2 Cor 12v9

Wednesday, 24 April 2013

What Wasn't

As I wrote two posts ago, it’s been a strange few months in the Scholes house, with Richard struggling with lots of back pain, and visits to the doctors and physios to try and find out what’s happened. All his symptoms pointed to a slipped and ruptured disc in his back, which we anticipated and were trying to plan how we would manage church and family during the surgery and recovery time afterwards.

We were pretty thrown then, when he went for the scan and the nurse came back in a few minutes later, as we were about to leave, and said “There’s something unexpected on the scan, we’d like to do some more please.” An all-too familiar feeling rose into our throats as we looked at each other, pretended to be fine, and said “Of course, that’s no problem.” He went back into the MRI machine, this time with dye in his blood and for a longer amount of time, and then we saw the consultant who confirmed that although the discs were fine, something unusual was happening at the base of his spine. In the next few days, blood samples were taken, phone calls were made, high levels of protein were found in his blood, and a biopsy, which involved something like a hammer and a chisel akin to a mediaeval torture method, was taken. More scans were done, over every major bone in his body, and a blood clot was found in his leg. Nothing was left but to wait.

This is what we were waiting for: a diagnosis of myeloma. All the symptoms pointed towards it; there wasn’t anything else on the table. Myeloma is a rare form of bone cancer. It is less aggressive than other cancers and is ‘treatable’ – meaning the symptoms can be slowed with medication, and even virtually halted with a bone marrow transplant, but it is terminal. It always comes back, and the life expectancy once diagnosed is up to about seven years.

So the last few weeks, it has felt like someone punched us in the stomach every morning when we woke up. We've been chatting about ordinary things, like trips and meetings, then wondering whether we’ll get to do any of them or whether we’ll be back to living with suitcases by the door and emails from hospital rooms and never knowing what we’re going to do even a week in advance. We’ve had conversations about life insurance and mortgage payouts, and shed tears when we’ve talked about the kids’ educational future and holidays we want to do with them before it’s too late. He’s been thinking about who to train up to take over the church leadership from him, and he started giving his three year old daughter tips on how to pick a future husband.

And of course, we have prayed like the clappers.

Today, I had an amazing conversation with someone in our church who was waiting for medical test results and they had come back totally unexpectedly clear. I was crying and thanking God and whooping down the phone at the good news. When I hung up, I saw a text on my phone from Richard. All I could see were the words ‘myeloma in biopsy’ standing out to me from the middle of it. My heart went cold as a realised that this was what we were waiting for – the actual confirmation of the actual disease that was going to steal my husband. I read it again and was confused by the other words around it. After some of the slowest few seconds of my life, I realised that in front of the word was a big fat NO. No myeloma in biopsy.

No. Myeloma.

Now, I’m very aware that if it’s not myeloma, it’s got to be something else, and that my husband is still in a lot of pain, with something wrong with his spine, and a large blood clot in his leg, and too much protein in his blood – BUT right now it’s NOT terminal cancer, so, like my brother-in-law, who yelled so loud when he heard the news that most of Morecambe must have heard him, today we are celebrating that our future together looks set to go beyond the year 2020 and that it seems like we have just had a death sentence lifted from our shoulders.

We still don’t know what the future holds (and we are really glad for the clarity that has come to us in the last few weeks, asking ourselves where we would go and what we would do if we only had a short time left, and finding out that the answers were ‘right here’ and ‘exactly what we’re doing now’), but we now know what it doesn’t hold anymore, and that’s good enough right now.

And for whatever we do end up facing, this is what I wrote last week, when we were sure the worst was about to be confirmed:

It's time to do battle again. Not that we ever stop - life is a battle from birth to death - but sometimes the battle crosses from the internal and the unseen to the glaringly obvious, where the stakes seem higher and the end result more frightening. In reality, it's probably no worse or damaging to our future than what goes on inside of us everyday, but when the symptoms go public, so does the fight.

