no one told me that

‘how far back does our online diary go?’, ‘when did we start using it?’, ‘I don’t know!’ – ‘well what is it you’re trying to remember?’, ‘I need dates for these assessments (showing a scribbled list) – I’ve narrowed it down to 2012, but it could be 2011??’….

When the kids were born, we had the little red books with spaces for all the milestones & vaccinations, weights & heights, no one told me I might need a set of box files kept neatly to hand in chronological order. No one told me it would be useful to hang on to letters about dates & times of appointments, or e-mails, or phone calls. So here I am trying to piece together a timeline from the scattered information I have kept. Its making me feel drained just looking over it all, so that I can fill in the new forms in front of me this week!

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No one told me, because no one knew that for us family life would involve all this. It’s just kind of evolved that way.

It all began really with an overwhelming feeling of helplessness that I just couldn’t get breastfeeding right, I just somehow wasn’t relaxed enough, or producing enough milk, or not holding her in the right way?? It just wasn’t working, and I couldn’t meet my little girl’s vital needs. The midwife had to keep coming round, she advised us through the transition to bottle feeding, we tried different bottles, different teats, tried demand feeding, tried to the clock… to no avail. Feeding was a battle. And our little bundle was a bundle of stress and sleeplessness – no surprise we thought, she’s always hungry bless her. Health visitors checked in regularly, at one point I took her to the doctors nearly once a week asking and asking why she was struggling – or why I was struggling… to no avail.

Weaning proved equally tricky, she was obviously scared of food, scared of the feeling of it, and swallowing it. She walked early and I can remember following her around with a yogurt trying just to get a spoonful in every now & then while she played – just something each day. I read everything I could find, tried every idea I could think of – picnics in indoor tents, tiny pieces of colourful food in ice cube trays, food pictures, playing with food, eating altogether, eating alone, sitting with me, following her around on the go, food treasure hunts. But we were at the bottom of a very long uphill battle.

When A came along the difference was so stark, the first time he was offered food on a spoon I had to hold tight before he swallowed spoon & all!! But B was still obsessively picky, and resistant to food. I remember asking for help as always, from the health visitor at A’s 2 yr check. We were sitting in our new house, Andrew’s first post following curacy, in the sitting room and I so clearly remember her words and the deep pain that followed. ‘If you keep on thinking this is a problem, and keep on asking for help, you will create an anorexic child!’. Those words, and the tone in which they were said (a ‘you don’t know just how good you’ve got it, I’ve bigger problems to deal with’ kind of tone) haunted me. So there was to be a gap in the timeline of appointments and support – I was desperate to avoid the danger of making everything worse so I took her at her word and stopped asking, stopped thinking about weight and tried to ignore the fact that A was growing past her fast.

In the meantime, as we muddled along, trying to be ‘calm around food’, and not draw attention to the problems (which of course were still there and growing) we kept our head down and got on as best we could. I went along to ‘webster stratton’ parenting courses (basic and advanced!!!), and it just seemed to me every week that we had a little one who was different from expectations. I remember laughing inside when we learnt about child led play & how at least 10 minutes of this each day was vital for a contented child – ‘maybe your problems and difficult behaviour would change if you tried it?’ – the diary I kept that week showed more child led play than anything else which was no surprise to me; it was the ending of it that proved tricky not the lack of it. Let’s face it, its not unreasonable to expect a 3 yr old to be able to pause for mummy to go to the loo every now and then (without working up to a frenzy which could mean hurting herself) is it?? She found the loopholes in the time out system in no time – it was quickly her doll that hit or grabbed and then of course how could I send her to time out, because it wasn’t her… she could keep her attention on changing a behaviour for just long enough to complete a reward chart and then of course get back to her comfortable routine… and no sleep techniques even seemed to make a dent in the lack of good sleep we had been experiencing since she was born!

