2 Cor 12v9

Sunday, 30 December 2012

December


December hit like a ton of bricks. That first week, when we put up our tree, and started listening to Christmas music, was the hardest we’d found it since the summer. One bad day turned into a worse one, and then a worse one, until we felt like the whole thing had only just happened, and I wanted to choose to curl up into a ball and stay bitter. I couldn’t believe that we’d actually been functioning and walking around, making decisions and doing anything other than grieve for the last six months. But there was incredible comfort in knowing that we HAD been doing all those things for six months, so we rode the storm and waited for it to pass. And it did. After the first week, I woke up and stopped playing the “What would he be doing if he was here right now” mode continually in my head. I just dipped in and out of it occasionally, like I’ve done since we found our new normality. I stopped looking backwards and looked at what was in front of my face – the four wonderful children that are here enjoying the Christmas season right now. I stopped trying to force everything to be happy and Christmassy and worked out what some of the triggers were – Christmas music on repeat was one of them – and I calmed things down a bit. I set my standards really low, bought just one present for each member of the extended family (sorry, no friends this year), a handful each for the kids and Richard, sent about ten Christmas cards to people I wouldn’t see, and that was it. Simples.

Christmas was Scooby’s favourite time of the year, and he was really particular about having things a certain way. So I was really thankful that we got nine Christmasses with him, to enjoy these things that really stick in our minds to make great memories about him. When I think of him last year, I remember how completely and utterly happy he was, despite being able to do so little, and the look on his face when he received the Candyland board game, which he’d wanted for so long, as if he now had all he could ever want, and remember he was content just being a little boy at Christmas. Although we’ve racked our brains since, we can’t remember him identifying what he wanted to be when he grew up, or being desperate to get to the next stage of life (unlike his brothers, who are all desperate to turn twelve, purely because of the amount of new movies and games that will suddenly be available to them). And – the bit I found hardest to handle at the beginning – December last year was the last time we were ever together as a full family at home. On the 1st January, he was then in hospital every single day, till he went to heaven. So although December isn’t the month he died, it is an anniversary of another kind – the beginning of losing him, and I think that’s what made it difficult. But one of the many, many, MANY things God has taught me this year is that gratitude is the antidote to despair. So I am so completely grateful that we GOT last December together. All the months before it had been overtaken with hospital stays, yet in December, he didn’t spend a single night in hospital. Our home was overwhelmingly full with visits from the community nurses, occupational therapists and physios, and helpers from a local charity, but apart from a couple of hospital outpatient appointments, he was home the whole month, and able to take part in everything we did, from his bed, couch or wheelchair. This makes me so happy, and was the perfect gift that we, and he, could’ve had last year.

And so this year, with our bottom-of-the-pit week out of the way, we had a great Christmas. Rocky was so excited to be in his first school nativity, as part of the donkey percussion band, and practised all the songs very confidently at home. Of course, when the actual performance came, he just stood and gently swayed while mumbling the odd word and squinting at the stage lights, but by now I’m used to the anti-climax of the big day, so I was just pleased he enjoyed it. In our church nativity, for me, Ace was the highlight when he decided, as single mother Mary stepped on the stage without her husband (who’d been taken down with earache), to throw off the role of shepherd (which has a Jedi-like status to young boys) and become Joseph instead (previously denounced as a sissy role because you have to be married to a girl). He repeated all the lines whispered off-stage to him loudly, and took great joy in ushering each guest into the stable with a warm pat on the back, and a proud paternal gesture to the new baby. Turtle then had to hold up the shepherd’s role as a solo performance; Rocky took his role of donkey (he actually refused to be anything else, insisting that he’d been trained for the part) very seriously when he started to actually eat the hay from Jesus’ manger; and Baby was a very vocal (if in the wrong way at the wrong time) and beautiful angel. And of course, I’m also proud of my husband, who utilised his Gandalf costume to play the role of lead angel. Really. So proud.

 We stayed over at my parents’ house on Christmas Eve and had a fantastic Christmas Day, especially with my husband and my sister-in-law’s combined cooking expertise. We opened presents all throughout the day (instead of cramming the chaos into first thing in the morning) and the kids were all so excited with what they were given. My husband went way over our agreed budget for me, as usual, and I am now the proud owner of a sewing machine, as well as a lot of other nice pampery things.

My favourite day of the year was next, as we gathered on Boxing Day with my dad’s side of the family. We had a few less people this year, because of foreign travels and illness, but it was still amazing. As well as food and presents, we play games all together, and do the actual traditional sing-song thing. My brother gets on the piano, and we work through a variety of favourite carols and hymns, some straight and untampered with (eg Great is Thy Faithfulness) and some we can hardly sing through laughing (eg Go Tell it on the Mountain with a jungle reggae theme), but all loud and with four (and occasionally more) part harmonies.

This annual day for me is a great inspiration and leveller, as it reminds me of why family is so important – because those children who fight and whine and take a long time to grow into maturity will become adults, and hopefully best friends with each other too – and there will be moments like these in the future when you can look back and know that it was all worth it. The other thing it reminds me of is that so many people don’t have this – a place where they feel that they can truly belong, and be a part of something bigger and feel their significance in fulfilling a role that fits in amongst the other roles – and THIS is why we do church, to be that home, and to invite other people to it, and to see them be accepted, loved and part of something special.

So that was our Christmas! Hope you had a good one, and Happy New Year to you all xxxXxxx

Wednesday, 21 November 2012

Six Months




Six months since we last held you.

Six months since the long long battle ended.

Six months for you in eternity.