What do I mean by doing battle? Realising that there's a much bigger picture than the physical one we see in front of us, and that every thought, attitude and condition of the heart matters. It's not denying the reality of the frightening situation in front of you, but it's knowing that every tear cried does not go unnoticed, but is counted in the price of staying by your post when you feel like crumbling. It's not feeling strong all the time; it's allowing your frailty to drive you towards the ultimate stronghold, Who protects and comforts at all times. It's not claiming that everything in your life ought to be perfect because you're a good person; it's deciding (and redeciding when you feel like changing your mind) that it doesn't actually matter what happens TO you at all - it's what you allow to happen IN you in the meantime that counts. 

So we will fight again, despite feeling battle-weary, because we’ve now seen what God can do in the worst time, and that victory is not all we expect it to look like. We will do whatever it takes to stand firm and keep going, even if we have no idea what will happen in the future. What else is there? Really? Nothing that I want. So bring it on - we’re ready.

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." James 1:12 

Sunday, 14 April 2013

Disneyland Paris

We've just returned from a five day holiday at Disneyland Paris (yes, I wrote this two month ago. It's taken me this long to finally add the photos to it, due to a phobia of inserting and accurately aligning more than one picture into blogspot at a time. It's hard work and has taken me several goes. Do you hear me blogspot website managers? HARD WORK). (And don't get me started on the highlight of the text that can't be removed - it makes me want to cry. I only have OCD in one area of life and that's in published material. This is killing me.)

It was incredible. The time of year meant that it was pretty quiet (although pretty quiet at Disney is like peak season for most UK attractions) and so instead of spending half the days in queues, we were able to go from ride to show to meet'n'greet, etc, with only a five minute wait most of the time while we waited for the group in front of us to finish. I think we only queued for more than ten minutes about six times the whole time we were there. It was cold (though not as cold as it should have been) and it rained quite a bit but it was worth putting up with just to be there.

We took oodles of photos, of course, so here are just a few to show what kind of memories we made:

 Waiting to get on a plane. Although the older three boys have been on a plane before, they were too young to remember it, so this was a first experience for all of them really.

Rocky decided the emergency evacuation procedure looked like some kind of fun park in itself with all the slides and inflatable trampolines. He was disappointed when I told him we hopefully weren't going to be going on it.

The reason we got such a great deal: the twentieth anniversary celebrations.

The main guy himself, waiting for us when we came down for breakfast. We made him queue to meet us ;)

The only thing we actually had to  wait in a queue for was to meet the Disney Princesses. Baby totally bowled all of them over, chatting to them as if they were her best friends.

Manly kind of carouselling. 

She was desperate to see Minnie Mouse, so when we spotted her on the third day, we released Baby from her pushchair, and she flew through the crowd around Minnie and threw herself on her. I pulled her away and apologised, but instead Minnie waved the rest of the respectfully waiting crowd away, and brought Baby back instead for some fierce cuddles. Love how you can get away with anything when you're two.

Me and my boys on the Slinky Dog ride (you sit inside Slinky's spring).

 The biggest Buzz Lightyear you're ever gonna see.

 Turtle parachuting.

Loved the stained glass windows telling the story of Sleeping Beauty. 

Rocky meeting one of his favourite book characters. 

Just before filing missing child reports, we found them with Pluto. Apparently anybody wearing a Disney character costume is as safe as (but more interesting than) your parents, so if you see them, you're allowed to abandon your family in pursuit of them. It took a while for them to understand this is not true.

Jack Sparrow was brilliant. The benefit of off-season is lots of time at the Meet'n'Greets. He wouldn't let them go till they perfected their "aaargh"s. 

A favourite spot.

 Don't even know how to caption this. It's just too cute.

It wasn't our first trip to Disneyland.  Five years ago, for its fifteenth anniversary, it had a kids-go-free offer, and we got an unexpected chunk of money, so we decided to go. Turtle was six, Scooby and Ace were four, and Rocky was just six months. It was a busier time, so keeping them all occupied in the queues was really hard, but it was fantastic, and of course our experience stuck with us for a long time afterwards. We always hoped we could take them again in the future, but doubted we could afford it, and then with Scooby's illness, we couldn't plan holidays anyway.