Anyway, she was starting nursery too which might help – she was so bright, so ready for the challenge, maybe she was just bored at home, maybe I wasn’t being creative enough or imaginative enough, or dedicated enough to meet her needs. But she struggled to be left – big time! There were weeks where I rang up on the Monday and simply said that she wasn’t able to come in for a few days – she and I were under so much stress trying to do it, that we needed breaks. But of course soon enough she was 5 and had to go to school, no choice… and that year, and the year after that, and the year after that were tough.

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When she was in Reception class she had a brilliant teacher, who seemed to just ‘get her’, loved her zest for life, and knowledge, found her eccentricities fun like we did. That helped such a lot, we could talk, and share ideas, say we were worried when it had been a tough morning getting her up & out. You may remember that the government in its wisdom started a new campaign to ‘tackle obesity’ when my children were small – its still going now – as part of this campaign children as young as 4 going on 5, in reception classes had to be taught about healthy food. It wasn’t necessarily designed to designate good foods and bad foods but inevitably that was probably the easiest message for a little girl who distrusted foods to take on board. And despite the best efforts of that wonderful teacher who immediately began some work with the class around health, confidence and self-esteem, the struggles began to escalate. Within the next couple of years we went from obsessively picky, to obsessive avoidance – using all the tricks in the book, going to the loo during meals and spitting food out in the toilet (yes at 5,6,7 yrs), hiding food – play handbags brought to the table especially, as the stress mounted for her and us it got to the point where we were dealing with a meltdown before every meal and every snack, and if we did calm her and bring her to the table to eat sometimes the panic would overtake her causing her to be sick. It was out of control for all of us; A began to panic at the thought of a mealtime too and all the stress it would bring, I would begin to panic and despair as it got near to the time to prepare food. And B was not thriving. I can vividly remember bathtimes when I felt overcome by her physical fagility, not sure if I could safely pick her up – she looked as though she could snap. Something had to change.

So we broke the silence. I asked Andrew to ring the school nurse, while I stood listening, so fearful that a door would be closed on us again.

This time it wasn’t. She spoke at length with Andrew about our concerns, I can’t remember now whether she came and weighed her or it was the GP she encouraged us to see, or the hospital staff where she sent us for blood tests to rule out things that would need urgent attention if she had them. Relief slowly seeped in to the stress and sense of isolation that had built up within me over those few years. Somebody had taken us seriously, and was doing something.

From there we have continued on a slow but perhaps more steady way forward, with the patient (and thorough) work of CAMHS over the next few years, paediatricians got involved who have been monitoring growth, weight and height. Dietitians came alongside at different times, and psychologists and psychiatrists challenged, questioned, and reflected with us so that we could better understand  what was going on. Searching into our parenting, our experiences, our feelings about food. Listening carefully to B’s feelings and reactions to different aspects of our family life. There have been parts of that that have been uncomfortable, we have had to make ourselves open to strangers, we have wondered often if we were right to have begun something that has pushed B through some really difficult and challenging appointments. We have felt the guilt of that. We have also very much felt the concerns of others, ‘why are you looking for a label?’. We weren’t, but we were looking for understanding so that we would have a better idea where to turn to help B to grow and thrive.

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The day that we got given the diagnosis of ASD/Aspergers was such a turning point. Yes there was the realization that this was life long, and no one could tell us how it would go on shaping us all or what the struggles ahead might be for B. But also there was relief and hope, that through it we were gaining (and planning to continue to learn) a new way of seeing things with B and for B. And everything began to make sense for the first time, this diagnosis encompassed, explained in some way such a lot of our experience together as a family. And for B it was like finding a door to a community of like minded people in an alien world. In fact quite by chance Newsround Extra had an episode narrated by Rosie King, in which she explained about ASD and Aspergers and did it in such a positive way. (https://m.youtube.com/watch?v=ejpWWP1HNGQ) After watching it (just before one of the key assessments towards diagnosis) over and over and over, she said excitedly to us ‘Rosie is like me!’ – ‘I might be autistic?’, ‘is it something you want us to ask Dr Lorraine about?’ – ‘yes please, I’d love it if I was like Rosie, I’ve never met someone just like me.’ In that one conversation I sensed God’s gracious touch as we began more formal assessments that were needed to give us the diagnosis. It was all in God’s hands, the timing, the struggles, the future, the people who would move in and out of our lives to support, the impact on the whole family’s health and well being – it was all in God’s hands.