Six months for us in what feels like eternity.

Six months to regrow, reenvision our future, and pick up life again.

Six months to learn even more about the goodness and faithfulness of God.

Six months for you to know it in full.

Six months to realise that the things we thought we’d never do again were just difficult, not impossible.

Six months to watch your brothers and sister grow and change and develop and soak up the joy they bring.

Six months less to wait till we see you again.

Miss you boy x

Sunday, 28 October 2012

The One Where I Boast A Lot About My Children


As you know, we made the difficult decisions two months ago to go back and keep going with our pre-loss life. Same house, same ministry, same school. After a long away from them all, we didn’t know what to expect. We just had to hold on and see what happened.

 The boys have just broken up for the half term holiday, and so far their time back in Morecambe has been great. We came out of parents’ evening last week with glowing reports for all three boys, which has given us a massive boost.



 Turtle has gone back into school like he’s never been away, and is buzzing with the responsibility that comes from being in Year 6. He’s on the student council, he sets out the games and equipment at playtimes, and he’s also House Captain. After learning about World War II each week at school, he comes home and acts out the battles on paper and with his brothers. He’s collected quite a stash of books on the subject and went into great detail about the Anderson shelter they built in their year 6 classroom. His writing stamina has improved, and although he’s needing some extra help to catch up with maths, he’s improving all the time. He seems stronger in his convictions than ever, and is really thinking about his future.


Ace couldn’t have asked for a better teacher – she was with him when he was in reception class, so they understand each other really well, and we are seeing a very different reaction than last time he was in school permanently. Back in Year 2, he was coming home every day stressed, uncommunicative and worn out from all the concentrating he had to do; in the last few weeks we have seen very little of that at all. He is doing independent work much more frequently, and out of the eight weeks he’s been back, he’s won Star of the Week three times! He seems to be able to express himself far better than he used to, and although he is still impulsive, we’re seeing improvements in that area all the time. He loves teaching his two younger siblings how to do things, and is really good at naturally encouraging them to try new things.


And Rocky, who we had no idea how he would respond to school, has blown us all away. At the top of his report at parents’ evening, it just said, “Wow!” Speech has always been difficult for him – his vocabulary was okay, but he struggled to pronounce so many consonants that very few people could understand him. He has suddenly learnt nearly every letter he needs (just ‘k’ and ‘g’ to go!) and his confidence has grown hugely with it. He is in the top portion of the class for numeracy and literacy, and making friends really quickly. It seems there’s been a lot more going on in his quick brain than his cheeky exterior wants us to think! He turned five this week, so as well as being to talk much better, and growing tall enough to reach the light switches, he's feeling very grown up all of a sudden. 


So although things are far from perfect – we are still working towards finding some sort of rhythm to make life work and get our household in order – things are far better than expected. To watch each of the kids grow more and more in different areas, and know that taking our year off from real life seems to have been the best decision we could’ve made, has given us all confidence for the way forward. 

Monday, 1 October 2012

Confessions of a Pro


Here's some stuff that you think I'd have worked out by now. I'm not sure if it's reassuring to other, newer parents, or just scares them about their own future, but today I felt the need to confess that after ten and half years of parenting five very different children, I have never managed to work out....

...how to cook a meal (I could actually just put a fullstop there, but I’ll carry on...) without having a small person hanging on me or crying at me or destroying something that they shouldn’t have been playing with that I sacrificed to them for the sake of a few moments of quiet.

...how to tidy up properly while the kids are in the house without getting REALLY stressed out at them or using the TV to make them zone out while I work around them. I usually settle for untidy-but-nice-to-be-with mummy over grumpy-but-tidy mummy, and as a result we live in happy chaos.

...how to remember everything we need every time we go out. I feel like I bring a kitchen sink with me wherever I go, but I inevitably forget the obvious things like tissues, or a change of clothes for a toilet-training child, or drinks on a hot day, or coats on a rainy day, or cash for a place that doesn’t take cards.

...how to get anywhere on time AND clear up behind us on the way out. It can only be one or the other.

...who sat in which seat in the car last time we went somewhere and whose turn it is to sit in the front/middle/back this time. If I cared about it as passionately as the kids do, I’d make a laminated rota to make all our lives simpler. But I just don’t.

...remembering to really actually check the appearance of every child before we arrive at our destination. I’m usually so happy to have got them all where we are going that only as we enter the door do I realise that someone has jam on his face, someone else has yesterday’s dirty t-shirt on again, another has shoes on the wrong feet, and the toddler has no shoes on at all due to the quickfire motion I used to wrestle her into the car after she tried to escape from the house in the wrong direction.

...how to say no to a child who wants to be read to.

Monday, 24 September 2012

Guilt vs Truth


Last weekend (Ace’s birthday) was great. Everyone had a fab time, and the birthday boy himself was brilliant. There are times when you get flashes of just how far your kids have come, that can be easily missed in the every day plod of forming your kids’ characters, and it makes you so proud. For Ace, who has always had issues with impulsiveness – not using thoughts and words before actions – it was so sweet to see him taking time to open cards and thank people before he even opened each present, with no prompting from us at all. He was really keen on getting everyone involved in the activities rather than just making it all about him, and he was so grateful for every contribution to his day.

On Sunday we were at church and in the middle of worship I thought about how well the weekend was going and how thankful I was, when I suddenly got blindsided by old memories and a horrible feeling of guilt. 

