles afterwards where he tried and failed to perfect himself. When it came to serving others, he was always trying to make up for lost time, and projects and successes could never come fast enough for him. He lived life at 100mph and encouraged everyone around him to do the same. He packed more into those fifteen and a half years of truly living than most people would, and we are left with an incredible legacy to build on.

But Richard’s story is not just one of bad boy turned good. No matter how much he did, he didn’t earn his way back to God and ultimately into heaven where he is now. All he did was understand the grace of God. He struggled every day of his life with wanting to be in control and other selfish desires, like we all do. His story is no different from the rest of ours - not one of us can be good enough to earn the perfect existence we really want. We all need a Saviour who can do that for us. Richard chose to let go of the control of his life, and found a much better life on this earth was waiting for him - a life of purpose and excitement, where his desires and gifts were fulfilled and he found true friendship and family. Not only that, but beyond this life he now is part of a better one where there is no more struggling or striving or illness, and everything finally makes perfect sense. 

He wanted as many people as possible to hear about God and His life-changing power and so that is what today is about - celebrating the life that Richard was given, physically and spiritually. So through our tears and the pain of the gap he leaves, we can choose joy because of God’s incredible grace, forgiveness and plan for Richard’s life, and for ours too.

Sunday, 1 June 2014

Never Lose the Wonder

It still all feels completely surreal and I know I haven't hit the deepest part of grief yet. That seems to happen a few weeks after the event, when the permanence of the reality of loss gradually works its way under the skin and through many layers and finally hits your core. That's when you change from the inside and you are never the same again and from then on you have to build a new reality for yourself - a new identity without the person, and a new way of coping with everything without them, and a new way of filing things in your head - the "actual now and future" and the "this will never ever happen again". Right now all those things are blurry and it may as well be that he's just somewhere else while I'm having a few days doing stuff without him. 

But there is peace already, and I've been pondering where this peace has come from, mainly to check that it's not just denial. But I don't think it is - I think it's wonder. And this is where that wonder has come from....



I don't think I've ever hit a point in life where I feel like I was owed anything. I remember as a kid always wondering how come I got to be part of a big family, and get raised in a great church, and was born in twentieth century Britain, of all the times and places in the world to be born. 

When I got married we used to joke that we felt like at any moment someone would come and knock on the door of our new house and say "Hey, what are you doing? This isn't for real, go back to your parents!" I was 20 and he was 25, but we felt like a couple of kids pretending to be real grown ups and playing house. 

When we had children I could never get over that either. Like, do we really get to keep them? Forever? And we get to chose how many we have? And we were allowed to have five when so many people can't even have one, and we didn't have any miscarriages or anything. 

We got to do so much we wanted to. We were allowed to do youth work full time for two years. We got to go to bible college and study our favourite thing for three whole years. We got to visit Haiti, where Richard grew up. We said we wanted to plant a church, and not only did people let us, but they helped to support us finically too. 

And, to top it all, people chose to join our church too. 

I've never got over any of this. How come we got to do so much of it? I'm not saying it came easy - not at all. Richard often worked two jobs at the same time, and studied into the night for college and church. I've had little children at home for over twelve years and sometimes been far from family and familiar friends, while also working towards our degrees or our church plant. But I still never felt like we were owed it. It has still all felt like we have been so privileged to be allowed to throw ourselves heart and soul into stuff we love, and to eventually see rewards reaped from them. Some people never get that chance. 

I haven't exactly been waiting for it to crash around my ears, but I do know I have taken as many opportunities as possible to suck in moments and really appreciate what we've had. It's not usually been the easiest moments that have made me do this - it's been the times when a tantrum is being thrown, or our cash card has been rejected at the till, or I've been so exhausted that I couldn't stop crying. Those are the moments that have made me stop and look at what I do have, and love it all the more, because I know that things change and nothing stays this way forever, so I need to keep walking through that particular season until we come through it and things will change again and I will look back and see it differently. 

