2 Cor 12v9

Thursday, 31 May 2012

Saying Goodbye

In 2001 I was at Spring Harvest – an Easter gathering of thousands of Christians – when Stuart Townend and Lou Fellingham introduced the new song ‘In Christ Alone’. I remember how they did it, by doing each verse through twice and a long musical interlude between, to let the reality of the words sink in. By the third and fourth verses, the volume in the room was incredible as lots of people realised the power of this new modern hymn.

We didn’t know it then, but nine months later we would be giving birth to our first child, and preparing for his dedication service in church. As we thought about what song we would like to use for after the vows, we knew it had to be ‘In Christ Alone’, not just because it’s an amazing song, but because it spans through the gospel and how that applies from the beginning all the way through to end of our lives, especially in this line: From life’s first cry to final breath, Jesus commands my destiny.

I don’t know if it was the drama student in me, or whether God was preparing my heart even then, but I remember thinking as we chose that song, ‘I will sing this at my children’s dedications, and, if I have to, at their funerals too.’ I knew I couldn’t honestly sing it at their birth unless I was also prepared to sing it at their death. So we sang this song for all four boys’ dedications.

And on Monday we sang it at our boy’s funeral. Thanks to God’s grace, and the perfect peace that passes understanding, I was able to mean it as much that day as ten years, eight years and four years I had done previously. The morning service was in a small chapel, but the seventy-odd voices that sang that song could’ve lifted the roof off that building. Before and after each song, there were sobs and sniffles as we remembered and said goodbye to him, but during the singing every voice seemed to be lifted as high as it could go.

Later in the afternoon, a few hundred gathered in a bigger church for the celebration of his life service. This time, with a much bigger band (made up of our family and a couple of close friends), the physical volume was much louder but just as powerful as the first service. Every song was chosen deliberately because it spoke truth about life and death, and I don’t think I’ve ever been in a more powerful worship service. Instead of whispering the words like I thought I would, I could sing them louder than ever because they were more real to me than ever before. Because this is still not the end. As his eight-year-old twin said when he went back to his brother's grave at the end of the service, 'Goodbye Daniel. See you again at the end of the world.'

Below are links to all the songs we used, the first three in the morning and then the three in the evening. For a short time, the celebration service is up on my home church’s website – www.fulwoodfmc.net/blog if you want to watch. It can’t quite capture how amazing the music was on the day, but if you get the chance to watch or listen, it’s well worth it.
In Christ alone my hope is found,
He is my light, my strength, my song;
This Cornerstone, this solid Ground,
Firm through the fiercest drought and storm.
What heights of love, what depths of peace,
When fears are stilled, when strivings cease!
My Comforter, my All in All,
Here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.


Great Is Thy Faithfulness: http://www.youtube.com/watch?v=25_LVO_YV74

There Is A Day: http://www.youtube.com/watch?v=m0W6O6ZYadc&feature=related

God Is Able: http://www.youtube.com/watch?v=JTSknArjnWM

I Can Only Imagine: http://www.youtube.com/watch?v=0xwzItqYmII

You Never Let Go: http://www.youtube.com/watch?v=b61wsBdqrKM

Saturday, 26 May 2012

Never Alone

The most unnerving thing for Richard and I since Monday has been that we are together without Scooby. So much of the last several months has been spent apart, but when we weren’t with Scooby, we knew that the other one was.




The boy has never been alone – never without another family member by his side. As a twin, he came into this world with instant companionship, and he and Ace, and usually Turtle (who called Scooby his best friend) too, went through every life experience together – nursery, preschool, school, trampolining club, etc – until he first went into hospital aged six years and four months. Then the dynamic changed – as Ace learned to manage without his birth buddy by his side, Scooby got used to always having a parent with him as an inpatient and an outpatient in hospital. When his seizures started, around his seventh birthday, Scooby was no longer able to join Ace for ‘normal’ activities like school trips or swimming lessons. I had to accompany him, with a baby and toddler in tow, for any extra-curricular activities and watch him like a hawk, and eventually as his abilities depleted, his world shrank to consisting of home and hospital. Since his eighth birthday, he was unable to do anything for himself at all, and was extremely unstable, so Richard or I were constantly by his side. We got used to doing nothing together and settled for just handing over batons to each other. If we weren’t with Scooby, that meant that the other one was. We were either on high alert with him, or looking after the other four at home. Setting the table for five instead of seven was fine, because that meant the other parent was with him.