Usually as a mum, on your kids’ birthdays you allow yourself to have a little reminisce  about the day your child was born, but I rarely did when it came to Scooby and Ace’s birthdays because I didn’t enjoy it all. Not that excruciating pain, blood and the most undignified actions of my life is fun to think about on the others’ birthdays, it’s just that the other three births were followed by a relief that the worst was over and overwhelming joy at the prize at the end of it. For the twins’ birth, however, there wasn’t much pain involved as I had to have an epidural, and once they arrived the overwhelming feeling was more akin to panic that there really were two of them and now I was expected to take responsibility for them both at the same time. Due to lots of blood loss, I felt out of it and I was having out-of-body type experiences off and on for the rest of the day, so it’s all hazy in my memories. Once we were up on the ward, the two boys were only with me for about an hour before the nurse noticed that Scooby was grunting slightly, and wasn’t feeding at all, and he was taken to the neo-natal unit for tests.

This is where the guilt factor comes in. I was weak, hardly able to sit up, with another baby to look after, and Scooby stayed on the neo-natal unit for five days. I couldn’t get up there myself as I needed to be wheeled up, and the ward was so busy and understaffed that the nurses couldn’t take me. So I had to wait until Richard came to visit, for him to take me. So my brand-new baby only got cuddles from me twice a day for his first few days. Once I could start walking again, around day four, I then had to try and work out when I could go up on my own, between sleeping, looking after Ace, and producing milk to be taken up to Scooby for his nose tube. Every time I managed to go up to cuddle him, I would come back to a hysterical second twin who had woken up while I was gone and bawled his eyes out for who-knows-how-long?

At the end of the fifth day, Ace and I were officially discharged, and we then moved onto the tiny parents’ bay on the neo-natal unit, where finally I could be together with both my babies. Determined to get them both home (my feelings of panic had turned into resolve!) I persisted with feeding Scooby as often as I possibly could, day and night, so I could get his sucking reflex working and get that nose tube out of his stomach. All his tests came back fine, the grunting had cleared up, and once his course of antibiotics had finished on the eighth day, we were able to all go home and be an exhausted, chaotic family of five.

But those first few days continued to bug me for a long while after. I knew he was only on the lowest level of care on the neo-natal unit, and so probably had plenty of time outside of his little pyrex box, being cuddled by the lovely nurses on there, but it wasn’t me, the body he’d just come from, that he was getting his cuddles from. I felt like I’d been forced to choose between a baby with higher needs who had lots of people to look after him, and a baby who was physically fine but was completely dependant on me as no one else was there for him.

I hadn’t thought of this stuff for a really long time, but it all just flashed into my mind at that moment on Sunday morning. It hit me hard and unexpectedly, and I felt overwhelmed with grief and regret.



Attacked in the middle of worship. It’s an old, old story.



I know that my God is the God of turn around, so I gave it over and waited to see what He would do with it. And back it came.

First of all, never mind about what happened in the beginning. Never mind about what it is out of your control. Never mind about what you ended up having to do in the midst of a bad situation. Even if wrong decisions were made, the past is the past. Forget what is behind and fix your eyes on what was ahead. Didn’t you more than make up for those first five days? That kid was never EVER in doubt that he was loved, wanted and, for a long time, the centre of the family around which everyone else revolved. He knew how much everyone loved him, and how everyone did as much as they could, without complaint, to try and bring him health and happiness. You got hours and hours and hours alone with him, telling him and showing him how important he was. And the cuddles? Oh yes, more than you ever thought. You two were by his side the whole time, right to the end.

And where is he now? In the BEST place. With the BEST care, and without a single need at all. Better arms than the neonatal unit, I can promise you. So you just focus on the ones I’ve left in your care, including that twin brother of his. Don’t worry about your boy anymore – his past or his future. Your job is done, you’ve seen him safely home.

It’s all good.


Restored, refocused and equipped to fight again. It's an older, better story.

Saturday, 15 September 2012

My Birthday Boys

This weekend is a new first. On Sunday, one of our twin boys will turn nine, while the other twin brother will forever remain an eight year old. It’s such a weird concept, I can’t even work out what to think about it. The nearly-nine-year-old in question thankfully doesn’t seem to be hampered by this troubling concept – he’s been planning his ninth birthday for months. It’s even weird for us to be actually planning out what we’re doing for one of the kids’ birthdays. We haven’t done that since Rocky was two and we spent the day at Legoland the day after a friends’ wedding in Luton. Since then every kid’s birthday has been dominated by hospital activities – several have actually been celebrated in hospital, which ended up being some of the best ones thanks to the generous nature of NHS staff who are willing to put up decorations, sneak in cakes and give presents – even when it’s the patient’s sibling’s birthday rather than the patient himself!

So we are going to use the house in Preston we stayed in over the summer on Saturday, as Ace wants a treasure hunt and a Nerf gun war, and other things that will work well there. He’s written a specific list of things he wants, some that he’s definitely not getting (pet lizard/pet frog/his own iPad, etc), and others that he’s stated that he HAS to get otherwise it will be the worst day ever. Hmm.


Last year’s birthday wasn’t so great. We managed our usual tradition of a McDonald’s breakfast, but after that Scooby struggled for the rest of the day with seizures. We should really have taken him into hospital, but he was on weekend release and desperate to stay at home. Plus our friend Steve (from the aforementioned wedding) was staying over with his family and Scooby didn’t want to miss them. Ace had an amazing day, as our attention was so taken with his brother, because we let him play computer games nearly all day, which is complete heaven for a newly-eight year old boy. He thought it was the best birthday ever! We managed to keep Scooby at home, though we had to medicate him and put him to bed very early. The next day was when we took the kids for a walk along the prom and Scooby had an absence seizure in his wheelchair and seemed to stop breathing. Richard had to perform mouth-to-mouth on the prom and eventually an ambulance came and took him back into hospital, where he stayed for several weeks. After that, we had very little time at home with him.