Never, ever, have I expected perfection. This world is messed up and I've had my nose in books all my life that show me that there is more to life than my little bubble. Everyone of us goes through hard times, although they all look different. This doesn't have to turn us into pessimists though. On the contrary, it should make us look at everything that happens to us and say "Wow!" It should make us seek the wonder in everything. The only reason we experience loss is because we had in the first place. If we start from a place of gratitude, then we see everything in life as a gift, and we don't begrudge the gifts that slip from our fingers. We are grateful for having it all in the first place, and we know we can trust the One who gives, because He's already shown is how good He is at giving, so who knows what else we will be given in the future?

There are still a lot of tears and anger, and wishing things were different, but right now nothing else is as powerful as the wonder, and I hope that it stays that way. Maybe if my grief increases, then my wonder can too. God is good like that. 



This week the children will go back to school and I will start doing some difficult tasks like ringing insurance companies and banks to change all our details. I'm not doing any of this alone, thank goodness, as I've been given help every step of the way. But I would appreciate your prayers, particularly for the kids as they step back into reality after a week of holidays and sunshine. 

And also as we make preparations for the service of celebration for Richard's life on Monday 9th. It will take place at 12:00 noon at Fulwood Free Methodist Church in Preston, with food provided afterwards, and is open to anyone who would like to attend.

Thankyou again for all the love, prayers and words of support that have been flooding in. It really is amazing, and helps to keep me filled with wonder.

Sunday, 25 May 2014

The End

It is over. Richard finally faced something he couldn't conquer, and he is now free from the fight and doing who-knows-what, who-knows-where.

Oh, how I wish I could see it. I know it's totally amazing, better than anything we can imagine with our physical minds, because it far outweighs anything we've ever experienced before. I know that there is no pain or sadness or worry, and that everything we've ever struggled with will suddenly make total sense because we will see it a way we've never been able to before.

A friend sent me this C. S. Lewis quote from The Last Battle:

"All their life in this world and all their adventures had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on for ever: in which every chapter is better than the one before."

That's what bring me hope and comfort. Not images of green meadows filled with rainbow ponies and candy floss clouds (which is what so many books on heaven seem to show). Heck, there was no way Richard wanted to leave his adventures on this world behind anyway, never mind for fluffy rabbits and people in sandals grinning serenely at each other. No, the next great adventure - the unknown chapters that get better and better - that's where my hope lies. All our frustrations with this world point us to the fact that we were made for somewhere else.


In the meantime, I am back, for the third time in my life, at that exhausting, core-sucking place where I have watched someone I love fade bit by bit by bit and fought so hard to change it any way I can. The images in my mind are still fresh of just what a degenerative disease, plus all the hard-hitting medicines used in a futile initiative against it, plus long periods of time where the body is debilitated and wasting away, can actually do. I could go into great detail about those last few weeks, but I am going to use the same tactics as I did for my mother-in-law and for Scooby, and keep choosing not to talk about them or give description to them, so that eventually time will do its thing and the memories will fade, and stop flashing into my mind when I'm trying to sleep.

But, as with all things, God can use them for good if you let Him, and right now the horrible parts of the end of Richard's life have a use, and that is to remind me how important it was to let him go. When those images come, I can turn them into an excuse to rejoice - his body doesn't look like that anymore! He has a new one! The old one was a trap, weighing him down, giving him pain and preventing him from doing what he wanted to do. It was wrecked and ruined, so why would I want to keep him in it? The new one is so amazing, we can't even picture it. And that's what makes it more exciting.

And as awful as waiting for death is, I am still glad that (for now) we don't get a choice about it. There is no quick and easy option to skip to the end - we have to let nature do its course, with as much comfort as modern medicine can bring us. So even though, in my sheltered experience, it's the worst thing I have ever ever been through, like a form of torture, I wouldn't want to change the law on it. 

This last week, as he faded fast, Richard found it really difficult to keep consciousness and kept fading in and out. He was easily confused about what was going on around him and couldn't always finish his sentences. But there was something so beautiful in the middle of all of it. Instead of the frustration of a busy mind that was desperate to do something "productive" and hating to be so dependant on others, I saw a man reduced to the character qualities that summed him up best: wanting to be useful, and consideration for others. All his dreams were about fixing things, and trying to make things better. All his interactions were about making people feel that they were understood and appreciated. Even though I stayed over to be with him while he was like that, he would frequently wake up and see me and say "Oh, you're here!'" and fall back to sleep with such a big grin that he didn't need any more words to show me how much he loved and appreciated me. While he was asleep he would chat to his dad and other friends about ideas and schemes for building things and seemed so happy doing it. Even when not fully conscious, he would thank the staff for everything they were doing and ask me if he was treating everybody okay and if he'd accidentally ignored people because he knew he was in and out of sleep.