So the first time we set the table for six this week was incredibly hard. Looking at each other at home and knowing that meant neither of us was with him felt so wrong. Allowing him to make the biggest journey of his life, from here to eternity, has gone against every instinct that has been in us since his birth.

Although it wasn’t an easy transition, we have turned our world upside down in order to take care of our extremely disabled child. We have sacrificed normality for the hope of keeping him alive and saving him from this terrible disease. We chose to close many doors and make our world smaller, so that we would have the privilege of being his carers, for as long as he needed us to be. I never thought that pushing a eight year old child around in a wheelchair, cleaning his skin daily, changing his nappies, feeding him, willing him to speak and respond, and throwing our arms around his shaky body many times a day until his seizures passed, would feel like a privilege, but it really and honestly was. Until the last week, when he couldn’t communicate at all, he never stopped being the Scooby that we knew and loved. And so no chore, from cleaning and bandaging his blistered skin, to enduring many many interrupted nights, was not worth being with him. Not because we are saints, nor because he was one (some mornings he had a lot of apologising to do after being ratty in the night), but because we got the chance to experience a love that goes way beyond squeamishness or inconvenience, and we knew it was more than worth it.

In one morning, we have our marriage and our future back, and our very tiny world has been thrown wide open again. This is about as unnerving as an agoraphobic stepping out of a caravan and onto a gigantic festival field. I would go back in a second if it was an option. I have no idea how to make decisions about the future ever again. There are too many options, too much space, too high a price to pay for our freedom. Without knowing God is the author of all things and that this is all part of a higher plan, I don’t know how we would move forward.

But Scooby will never ever be alone. Scooby has gone on, to the Parent who loves him more completely and faithfully than Richard or I ever could. God’s arms are stronger, His abilities greater, and His comfort far more amazing that what we have had the chance to offer our boy. His life now is completely fulfilled. I cannot imagine Scooby without his two brothers eitherside of him while he runs and laughs and becomes all he was destined to be. But I know the truth of the Word, and that is what I will stand on.

In time, Richard and I will stop feeling guilty that we are sitting next to each other in the car, and sleeping next to each other in the bed. We will stop watching the other children like hawks and being paranoid about their nightly breathing patterns, fluid intake and infection risks. Our adrenaline levels will settle again, and we will stop living life on high alert all the time. We will stop viewing life from one hospital trip to another.

Because we are not alone either. Although we cannot yet see Him face to face, we can still know the God of all comfort, and the Prince of peace. We can trust in His plans when we have none. There is purpose and a future in all of this. We are, and will be forever, never alone.

Wednesday, 23 May 2012

Forever Safe

On Monday 21st May 2012, Daniel Joshua Scholes left the darkness and the imperfection of this earth and went into the glorious light of seeing God face to face. 

His was not an eighty year marathon, but a sprint that lasted eight years, eight months and five days. The prize is the same, but the earthly pain was much shorter.

His body went through more than most of us will endure in our lifetime, but he never knew the grief of losing a loved one, the pain of loneliness or the disappointment of being let down by those who loved him.

I cannot yet come to grips with the fact he is not here anymore, and never will be again, and that Richard and I cannot care for him any longer, because we had the privilege of doing that from the day he was born until the day he died. My head knows he is in a better place, but my heart still needs to catch up.

A friend sent me this conversation she had with her own kids last week and it has helped me to glimpse what forever might look like:

I was trying to explain the concept of eternity to my kids the other night (like I've got my head round it myself) and asked them to imagine that the 'Complete works of Shakespeare' was our whole time on earth, (no matter how old we are when we leave it) AND our whole time in heaven too. Asked Jackson to turn to the page he thinks he's at right now (as he and Scooby are the same age). He flicked for a bit then eventually chose pg 94 ('Measure for Measure', Act 1, scene 2).


Page 94 out of a 1433 page book.