So their last birthday isn’t one I like thinking about, but I love remembering their birthday before that. Although their actual seventh birthday was spent in Manchester hospital, that weekend Scooby was out and so we took them all to the Lego Discovery Centre in Manchester. We bought them a few presents each, but also gave them some money to spend when they were there. They ended up with a few more gifts of money from family members, and suddenly these two seven year olds had fifty pounds each. We don’t give them actual pocket money at home (we use a points system where they save up for what they want and then I usually order it online) so to have that amount of money at their disposal, which they’d never seen before, was hilarious. We watched with interest to see what they would do.

As soon as we were out of the play area and the gift shop, Ace immediately identified which Lego sets he wanted and asked us how much they each were. This kid, who pretends to hate maths at school but is secretly really good at it, turned into a human calculator as he rearranged boxes in front of him, putting them together in groups, weighing up which ones he would have to reject in order to get the most from his money. Within ten minutes, his decision was made and three sets had been purchased.

Scooby, on the other hand, agonised over what to spend his money on. He looked at nearly every Lego box in the shop, settling only on an activity book. He was so relieved when we told him there were other shops in the Trafford Centre and he didn’t have to buy Lego! We hadn’t realised how much he only played with it to join in with the others until then. The book was bought, leaving him £47.50, and then we went round umpteen toy shops in the rest of the centre. He picked things up and put them down, and said maybe he would save his money and spend it another day, but we reminded him that we very rarely took them to the shops (four boys, a baby and shops don’t mix well at all) so we should look a bit longer. Then I thought of my favourite shop – WHSmith. We went in there and Scooby’s eyes lit up. He went up and down the bookshelves and stationary aisles, pouring over every offer.

“Ooo, one pound for crayons!” he said.

“No, it says one pound off,” I told him. “See, the sticker says £2.99.”

“No, that’s too expensive to pay for crayons,” he said, moving on and leaving us to wonder how on earth he knew what was too expensive to pay for crayons!

He sniffed out every bargain he could find – a Where’s Wally? collection that was cheaper than buying them separately, DVDs that were half price, and – his favourite find – a board game that was half price just because it had been opened and the pencil was missing. We had to convince him to buy another board game that he really wanted but wasn’t on offer, reminding him he was allowed to buy things at full price too! When he finally left the shop,with his carrier bags stashed full, Richard and I were howling with laughter at the difference between our twin boys.

Not only had they never been taught how to shop or spread their money so well, but we were blown away by their similarities to us. Ace shopped exactly like Richard did, with no hesitation, getting exactly what he wanted immediately, with no desire to change it even after seeing everything else in the shops; Scooby did exactly what I always did, agonising over every decision, wondering how to make the money go as far as it possibly could and almost refusing to buy things at full price.

It's one of my favourite days with them ever, and one of the many ways that kids constantly help us to understand our character, by reflecting it back to us. 

Hoping that this weekend will produce more happy memories and character building for all of us!


Wednesday, 12 September 2012

Start

We've done it. We've moved back in, with some rooms beautifully decorated and so lovely to be in, and others still full of boxes and bags that need sorting out. Sometimes it feels wonderful that we've done it, and other times I wonder what the heck we're doing.

We successfully got three boys to school last week. I am so glad I am able to take three boys where three boys used to be, even if one of the boys is different. I'm glad that in the busyness of trying to remember an old routine, and buying new things to take and wear, and worrying about a four year old who doesn't often settle in new places, that there isn't much time to wallow in memories of a boy who loved school so much and was last there fourteen months ago, running and playing with his friends. Busyness is a wonderful companion to grief.

Rocky was fine. He saw the computer screens and went straight in, only temporarily annoyed that he wasn't going to be with his brothers all day, and reported when he came home that apart from eating his lunch, he did nothing all morning. Funny, that's what they all used to do in KS1 - "nothing", along with an occasional bit of "I can't remember".

Ace has been doing really well - apparently he watches the clock for most of the afternoon, counting down till home time, but for a kid who doesn't do sitting still, concentrating or written work very well, I'm really proud of him. He's trying hard, and got 'Star of the Week' last week.

Turtle came out on the first day telling me that he was House Captain and Year 6 representative on the school council. "Um, how many hours have you been back, son?" was my response. He also got 'Star of the Week' for his class, and is charging at every challenge that comes along in a way I've never seen him do before.

I know we have a long term ahead, and no doubt the work will get harder and their initial enthusiasm will wear off, but I am breathing a BIG sigh of relief that there is no doubt that taking last year off school was the best decision for all of us. I think they've grown in confidence and character despite (perhaps because of?) everything that has happened, and their approach to life is so different since they were last at school.

And now my head is all in a tizz again as, having crossed that huge milestone, Turtle then casually hands me the paperwork entitled 'Secondary School Admissions' and I realise we have only a few weeks to make another monumental decision about our children's future - yikes!!

Sunday, 26 August 2012

Moving

This week we take a huge step as a family, and we move back into our decluttered, partly redecorated home. 

Since April, when we received the terrible MRI result for Scooby, we have been staying at my Auntie's property, in order to be nearer to the hospital and family and friends. After we lost him, we had no idea whether we would be able to move back again and pick up our responsibilities as church leaders. We were broken, burnt out and unable to make major decisions because we knew everything was being driven by our emotions. 