One of my favourite moments, which turned out to be one of his last interactions with me, was caught by one of our incredible friends, who was sitting quietly crocheting in the corner. I'd leaned over to ask him something - maybe it was to sit up and swallow his meds or something - and as he opened his eyes and saw me, he said "Oh hello. You're very pretty. Can I please have a kiss?' 





It's compliments like this, of which there were many in the week, and only for me (thank goodness) that I am choosing to fix in my mind. When the adrenaline that I no longer need in case of emergency gradually fades and I can start doing normal things again, and I rebuild strength in my muscles that I haven't used for long walks and other exercise, and I can remember what it feels like to wake up in the morning and have a pre-planned schedule for the day, I will no longer feel like I have been ripped apart by this process. I will heal and be so glad that I walked him through every opportunity I had to be with him. I will treasure the few happy moments that I would've missed if we'd cut the journey short, and I will know that no matter how tired I was, and desperate to see his suffering end, and ragged by the emotions that pulled me all over the place and back again, that I did my absolute best for him, without holding back. Because physical suffering is not the worst thing that happen to us. We are so ready to run away from it and find comfort instead, but then we miss out on so much that will shape us, and deepen our understanding, and take us beyond limits we wouldn't have gone otherwise.

So I am not bitter about this. I am still waiting for peace, as I still can't accept this outcome yet without wanting to scream about, but I know that eventually the peace will come, and probably a whole load more unexpected blessing with it too.

So goodnight Richard - you now have your perfect peace, and soon I will have a less-perfect but still amazing version of it here too. See you soon xx


Sunday, 18 May 2014

How Are We?

This weekend has been like an oasis in the desert. Some amazing friends looked after the children for me for two nights, I did absolutely nothing at home and got lots of sleep, more good friends came to visit from far away, and best of all, after some really awful downhill days, Richard felt well enough to try and go on a trip out of the hospice. 

Deciding between the hospital, hospice and home had been a really tough decision when they told us we were looking at end of life care. The hospital was familiar and had lots of equipment and expertise on hand, but the hospice was nearer to home and had really nice facilities, including gardens with wheelchair access and lots of space for the children to play when they came to visit. We ruled out home because the tall Georgian design of the house meant Richard would have to be stretchered in and then just stay in a bed in one room of the house, with carers coming and going throughout the day, and then just us at night. We chose the hospice because we thought it would be the best option for the whole family, and it's definitely been the right decision. On Richard's bad days (which are now the more common ones) we are grateful that his pain relief can be quickly altered and his extra unexpected symptoms like swollen hands and feet can be seen immediately, but on his good days, especially when the sun is shining and he's able to be lifted into his chair, it's been even more worth it. And because we bought a car with a fitted wheelchair lift for Scooby (which he never got chance to use), we were geared up for making a trip away from the hospice at the first chance. On Saturday we nervously went for it and managed to get him into the car, through McDonalds drive through for a cheeky frappe, and onto the prom just outside our house in Morecambe. 

We met up with the kids there, and took Ace to the bike shop at the end of our road to choose a new bike. We went along the prom, watched the kite surfers and some kayakers, and bought ice cream. Then we headed back so we were still within our three-hour time period. Richard suffered for it afterwards - last night and today he was in a lot of pain, but hopefully we can do it again some time.

Here are the pictures:







The love we got on Facebook and Instagram for these was brilliant and much appreciated :)



Every day people ask the same three questions and it's always difficult to know how to answer them, so I thought I'd put them here so it's easier to see them:

How's Richard?