I was like 'Nuh-ha... Our time here is like a book that goes on FOREVER and the ONLY bit we get to live on earth is this 'C' (In Complete' on the title page) even if we live to be 100!! And all this bit of our story (The comedy of errors) is with Jesus and here (Much ado about nothing) is with Jesus and these pages (The merchant of venice) are with him (As you like it) and we never cry (The taming of the shrew) even if we fall over (All's well that ends well) because he promises (Twelfth night) that we CAN'T be sad about anything anymore (King John) because we're with him (King Henry the 5th)... and there's still loads of the book left, see?'


Madi looked really puzzled then and cried 'We can't cry for Scooby then can we cause he'll be happy to see Jesus! It's just we'll have to be sad for his mum and dad and brothers and baby and all the other people what he knows!'

On Monday 28th May we will have a small private funeral for Daniel where we will lay his small and exhausted body to rest. Then in the afternoon, we will have a huge celebration. It will be the party he never had to celebrate his recovery - instead we will celebrate his life and the amazing eight years we got to spend with him here on earth. It will be at 4:30pm at Fulwood Free Methodist Church in Preston, and everyone is invited to come and join us.

If you have any pictures of Daniel, or have a specific memory of something he did or said, we would be really grateful if you could email them to scoobyscholes@gmail.com so that we can put them together to show many different aspects of his life, whether it's poignant or funny.

Daniel's life on this earth is over, but his story is not. We know that God has more to come.

Saturday, 19 May 2012

Victory


This morning Richard and I took communion at our son’s bedside. We talked, as we have all week, about heaven and healing, and the past and the future. And once more we talked about where the victory lies in this situation, whatever the outcome.

There are so many healings in the bible, but what happened to those people who were saved from their illness? Eventually, they died. No-one stays on this earth forever.

So what were the healings for? To demonstrate God. To show us He is the creator and sustainer of life, He is the healer, His power is greater than ANY force in this universe, He has great compassion for those in need and, especially when he raised the dead, that He has complete victory over death, destruction and despair. He is Lord of life and defeater of death. That’s what healings show.

Jesus’ death on the cross brought us freedom from sin and healing for our bodies. Most importantly, it made a way to God. On this earth, that means that we can know God and walk with Him and not be a slave to sin, but beyond this earth, it means we get to spend eternity with Him.

Eternity. With. Him.

It’s what we were created for – being with God. It’s why this world will never bring us the happiness and satisfaction that we yearn for inside. We were created for being with God. And Jesus achieved that for us.

On this earth, we get an insight into what that’s like. In heaven, we get the real deal.

We would like another miracle – that of keeping our son a bit longer. But the real miracle has already happened. Knowing God and being known by God. Our son has experienced this, we have experienced this, and even through our story, which ought to cause gloom and despair, more people are beginning to know this.

Watching our son slip further away from being the boy we know is still incredibly painful. But now there is peace. Our tears are not out of fear. Our sorrow is not out of despair. There is as much victory in this stale hospital room as there as ever been in a temporary earthly miracle, and this victory will last forever.

Friday, 18 May 2012

For The Bible Tells Me So


We are on day five of watching our son fade and my whole body feels at war with itself.

My physical body is tired of the fight and wants things to come to a conclusion so it can find peace again. It cannot sleep or eat or rest properly.

My mother’s heart looks at our war-weary boy and wants to release him to a much better place where he doesn’t have to do this anymore. This is the part of me that climbs into bed with him and regularly whispers to him about heaven, about how wonderful it is and how it’s okay to go there, because for him it will be like a twinkling of an eye and we will all be together again. It’s the part that asks God to take him sooner rather than later, even though it’s the last thing I want to say.

But there is a part of me that will not let go. I thought it was the selfish part of me that wanted to keep him for longer, but I have realized it is not that. It is the part of me, my spirit, that has walked with God for many years, and has yearned for Him and learned from Him. It’s the part that is fed not by sight or by feelings but by His Word. This part of me knows God, and knows His promises and will not lie dormant. No matter how much I know we do not deserve a miracle, my spirit tells me that God is able to do immeasurably more than we ask or even imagine. It tells me that the prayers of a righteous man are powerful and effective, and there are THOUSANDS of people who have been made righteous by Christ who are praying for our boy right now. It tells me that God hears the cries of the righteous and that His arm is not too short to save. It tells me that God’s hand rescues people right ought of the lowest pit, right from the grave. It tells me God is able to part the seas, flood the earth, move mountains and heal people from terminal diseases with just one touch of His garment. It tells me that Jesus saw sick people and had compassion on them and His heart was stirred to heal them. It tells me that the Holy Spirit inside of us gives us power to cast out demons and heal sick people. It tells me that by Jesus’ wounds, we are healed.