Thanks to the amazing generosity of our family members, we didn't have to decide. We were able to stay in this incredible haven in the countryside for as long as we needed to, and the kids have had a blast. Unbelievably, it has been one of the most incredible times of our lives, as we have been blessed with holidays, wide open spaces to play in, babysitters and people who have showered on us just the right amount of love and support that we have needed.

We kept going every week to Morecambe to sort out the house while we were making our decisions, and went through every square inch, sorting and tidying. Since July 2009, when my difficult pregnancy with Baby started, we have lived in chaos, firstly because I was bed-bound for so much of the pregnancy, and then because the appearance of Scooby's illness came just before Baby was born, and our lives became dominated by hospital time and trying to hold ourselves together as a family. As we swapped rooms around as Baby grew and Scooby needed more hospital equipment, stuff just got piled up instead of properly sorted, so it has felt so good to be able to finally tackle mess that has been there for far too long. 

It's also been a really important cathartic experience, going through every item in the house and assessing its need and the memories attached to it. Some things have had much less impact on me than I expected them to; others have dragged emotions out that definitely needed to be brought to the surface. I'm so glad that my uncontrollable reaction, that came when I realised I would never again be able to bundle him up in his gloves and hat in his wheelchair again, happened on my own in the house, and not one morning next winter when we pulled out the hats and scarves in front of the other kids for the first time. Memories have been boxed, some close at hand for when we want them, others in the loft so we can assess in the future how much is helpful to hold onto and what isn't. At the moment, he is still so real in our minds that it seems strange even talking about him as just a memory, but we know in the future we may need help to make the memories seem fresh again.

We have rearranged rooms and brought in the new furniture that The Cherish Foundation gave us, and redecorated several rooms to make everything seem new and fresh. There are still rooms to do, but lots of progress has been made, and while we decide whether we sell the house or stay, it makes it easier to carry on with life there for now.

This summer has also given us time to rearrange our approach on life again. The agoraphobic-type feelings that were there in the beginning, at suddenly have choices and not being tied to hospital, have begun to wear off. I've started building things into my life again that seem like luxuries - ironing clothes, clothes shopping and cleaning my own floors. I've gone from being afraid to be in front of people because I couldn't get a grip on my emotions, to speaking at church. I can sometimes talk about loosing our boy without crying. I still feel like there's a long way to go. I can't remember how to plan out things in advance for the week and then make it all happen, instead of just reacting to whatever's under my nose. My short-term memory is still shocking. Thoughts fall out of my brain in less than a second and I find myself wandering from room to room not knowing what I was doing five minutes ago. My vocabulary is all over the place, and I keep getting stuck mid-sentence because I can't remember basic nouns like 'plate' or 'wipes'. The kids have got used to finishing my sentences for me while I gesture wildly at the thing I'm trying to say, but I definitely lose the authoritative edge with conversations like, "Ace! No, not you, I mean Rocky! You left your...thing...out and now it's....(pointing at the sky)" "Do you mean he's left his bike out in the rain, Mum?" "Yes! Thank you! Now sort out the thing that he just said!"

In order to build stability and rhythm back into our lives, we have decided that the boys should go back to school - or go for the first time, in Rocky's case. We will miss homeschooling - it brought the right amount of flexibility and focus for the difficult time we found ourselves in - but now life is so different, and the school is such a great one, we know it's the right thing to do for now.

And really unexpectedly, God started stirring up our hearts about church again too. I haven't written much about our church on this blog, because church is people and obviously it wouldn't be great to write about the details of other people's lives on here, but at the beginning of summer we really didn't think we could carry on leading our small church. We planted it five years ago, but through the ups and downs we've had as a family, it has struggled to flourish. We have an amazing team of core people who have held us up through it all, and picked up the many many things we have thrown at them every time we found ourselves in the midst of another crisis, but we haven't grown much as a result of being in maintenance mode for so long. Our fear was that these committed and talented people were using up all their time and skills in a place that wasn't being effective when they could've been thriving in another church where the leaders were available and able to take them forward. We wondered whether their families and our own would be burnt out trying to fulfil a vision that might not be for the right time and place, and if we moved away from our support network again, whether we would be strong enough to lead other people. But just as we had decided to give up, God began whispering. Through the people we have met, and places we have been this summer, a new passion for church has been rising in us. We really have seen how the Body of Christ can be effective at connecting people to God and strengthening the weak and the vulnerable first hand, and so we are returning to Home Church, re-envisioned and ready to see what God wants to do with His church there. We are completely open-handed about the future, about whether the church grows or we let it go. 

So this is where our summer of grieving and healing and weighing up the future has brought us to; to move back into our house (for now), to get the kids back into school (for now), and to continue to lead Home Church (for now). Please pray for this next stage - we know there is more grieving and healing to come, and probably lots of doubts about our decisions - but we are trying to keep our eyes fixed on the One who holds it all in His hands.

Wednesday, 15 August 2012

Fireworks and Headbanging: A Repost


I haven't reposted in a while, so here's an insight from 2008 (when Rocky was Baby, Scooby and Ace were five, Turtle was six, and Baby was just a gleam in her father's eye). 