Different every hour. Some days when I'm with him he's drifting in and out of sleep for hours, then he wakes up just as I'm about to go and is really disappointed that he's hardly seen me. Sometimes we have phone conversations where he launches into all the repairs that need doing on the car and goes into great detail about sorting out tax and I'm totally lost in the amount of information he's giving me, and other times he falls asleep halfway through speaking and I have to talk loudly to wake him back up. Sometimes people are shocked when they come to see him and he is laughing and joking and making inappropriate jokes about death and we all wonder what he's doing in a hospice because he looks like a big fraud and we wonder whether he'll actually have months and months to go and may even recover use of his legs in the meantime. Other times I feel like he is already fading and I worry that I may get a phone call in the night to say he's taken a turn for the worse. 

For this reason it's been totally right for him to be in control of the visitors he gets. People have been really good at messaging him to check when to come, and he's really good at being honest about how he's feeling. 


How are the children coping?

Two of them are coping ridiculously fantastically (to the point I have to keep checking that they know what's going on) and two of them are going through hard times right now. I can't tell the difference between natural periods of growth and change, and anxiety about our family situation, so it's really tough knowing when to give them huge amounts of leniency, and when to be very firm. It's such a very very weird situation that there is no expectancy or answer for. I am very aware that I am mainly wanting compliance and quietness from them at the moment without having much energy to input fun and creativity back into them, but I am relying heavily on some fantastic friends and family who are amazing at giving the kids what they're missing from me at the moment. I really am so blessed in this department. And although I mess it up sometimes and really lose it when I don't want to, my secret is that I'm really good at pretending to be patient. I'm actually a very impatient person, but I'm a really good actor so I keep pretending to have far more patience than I actually do, so unless several things happen at once, or they're out of bed after 8:00pm, then I'm just about managing to be what they need me to be right now.


How are you?

I have no idea.

I wish there was someone else who could answer this question for me. I know I'm exhausted, and that's the answer I usually give. But apart from the exhaustion, sometimes I feel remarkably normal and have to remind myself of the reality of what's actually happening to us, and other times I just cry all the time at the tiniest of things, and other times I talk and talk about nothing and wonder what I'm talking about. My mood rises and falls with Richard - his bad days are my bad days and his good ones mine too. I am normally a very rational person but my emotions are doing very strange things to me at the moment - any change of plan or interruption to what I'm doing makes me feel very anxious and sometimes angry, and I have to spend a long time unravelling why. It's really unnerving, and makes me want to retreat from people even more. I am retreating more and more and would really like to be by myself so much of the time. I just want the kids to do what they're supposed to do at exactly the right time, and the rest of the time I want to be reading or sleeping or doing inane puzzles or other unexpected obsessions that keep overtaking me. I am watching and reading every bit of material on World War One that is being produced at the moment. I'm knitting a cardigan. I read all of the Harry Potter books in three weeks. I write down lists off the top of my head of all the British monarchs in order, or all fifty of the US states. I look stuff up on Wikipedia and generally fall asleep reading articles of people I've never heard of. I don't know why.

But if I need to make decisions or plan out tomorrow or finish a task or make a phone call or sort out some paperwork, my brain turns to mush and I can't finish a single thought. Thinking about the present is like a giant spider diagram in my brain - every thought is connected to another and they all link each other at roughly four different items a second, so there's no way I can remember where I started or why it was important, but I have thought of several other things that haven't been done, in the few seconds that it's passed through my brain. 

Thinking about the future is even worse - I see or hear something that makes me think "When everything's calmed down again, we'll do that," then I have to stop myself making plans that go beyond Richard, because it feels like a completely treacherous thing to do.

So I keep thinking about the past, which is sometimes lovely and other times gut-wrenching. But I have to think about something because my brain won't stop. 

And, of course, so many past memories are linked to Scooby, which confuses the situation even more. On Wednesday it will be D-Day - two years since he died. I don't feel I'm properly processing my grief for him (is there a proper way to process grief?) because I can't distinguish between the two situations. I compare his past to Richard's present all the time as so much of what they've been through is so eerily similar. I keep basing my expectations about Richard's illness on what we've already seen - for example that we would only have a month once the treatment was over and the end-of-life care started. When I get upset about watching Richard go through difficulties, it's often because it's brought back a memory of the same thing two years ago. Sometimes I'm even blasé about our current situation, as if I've seen it all before and know exactly what to expect. I have to remind myself that I'm not just facing memories that I've already lived through, and that can be boxed up and put to the back of my mind for a while longer - I'm actually living it right now, in this moment, and I still need to choose my reactions and work out what to do in the next moment.