So, this form in front of me to be filled in this week is the next step forward in faith, I am hoping it will open up new kinds of support that will nurture and sustain us in the coming few years, and will enable what is needed to help B continue to grow and thrive. I need to reflect that alongside the heaviness and sadness that comes flooding back as I root through paperwork to find dates and names, I can also trace the faithful gracious touch of God too, as I recollect the friends and professionals who came alongside, and by recognising His protection as I look back and realise afresh that the physical damage for B could (perhaps should) have been so much worse. There were times I felt completely alone with it all, times I wondered if anyone would ever really see or listen and there were so many times I struggled to believe anyone could understand. It’s painful to recollect those feelings of hopeless helplessness. And I know there will still be moments of struggle to come… I pray I will go learning to trust, and recognise God’s faithful presence with us.

Father God, it was all in your hands all along. You have searched me and you know me, you know when I sit and when I rise, you know my thoughts – before a word is even on my lips you know it completely. You knit B together, watched as she was formed, cradled her and nurtured her in love. How precious are your thoughts to me – how vast is the sum of them! Search me and try me Lord, change me, lead me…

…Do something!!

‘Don’t just sit there watching, DO SOMETHING!’,

… his prayer began. ‘The world is broken, people are just being HORRIBLE, and its scary. I don’t understand why you don’t just come here and stop it all.’

It was definitely heartfelt. And with the Amen came, ‘Mummy did I just sound angry? Is it ok to be angry with God?’.

We finished the bedtime prayers together, and I tucked him in and switched out the light. As I sat in the darkness that’s when the quiet talking began; ‘Mummy, I’m sorry, I don’t want to feel angry with God’, ‘hey, it’s ok, sometimes we do feel that way. What’s happening round the world at the moment is really scary, I’m not surprised you feel upset. There are people we know about in the Bible who felt it too you know’. ‘Does God mind?’, ‘I think He understands… In fact I wonder if He’s feeling angry & upset about what’s happening too, what do you think?’, ‘maybe, but if He is why isn’t he doing something??…’. ‘Do you think he really is doing nothing?’, ‘Well, I suppose being upset too is doing something, but…’. ‘Sometimes as a parent I don’t come and just stop things, even if it’s something I don’t want you to do, even sometimes if I know that the consequences will be difficult for you to deal with. Because I know that sometimes that’s the only way for you to grow and learn.’ ‘Doesn’t that hurt you Mummy, knowing we might get into trouble of might get a bit hurt?’, ‘yes it does hurt. I think God does that too, and I think it hurts Him just like it hurts me & Daddy’.

There was a pause, and sleepy shuffling to get the covers comfy; a few yawns but we were not finished yet. ‘Wouldn’t it just be easier for God to just do something that stops it all, all at once??’, ‘that reminds me of a Bible story when He did do just that, when He only saved Noah & his family…’ – ‘… And He promised at the end of that that He wouldn’t ever do that again didn’t He?’. ‘He did…. There’s a tiny little verse in the new testament that says God is patiently waiting, waiting & waiting, to make sure there’s time for everyone to choose His love; Jesus came as a baby to show us that love, and invite us back; when Jesus comes back again He will make everything new, just as it should be but that’s the day when choosing time is up, finished.’ – ‘what will happen to us then??’, ‘the Bible promises that when we choose Him we get hidden in Him, so we can be sure we will be kept safe when He comes again’, – ‘but if we don’t choose Him…?’ – ‘then there’s no promise of being hidden in Jesus’love… It’s now that there’s time to choose. You could say that God isn’t doing something drastic right now to stop all these things because he’s giving us time to choose Him’.