Tuesday 4th November 2008
Tonight we went to a fantastic firework display. It was up the road at Heysham Free Methodist Church (who apparently, according to the local free paper, who wrote a lovely but glaringly incorrect piece about our new church, we are a faction of) and was executed by a semi-professional pyrotechnic, so well-worth seeing. Baby, who was only ten days old last time we went to a firework party, was awed by the sight of so many pretty sparkles, owing to his obsession with overhead lights (he likes to switch them on and smile, then off and frown, on and smile, etc, and I'm just hoping it doesn't lead to some uncontrollable form of OCD when he gets older).
In addition to the display, there was hot food, a tuck shop, a drama presentation and crafts, led by a lovely lady who didn't bat an eyelid when Turtle asked if he could use the resources to make a light sabre instead of a rocket, and handed him several sparkly pipe cleaners to entwine together.
The boys filled themselves on burgers and hot chocolate and we caught up with a few old faces. It's always an interesting experience being in the Free Methodist churches, because my family have been involved in them for years, and Richard's dad was a minister at a couple of them, so lots of people know who we are even if we don't know them. I have many a lovely conversation with people whose faces I recognise but whose names are a mystery, who ask me how my grandma/dad/father-in-law/little brother is, and I have to reply in the vaguest of terms because I don't know what their relationship to the aforementioned relative is, and how much detail they really want to hear. I even met a guy who said that the last time he had seen me was when I only had two children and was pregnant with my third. I was very tempted to ask him if that meant he was one of the many midwives, student nurses or paediatricians who had entered the room in the twenty-three minutes while I had my legs in stirrups trying not to push and waiting for the mobile scanning unit to confirm whether the second twin had turned to be head down, but I restrained myself instead and told him he must be mistaken.
Anyway, after a very smooth, fun-filled night, something had to go belly-up and at the moment we were about to leave, Richard realised he couldn't find his keys. He had met us in the car park when we arrived because he'd come straight from work, and helped me to get the kids in. So we, and many willing volunteers (who were the last ones left and waiting to close up the church and go home), traced his path from the car to the church, from the church to the field where we had stood watching fireworks, back to the church, around every room in the building, and back again. The boys were very good in the meantime, even Baby who must have been wondering what happened to his bed time. The older three hovered in and out of the entrance, staying in sight, and just at the moment I turned around to tell them not to run on the patio, there was a stumble and a fall and a face hit the paving stones.
I ran to Ace as fast as I could, thinking he had grazed his palms, but no, his hands hadn't even touched the floor. Instead, he'd caught it with his head. As I rolled him over, waiting for him to let out the cry he was sucking air in for, I literally saw the bump, Wiley-Cayote-style, raise up from his head and turn greyish-blue. I picked him up and ran back in.

The crowd who were anxiously fretting over the lost keys, were now raised to a new frenzy of mild panic as we walked past people and their eyes widened in horror. The kitchen ladies produced a cold wet tea towel and an ice pack as if by magic and one rushed to get her car to take us to A&E. Everytime I peered back under the ice pack, the bump seemed to have expanded, until half his forehead was pushing out forward and his eye had changed shape a bit. Thankfully, Richard reappeared with the lost keys, and was able to take Ace to casualty in the van, while I took care of the other three, leaving the concerned onlookers free to go home and be contacted a couple of hours later to be told he was given the all clear by the doctor and sent home again.
In fact, when he got home later, he was able to give me a clear description of what the doctor said ('Oh dear, what a big bump!') and of the different toys he played with in the waiting room. His only concern was when I showed him his head in the mirror and he held his finger to the bump and said 'Mummy, I want it bigger and bigger and bigger!' I think he watches too much Tom and Jerry.
Oh, and the location of Richard's keys? Well, it would be far too embarrassing for him if I told you that after a twenty minute search, he suddenly remembered that when he had helped get the children out of the car at the beginning of the night, he had swapped his jacket, so I won't say a word.

Monday, 23 July 2012

The Fight


There has been many times since losing Scooby that I have been angry. Not at a person, not at God, not at myself – just angry at the whole darned situation.

If I’m completely honest, life with Scooby has never been easy. Fun and extremely rewarding, yes, but not easy. We had raised him through his baby years, and through a crazy toddlerhood, with epic tantrums and noise and chaos that only three small boys together could generate in such a huge amount. It was tough, exhausting, fun and definitely not picture-perfect. We had seen him develop into a sweet natured, still highly excitable school boy and thought that the most difficult part was over. We had no idea how much harder it was going to be.

We fought and we fought hard. For a really REALLY long time. We put everything we had into keeping that kid. We turned our lives upside down, we stayed with him every step of the way, we administered every difficult medical action we had to, helped him through more epic tantrums as the medication took him on emotional rollercoasters, and we were prepared to move house, give up our careers and care for him night and day to get him better. We went through so much and we had to witness so many things a parent should never have to see their child go through.

The doctors fought hard. From the first week he was transferred to Manchester, they devoted time, energy and medical resources into diagnosing and treating him. They consulted with other experts around the world, they took his details to conventions to discuss him as a case study, they stayed up late researching and having conference calls with consultants in other countries. They sent us down to Great Ormond Street. They celebrated our victories and shared our tears. They didn’t deserve to have all their efforts end in defeat.

Our family and friends fought hard. They spread the word and gathered people to pray. They did research on our behalf. They looked after our other children and brought so much joy and sunshine to them that during all this, they’ve experienced some of the best times of their lives. They paid for cleaners, for hospital coffee and meals out for us. They called on their friends and total strangers to join in with our story, and set Facebook, Twitter and church prayer slots all over the world alight with the name of Scooby Scholes.

We did everything right. We did everything we could. In the end, all we could do was hold him, and then let go.

There have been times I wanted to scream and stomp my feet and break everything around me as I yell ‘IT’S NOT FAIR!!!!’ at the universe. I don’t understand how it came to this. The doctors don’t understand how it came to this. Our friends and family don’t understand how it came to this.