Whether I’m reading His Word to my boy or myself, or sleeping holding it to my chest at night, or even nowhere near it, these promises are pulsing through every fibre of my being.

So how can I stop fighting and let go of hope when all my spirit knows is the God of All Hope?

Wednesday, 16 May 2012

Closing In


I have no idea how to put it into better words, but on Monday morning Scooby began the process of dying. He changed very quickly overnight and we are working very hard on keeping him stable and comfortable. I don’t want to go into details of what it’s like to watch – I’m sure you could imagine and probably don’t want to. The blessing is that the shaking that has plagued him for so long is gone – his muscles are completely rested.

He’s had a few moments each day where he’s communicated with us a little bit, and a few moments each day when we thought it was all over and then he’s restabilised again. He is living up to his nickname of Tenacious D but we have reminded him that he doesn’t have to. He can go whenever he feels he is ready.

Waiting is the worst agony we’ve ever known. One minute there is peace, the next there is fear, then there is hope. There is a lot of weariness mixed in with a huge amount of adrenaline – everytime his sats dip or I think about what the end will look like, this surge goes through my body – plus a million thoughts about the past, present and future, which all means it is impossible to sleep.

Richard and I are both here, thanks to the amazing support of family in Preston who are looking after the others. It’s hard being away from them and not knowing how long this will take, but they are being very well looked after. On Monday we sat with the two older boys and explained to them what was going to happen. We’d told them a couple of weeks ago that the doctors thought their brother was not going to get better, but we realised later that what they had heard from that was that he was going to stay the same. Explaining to them this time, over hot chocolate in the hospital canteen, what it actually meant was heartbreaking.

We still have the hope that the One who is Lord of Life and Defeater of Death will step in. I have given Him approximately one gazillion reasons why it would be a really great idea, but I’m still standing on faith for Him to make the right decision. This involves a lot of ignoring how I feel and a lot of looking upwards. It hurts, but you already know that.

Sunday, 13 May 2012

Forwards and Back Again

So much has happened in the last ten days.  I have been to my cousin's wedding and my great uncle's funeral, and to church twice last Sunday, and seen more people than I have for the rest of the year put together. Richard came to the wedding with me, making it our first day together away from hospital this year. The other things I went to with the other children and extended family around me. All of them were tough, but all of them were well worth it.

I loved being able to worship in church at each event. I really miss doing that on a regular basis. It wasn't like normal worship though - it cost a whole lot more this week. Talking with people, singing songs and listening to preaching and sharing from the front while having a background loop playing in my head that says; 'Your son is dying,' is the most expensive kind of fellowship I've ever known.  But after each time, after I'd managed to raise my hands and voice, the peace and real-ness of God that came at the end was amazing.

We also had an amazing meeting this week with about fifteen professionals from all over the north west who are trying to make our desire to spend time together outside of hospital a reality. These people are pulling strings left, right and centre to gather all the equipment and support networks in place so we could bring Scooby home, even just for a visit. We were overwhelmed with the amount of people who are giving up their time and offering costly services just for us. The first step was going to be a few days in a hospice next week, where all of us could be together, but then we realised that because Scooby had contracted a hospital bug (CPC) a few months ago, he wasn't able to go for infection reasons. Still, we had a bed and hoist delivered to the house in Preston, and had a practice run at driving Scooby round the hospital block in our new wheelchair accessible car, so things were in place and ready to go.

Then at the end of the week, his temperature, stools and seizure patterns showed he has another infection. It's not showing in all the tests so they don't know what anti-biotics to treat him with. His oxygen levels keep dipping, and so now bringing him home is looking less and less likely. He'll have a CT scan tomorrow to look for a chest infection and anything else they can think of to find it.