So I'm a mess, really. Just hoping that at the end of all of this, when we get a miracle or death, that I'll be able to think again, and make choices, and find a way to work through all of this. I hope I don't screw things up too badly in the meantime to make the journey even more messy than it needs to be, but the knowledge that there will be a way is so reassuring. 



And by the way, how are you?



Tuesday, 13 May 2014

My Message

I don't have any words to describe how I'm feeling at the moment. I'm just going back and forth to the hospice to spend as much time with Richard as possible, and coming back to be with the children as much as possible, and then I'm sleeping as much as possible in-between (and thankfully, I am getting lots of sleep - that's one thing I'm not struggling with). Richard is having a few good days, where he can be hoisted into his wheelchair and sit up for a couple of hours, but more bad days where he drifts in and out of sleep and is uncomfortable.

For some inexplicable reason I found the ability to get up in church and speak a week last Sunday, which in retrospect is really weird, because I spent the week before it in pieces, and have been in pieces since, but felt it was the right thing to do at the time.

So that's what I'll share instead of my written words. This kind of sums up all the preaching I've done for the last couple of years really, and the reason that I will continue to feel bruised and battered by all of this, but not destroyed.


Home Church Morecambe 4th May 2014 



Tuesday, 29 April 2014

Deja Vu

(from Richard's status on Friday)

"Hi all. After my last very optimistic post I'm afraid things have not gone well. A couple of days ago we found that despite the good response to chemo several tumours have reappeared along with some new ones. Also my blood count has not recovered since the last lot of chemo. The result is that the docs are saying that there are no further treatment options that they can offer other than trying to keep me comfortable. Obviously this was a real shock to the system but we are getting our heads around it and we still hold on for a miracle. We'd really appreciate your prayers both for me but also for Esther and the kids. We know that God is always good, that he always does the right thing according to His sovereign will and so we continue to trust Him whatever the outcome.
I'm being transferred to the local hospice tomorrow where it will a lot better for visiting for the kids and there is outside space etc.
Thanks for all you love and support.
Rich"



The feeling of deja vu is so strong at the moment that I have to keep reminding myself that I am not just remembering past events, or rereading a book or watching a movie that I’ve already seen. I’m not sure if going through all of this for a second time makes it feel more or less real. It’s just so weird.

Richard’s decline - the loss of his legs, his shaky hand movements, the various medications he’s on, and the daily care plan that involves hoists, wheelchairs and blood transfusions - is so like Scooby’s, that it is eerie. Thankfully, he has chosen the same positive outlook, patience with his circumstances, quiet determination to try and recover use of his body, and vocal appreciation to all the staff for their hard work. Those two are more alike than I realised.

There are other elements that are the same too, and as true now as when I wrote them two years ago, so I’m linking the posts rather than repeating myself. First, there’s the season of pre-grief, where we’ve been told, after so much effort on the part of all the medical departments involved, that there is no more hope and the fast-acting disease will now just run its course while they make him as comfortable as possible. What I learnt from our experience with Scooby was that while it’s important to allow that to become a reality to you, there is no actual preparation for losing somebody you love. No matter how much time you have to get used to it, it only becomes a proper reality in your subconscious about a month after they’ve actually gone. So although I am permanently feeling sick at the moment, and have times where I can’t talk because I’m crying too much, I am also embracing the times when I feel normal, and making the most of them. We have discussed the future and made sure of important practical details, but I am reminding myself over and over that right now, he is here. I can’t allow myself to keep thinking about a time when he won’t be (how can you imagine someone you’ve known all your adult life, who you’ve had your greatest adventures with, and who has been part of every grown-up decision you’ve ever made, not being with you anyway?) because then I won’t be able to function, and while he’s here, I am embracing that and enjoying being with him.

Then there is the element that tells me that while he’s still here, there is still the possibility of a miracle. Where there is still life, there is still hope, and no matter what has happened before, we still believe in the power of God to turn any situation around. So we keep fiercely praying and asking, knowing that it’s totally up to God for Him to decide, and that this thing ain’t over till it’s over.