We did everything we could. There’s not a single thing we could’ve done better or different.




And there comes the perfect peace.




There is NO moment in Scooby’s life that we look back on and say ‘If only....’

'If only we had noticed his symptoms earlier...'
'If only we had been watching him...'
'If only we hadn’t left him for that moment...'
'If only we’d spent more time with him when he was younger...'

We do not carry the agony of ‘If only...’ that so many other people do after they’ve lost a loved one.

We were given the chance to fight long, and fight hard. We fought to bring out the best in him as a toddler and to conquer his self-destructive side. We fought hard to make sure he was happy and secure and loved and knew the God who loves him. We fought to keep him alive, and so did every person around us. From the first symptom to the end, we were given the best doctors, the best family, the best friends around us. We got to be by his side every step of the way. We tried every treatment possible, even to replacing his whole immune system. We did everything we could, letting no chance pass us by. We took every opportunity for his friends and family to visit him and cuddle him, there were no words left unsaid, we had every opportunity to tell him how much he was loved, we were able to ask and grant forgiveness for past faults, we were able to tell him about the beautiful place he was going to, and were able to hold him safely all the way until the end. No regrets.

How completely and utterly blessed we are.




From ashes to beauty, from despair to praise, from anger to overflowing with thankfulness.

Isn’t this just the way our God works?

Monday, 9 July 2012

Sprint to the Line

A friend wrote this and put this in my hands a few weeks ago and when I plucked up the nerve to read it, it completely took my breath away. I'm no poetry expert, and I know I'm biased, but in my humble opinion this should be studied in school, Wilfred Owen style, for the way he has managed to mix glory and grief, triumph and tragedy, in such an articulate and accurate way. He has documented our feelings and God's promises better than I ever could.

THIS is the reason we hold all the tighter to our God, and will never quit the race, even if we have to crawl it for a while.


Sprint to the Line

Young brother
grab your gold with an embrace and “well done”
race won, course run
as we struggle on, ragged breath gasp quick with grief
our chests tight and knees weak
in your absence

The story of the crown awaits
Overcomer
eternal laurel alive even as grave wreathes fail and fade

This stopped clock leaves us horror slack as disaster witnesses
a date to divide time for those left behind
This record one we wish not yours, nor another’s
as mute reflection our only response to our overwhelming
and our course stretches all the longer
without you
This medal will weigh our steps with every new hill as a memory never shared, our marathon so long

So take your podium
raised son
Joy boundless guarding you from our grief as your tears are dried, even as ours flow for your snatched moments
precious as counted and found coins for their brevity

We run weak limbed, stumbling to be where you are
to run worthy with ragged knees as you stand
glorious, vigorous and in timeless prime
missed one

We run
with open mouths, our bleeding hearts committed to The One
Who will hold, humble and honour us
too soon, but not soon enough
in victory united by His hand

Anthony Rei, June 2012



Thursday, 5 July 2012

Rock

Logically we're doing great. We are being so blessed by people around us, and our four kids here are happy and healthy. We brought bikes home from the cellar in Morecambe that we have only used twice and the boys have been riding them round the back of the house. Rocky is hooked - he rides first thing in the morning, in the rain and the bits in between, and sneaks down after he's got his pyjamas on at night for one more turn.  


 Ace is excited because he's worked out he only needs ten more points (our pocket money substitute) to get the Lego set he wants, and is offering to do jobs all over the place so he can earn them. He even offered to make a big mess so he could get points for tidying it up.  


 Baby had fun today using rocks to draw pictures, but as they were on the side of my uncle's Landrover, none of the adults thought this was fun, and she spent the rest of the day inside. 


 Turtle heard me singing about a Cornerstone from a new album and asked me what it meant and I explained it was the rock which was placed first in a building. Everything else is then placed  on and around it and finds its place according to the measurements the cornerstone has set. It is the foundation.


 I fudged through the day, put the delivered shopping away, held back the tears while I engaged in conversation with people, made cups of tea without boiling the water first, emailed the library to ask them to cancel Scooby's membership, sobbed for ten minutes afterwards at the thought of never choosing and reading books with him again, was grateful for a husband who can cook so we didn't have to eat burnt food like I made the night before, went to bed at the same time as the kids, and woke up later so that Richard and I could bawl and sob before trying to go back to sleep.


 At 1am I went for a walk outside, down to the brook bridge which is just a few yards from the beautiful place in the country we're staying at right now. It was pitch black and I didn't see another person while I did it. I could only see the road and the trees and bushes around it. Everything was wet, like it had just rained, but I wasn't getting wet. Then I walked directly under the trees and heard the sound of hundreds of drips in the leaves. As I came out from under the trees I expected that it had started raining, but I still wasn't getting wet. 


 Only when I got the brook bridge did I understand. I shone the light from my phone to try and see how deep the water was and in front of the light there were thousands of tiny swirling water particles. Mist. 


 I looked up and realised that the reason it was pitch black is that was not a single light in the sky. There was the outline of the trees and then great big nothing behind. If I was an ancient mariner or a desert wanderer from long ago, there would be absolutely nothing up there to give me a hint of where I was, or where I should go. There were no markers, no guidance, no clue where to go next. Nothing. Just big hazy black damp darkness that stretched on and on.


 But I wasn't a lost traveller - for me there was something more. Not sand or waves beneath my feet. There was solid ground. And the knowledge of the way home. And if I turned and walked on it, in the direction I knew, it would get me home. 