From hope to despair again.

Please keep carrying us in your prayers. Thankyou.

Thursday, 3 May 2012

Strength



I cannot thank everyone enough for the amount of support we are receiving. As I put on Facebook last week, it feels like we’ve fallen off a platform but are crowdsurfing instead of hitting the floor. The messages that people are sending, publicly and privately, are incredible. I don’t always get chance to reply to them straightaway depending on what’s happening, but each one feels like another hand upholding us. As well as the commitment to pray for our boy, I have been amazed at the lovely things people have said about us too. One phrase in particular has been running through my head this week and as I thought about the concept of being seen as ‘a strong person’, I was hit by the inverted reality of that concept.

The truth is, I am not what this world would see as a strong person. I am an extremely weak person – not a fighter, but a flighter. When troubles come, my first instinct is to curl up into a ball and go to a happy place in my head until it passes. This is why I love to read or watch stories, from books to blogs to TV series – it takes me somewhere else. Some women, when troubles hit, go into overdrive. Their anxiety drives them to clean, organise and get a stranglehold on every aspect of their lives in order to get some kind of control. I know this can be as much a form of denial as crawling into bed early and watching a movie, but I really wish that was my default position instead. At least I would be falling apart in a tidy environment instead of a messy one.

It is my obvious weakness – very obvious to anyone who has been to my house in the last few years – that drives me at some point nearly every day to throw up my hands and say ‘I can’t do this!’ I have no illusions whatsoever that I am the sort of person who can handle a tragedy on this sort of scale at all. As each week rolls around, and new depths of circumstances are plummeted, and we see our boy getting worse instead of better, and normal life seems to be slipping further and further from our grasp, I give up over and over again. Some weeks almost every morning I wake up and say ‘I can’t do this today.’ I’d rather get the children in my bed and let them watch CBeebies for two hours than let my feet hit the floor and have to face life AGAIN. I’m taking the ‘not-a-morning-person’ to new extremes. In fact, if my children were tall enough to safely make a cup of tea for me, I don’t think I’d get out of bed till lunchtime on those days.

Although I’ve usually got myself into some sort of better shape halfway through the morning (not due to my own strength but due to the energy, fun, and new challenges thrown at me by the children), I still struggle with the everyday decisions. The post through the letterbox normally throws me off because I never know what to do with paperwork; I move too quickly from one activity to another without leaving time to tidy up inbetween; I start jobs then realise there was something else more urgent that needed doing so I leave things half done; if we have to leave the house for something we are inevitably late and leave a trail of mess behind us.

And I can’t claim that I was on top of all this before Scooby’s illness, because I really really wasn’t. I was already unreliable and disorganised. It’s just magnified all the weaknesses that were already there.

I am not strong.

But I do follow an extremely strong God, and He has this amazing knack of turning things upside on their heads.

He doesn’t need me to be strong, because He is strong.

He doesn’t need me to be capable, because He is able.

He doesn’t need me to have it all together, because He will hold me together.

He doesn’t need me to show the world that I can cope (and hey, I could post pictures of my kitchen if it would prove it to you). 

He wants me to show the world that He provides me with everything I need when I feel like I have nothing left to give, and that although I give up countless times, and prove myself unreliable, unwilling, unworthy and often rebellious in my attitude towards Him, He NEVER fails, NEVER runs out and NEVER gives up on me.

2 Corinthians 12v9 has been at the top of this blog for a while now: 
But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I could definitely boast about more weaknesses than the ones above. They are just a small part of a very long list, and one that started a long time before I was able to play the ‘sick child’ card to get me out of my responsibilities. I struggle with some things in life that seem to come so easily to other people, and consistently infuriate myself by repeating the same mistakes over and over and over again.

So it is only by God doing His thing and allowing His power to work through my inability, that He does the perfect thing at the perfect time through the most imperfect situations and imperfect subjects. The broken surface of my life somehow seems to give Him more angles to be able to reflect His light from.

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 2 Corinthians 4:7

If God was in the business of using the strong, I’d be outta here by now. But I’ve got a whole lot of weak, and if He’s willing to use that, I’m willing to continue giving up every day in order to know fully what it’s like to be daily picked back up and placed on my feet again.