And finally, my favourite: victory. Whatever happens, there will be cause for rejoicing. We want more years on this earth for Richard, but we know that the thing we fear the most is actually the best adventure of all - to be with God face to face, like we were created to be. In the middle of the heartache, I just keep smiling, knowing that no matter what happens to our family, it still can’t separate us from God. There’s actually nothing in the enemy’s arsenal that can do that. We've seen what God can accomplish in the worst of circumstances, and so I keep standing firm, ready to weather the next challenge and waiting to see what He'll do this time.

Wednesday, 16 April 2014

Tenacity

The fifth attempt at finding a chemo that will work has been started, and Richard spent nine days in Barrow. It's a lovely hospital in a gorgeous place, but when it's over a hundred miles each time to visit him, and he was there an extra six days because there was no room to have him back in Lancaster - well, you can imagine how frustrating that was!

As with all the other chemotherapies that are supposed to knock a normal human off their feet, my husband is tolerating this one very well, with no sickness and just a bit of tiredness, even when he's needed a blood transfusion to bring his platelet count back up. 

His tumours have been described as "treatment resistant", but I think another name for them should be "Scholes tumours". Just like my man, these things have progressed rapidly, barely halted at any obstacle in their way, dodged heavy artillery thrown at them, and found a way to regroup and keep going no matter how many defeats they've faced. He has kept going through all of it, no matter how much pain or discomfort or heavy pain relief he's been on, and has kept on doing jobs round the house, taking the kids on adventures, creating new concoctions in the kitchen, all up until the day his legs stopped working three weeks ago and he's been bed bound ever since. It's the first thing in his life that has literally stopped him with no way to get around it.

There has been no improvement in them yet. He can slightly move his legs from side to side, and has sensation in them even though it doesn't feel like normal. So far the doctors have wanted him to try resting them first to see if that will make a difference, and then we've been focusing on coming through the chemo and the ugly side-effects it has on his body, and next we are going to pursue a plan for getting him out of that bed. Even if it's just into a chair, so he can be wheeled around - that would be an improvement and would release him from hospital for periods of time.

We are really really blessed to have a car fitted with a wheelchair lift that we bought when Scooby couldn't walk. Unfortunately we never got to use it with him as he never came home, but we have been using it in the last year to bring a lady to church who otherwise would not be able to come. Margaret lives in a nursing home further down the prom and cannot use her legs since having a bad fall two years ago. She spent a whole year in hospital and then couldn't go home because of the level of care she needed and so she had to go to a care home. At first she was very unhappy, as I think we all would be to give up our home and independence, and she couldn't go to her church in Lancaster anymore. So Richard offered her a lift to our church in our car, and she's been coming ever since. She has gradually adjusted to life in a different town and has become part of our church family. 

A couple of months ago though, the lift in the car stopped working. It looked like several parts on it had broken down at once, and within a couple of phone calls we'd found out that only a specialist workshop in another city could fix it, and that it would cost a lot to get it working again. My reaction was that it was a shame and we would miss bringing Margaret to church, but I wasn't born a Scholes. In the middle of long hospital stays, increased pain and pressure in his spine, and devastating scan reports that made me want to curl up into a ball and stay there, Richard was totally adamant we were going to get that lift fixed and see Margaret back in church. Between hospital appointments, he arranged for us to take the car down to Manchester and get it repaired while we spent the day at the Trafford Centre. 

He couldn't walk properly around the Trafford Centre, but that didn't stop him either. He moved from bench to bench around the middle and made sure that I got to visit all the shops I wanted, bought loads of stuff for me and the kids, and didn't complain once, even though he was in agony. That Sunday Margaret was back in church, beaming after missing her weeks away, and Richard got to welcome her, although he's missed seeing her after that as he's been in hospital every week since. 

So now we have two reasons for our wheelchair lift, and I hope that Richard will get to use it really soon. 

In the meantime, the amount of patience, dignity and respect he's shown to everyone around him while he is utterly dependant on help for every task has blown me away and proved once again that God brings good out of every situation, no matter how difficult.