 And it did.

Tuesday, 3 July 2012

Monday, 25 June 2012

Blessings and Pain

Thankyou so much to all of you who are still praying, thinking of us lots, and sending messages to remind us of this. We are currently away from home, having our socks blessed off by many wonderful people - family, friends and complete strangers - who have provided many places for us to stay and opportunities for us to experience while we take time out of everything and regroup together as family. We have been in Bradford, Central Scotland, North Wales, Hereford and now Somerset, all of which has included: visiting a castle, farms, a Bronze Age roundhouse, the beach and more; sleeping in a tipi; two of the boys learning how to swim; a treasure hunt; and winning an award at a conference which means we have new furniture and a home makeover!

Most of the time we haven't had internet or phone signal, so our communication with the outside world has been hazy (this is my apology for all the messages I haven't yet replied to...), but also helpful as we concentrate on being together. Obviously with all the above, there have been many wonder-filled and exciting moments, something we could never have imagined a few short weeks ago. 

We have also had many days where grief has been completely overwhelming and we haven't been able to communicate without tears because we miss him so much. It still seems unbelievable that the thing we fought so long and hard to prevent has actually happened, and that he is no longer part of our physical family unit experiencing life on this earth - that we use the words 'memories', 'death' and 'grave' when we talk about our eight-year-old son. The waves of grief come hard and strong and without prediction, reducing us to wrecks just a few minutes after everything seemed okay. But they are waves, and they do pass. Sometimes it takes a few moments, other times about three days. At this stage, we are in no hurry to rush them, because we know that they are part of what we have to go through, and they are reminders of the depth of our love for him. I do understand why some people who go through loss just stop living the rest of their lives and camp around the past, Miss-Haversham-style, setting up shrines to their loved ones and talking to them constantly as though they were still there. There are moments I want to do that. But I also understand why some people put their grief and their memories in a box, get rid of every reminder, and move away from anything that resembles their old life in order to try and shut out and control the grief. There are times I want to do that too, because I tell myself that if I don't think about it, it won't hurt.

I have no idea how we continue to balance between those two extremes for the rest of our lives, but I know it's something we will have to do. We have so much to live for and so much to be grateful for, both in the past and the present. We would give anything for this to be different - to be spending this summer turning our lives upside down, moving to a wheelchair-accessible house and spending every waking hour caring for the extensive needs of our rehabilitating child, without holidays and sunshine and going out together as a family - if it meant we could still have him. But it isn't different. So while we will continue to have moments, days or weeks where we cry out with everything in us because we cannot believe he is gone and the pain is too much to cope with, we will also have moments, days and weeks where we will soak up our new-found time together and these incredible experiences people are blessing us with, and let gratitude for the past and the present overwhelm us too.

Sunday, 3 June 2012

Days

Some days are manageable – in fact, some days have really surprised me at how much joy there is in them. It helps so much that at the moment we are living in a beautiful place with lots of family around. There have been days full of sunshine, friends, barbeques, swimming, walking and laughing so hard there have been tears. These are the moments when I think the cheesy thought: ‘This is what Scooby would’ve wanted. He wouldn’t want us all to be sat here moping about him when he’s having the best time ever.’
There are other days when the ache won’t go and little tiny things that by-pass everyone else make me think of moments with him that I’ll never have again. Too many memories are surrounded by hospital visits, and other times that are clouded by just how difficult the last two and a half years have been. In my weakest moments, I feel so much self-pity not just that we lost him, but that we had to go through too darned much in the time leading up to losing him. I wonder if every single happy event in the future will be overshadowed by the lack of his presence. In these moments, although I do let myself cry when I need to cry, I also need to give myself the ‘It’s no use wishing things were different, because they’re not’ speech. I remind myself that the time for fighting to keep him is over. I tell myself it’s no use in doing the whole ‘What would he be doing if he were here now?’ thing, because there are too many scenarios to choose from – the ‘what if he’d never been ill?’ one, the ‘what if the brain disease had been stopped and he was on his way to recovery now?’ one, the ‘what if the final deterioration hadn’t been so fast and we’d managed to bring him home for a bit?’ one, etc etc. There were so many different stages to his illness that ‘what would he be doing now?’ is an unanswerable one anyway. Occasionally it makes us smile as we imagine his reaction to a certain thing, but most of the time it’s not a fun game to play.
There is one overriding thought that brings me back to a place of peace though, and that is Psalm 139:16. Growing up, I’d always wanted four children, and so when we found out we were expecting a fifth, I joked that Baby was our ‘bonus child’. That’s how I thought of her. But since losing Scooby, I’ve begun to realise that maybe he was our ‘bonus child’. Because the verse says, ‘Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.’ Even after so long an illness, we are still in disbelief that Scooby has actually died and we will never see him here again. But it is no surprise to God. He knew all along exactly how many days Scooby would have on this earth, despite his induced early birth and the medical treatment that kept him going for so long at the end. It was three thousand, one hundred and seventy. God had them all in His book. We could have gone through life never having known Scooby, but instead God gave him to us for 3170 days. When I think of this, it reminds me not to be overwhelmed with sadness, or to try and work out what he would’ve done if he was here today, because he was never designed to be here today. It wasn’t in the book. His time was perfectly set out by a perfect heavenly Father, who knows far better than us, despite the many times I want to tell Him otherwise.
That is why, between the moments of heaviness and disbelief, I also have moments of extreme joy, because God could’ve picked anyone to look after Scooby for his 3170 earthly days, and it was us He chose. Wow.

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.