When it was clear that Scooby's illness was a long-term thing, a nurse from our local hospital recommended we should apply for the Make-a-Wish Foundation, so we did. We put Disneyland at the top of the list, as Scooby chattered about it quite a lot, and we knew they often made special arrangements for the medical side of things, which was our only chance of getting insurance to travel abroad. Of course we didn't tell him about the application, but the more ill he got, the more the whole idea of Disney-related stuff seemed to help him through things. When he couldn't do anything other than listen to stories or watch movies, we got through loads of Disney books and DVDs, particularly the Pixar Shorts which he found hilarious. He frequently asked for MRIs because in the scanner, to help sooth the noise of the machine, he could listen to Disney soundtracks. Once we understood why he kept asking for brain scans (!), we downloaded Disney music tracks for him to listen to in his hospital room. And the last few times he was able to interact with his siblings, he would ask them to get on his bed and they would all pretend to be at Disneyland - to be going on a boat on the way there, and then on the different rides.

I was gutted when we got a call from the Foundation to tell us that they were going to grant his wish and I had to tell them that he'd died two weeks earlier.

So when his Child Trust Fund was released to us a few weeks later, we decided that given the choice on what we spent his money on, he'd have wanted us to go to Disneyland. As it was now the 20th anniversary, there were more special offers on, but although we could now afford a large chunk of it, we would need around a thousand pounds to afford the rest. We put the decision on hold while we decided whether we thought we could save the rest somehow.

A few days later we received a letter in the post from a friend of my brother, who we had never met, but he had been following our story and praying for us along the way. He was one of the trustees of a charity that his grandfather had bequeathed, which would help families with sick children. He'd brought our situation to the other trustees and they had decided to grant us some money to spend specifically on treating us as a family to something special. The amount was one thousand pounds.

We were overwhelmed with the generosity of strangers, and the specific provision for something we didn't need but had wanted. It was incredible, and one of the many ways in which God kept revealing His hand to us in the difficult first few months. We booked the holiday, and then had the added excitement of waiting to tell the kids. On Christmas Day, we had wrapped up some of their Disney toys attached to letters, so they were confused to open a huge exciting-looking box only to find their existing toys inside, until they rearranged them to work out what they said!

Thanks to even more generosity of family, and waiting till the last minute for a great deal, we changed at the last minute from driving to flying. Although Turtle and Ace had flown a long time ago, they were too young to remember, so it was a first for all of them to fully experience going on an aeroplane. In Rocky's words: "It made me feel all tickley inside - I think my tummy likes flying!"

I thought beforehand that it was going to be tough to be there without Scooby, and that we might spend some of the time really upset that he wasn't there. But it felt really different for a start. Turtle and Ace were five years older, so they saw and experienced things really differently to how they had last time. And five years ago, we only had three children who could join in and enjoy the experience - this time there was four sets of reactions to watch instead. Plus we'd skipped quite a few things last time because they were "girly" so this week we found all sorts of new attractions that we hadn't seen before, and the boys definitely enjoyed them more than they thought. (We didn't make them queue up to meet three different princesses though - they ended up going on the Star Wars simulator three times instead!)

A couple of times I got a hit of emotion - once as the parade came round the corner for the first time, and also when we were buying their toys on the last day ready to leave, because they were two of the things I remembered so clearly from five years ago, that it was like having flashbacks.

But apart from that (and the plane ride home when it all hit me again), we didn't spend most of our time mourning for him. Of course I thought of him loads, and of course I wished he was there, but it was me being able to experience his reactions that I missed. I don't feel at all like he was missing out on what we were getting to do, partly because I know he DID get to go five years ago, but mainly because I know that what he's experiencing right now far outweighs any trip to Disneyland or any other pinnacle of childhood.  It's not for his sake that I feel any sorrow, but for mine. I feel so impatient to be where he is, and so relieved for his sake that he's not limited anymore (I can't imagine what stage of his illness we'd have been able to take him at if things had worked out differently, but I'm sure there's loads of stuff he wouldn't have been able to do). I'm so glad we were able to treat the other four children to something special on his behalf, and for the way things seemed to come together so well to make it all happen. We've been incredibly blessed, and we are incredibly grateful.