2 Peter 3 v8,9

My hot choc is getting colder now, I remind him it’s time to settle and try to drink some. ‘But there’s always something He can do!’, ‘yes there is always something we can do!… What was it that the teacher said in assembly this week?’ – ‘that there are three things about Jesus the King that inspire people… Ah, he said Jesus inspires people to do things for other people’ – ‘yes (I just happened to have stepped in at the back to listen this week) and he showed photos of Christians doing amazing, radical things for others all round the world and said, look here’s Jesus helping, here’s Jesus doing something – Christians believe they are part of His body on earth right now, His hands and His feet.’

Yours are the eyes through which he looks compassion on this world. Yours are the feet with which he walks to do good. Yours are the hands through which he blesses all the world.

Teresa of Avila 16th century

Finally he began to settle, which gave me time to settle my thoughts. It was a great question I thought to myself, ‘why doesn’t God just do something to stop it all?’. I prayed that in A’s sleepiness he would sense something new about the wonder of God’s love for His broken world just as I had as we had talked and wrestled with it together. I had been reminded of the patient Father love that lets go so that we can freely come back; of the hurt and pain in the heart of the perfect parent, seeing the brokenness, fear and confusion of their child’s world; of the love that chose me to choose Him before the beginning of time; of the love that reaches out, that came to us as a baby, lived alongside us, died for us – that longs that none should perish, that sits with the broken, lifts the fallen, brings the lost into families; of the love that chooses to include small fragile me in that pouring out of His heart into His world.

Why? …and other questions

The conversation after prayers went something like this;

Mum I’ve just prayed for children who live in one room & have nothing, and straight after I prayed for my eczema to get better which is hardly there … but I’ve asked him to make it better – and he will, he is, he loves you – so why doesn’t he just make it better for children like the one we saw in the DVD this morning at church? I am angry with Him, he doesn’t, but he could. Why does He just let them die?? – He let’s us make choices, sometimes our choices mean that other people suffer – why doesn’t God just get rid of the bad people who make the bad choices, then things would be okay – if he got rid of people who make bad choices wouldn’t he have to get rid of all of us? – um I suppose, but … the really bad people, who do terrible horrible things, doesn’t it make God angry? – I think it does (pause) its okay to talk to Him about how it makes you angry – I don’t want to make Him angry with me – it won’t, He wants you to talk to Him, He wants you to get to know Him better & better – pause – why should I be angry with God for not doing anything if I am here doing nothing about it? – we are doing something, we try to think about how we live and the way it affects other people – I know, but its not a lot… – all we can do is do what we can, and try to do it well… whenever we pray God changes us, makes our love bigger, makes us braver, we can ask Him to make us wise so we know what else we can do…Featured image

I love conversations like this, but why, why, why do they always happen at the last minute at bed time when you still have other children to get to bed on time & visitors you really want to spend time with downstairs??! ‘Why?’, its always a favourite question once the word is learnt (so with our oldest since she was about 10 or 11 months!). There have been many ‘whys’ about God since we became parents, and as they get older – especially now we are into tween & teens with our oldest two – the ‘whys’ are getting tougher. I sometimes feel as though I am the only panelist at a ‘grill a christian’ evening, and that’s enough to give me (shy, introvert, likes to be prepared) nightmares!

As usual I sit here, after the big conversation, analysing my responses, wondering if I should have said this or that, if what I said was misleading or unhelpful, and feeling a little uncomfortable that one of my children feels disappointed with God. Why is it that I feel I need to justify God, or give a better explanation of His actions (or in this case His seeming in-action)? It is very difficult to resist that urge to pin it all down, make clear sense of it all, have a water tight argument to counter every question or doubt – all the more when I see just how uncomfortable it can be for my girls when the things of faith, or the character of God is not ‘neat’ in that way. We talk with them about God being a safe place to be, a safe person to be with – to be trusted and relied on and I wholeheartedly believe it… but what I cannot promise is that He is always predictable, or that He will always do things the way we think is the best way – which of course, if I’m honest, makes for some discomfort, the kind that makes me grow!

 “I don’t think the way you think.
    The way you work isn’t the way I work.”
        God’s Decree.
“For as the sky soars high above earth,
    so the way I work surpasses the way you work,
    and the way I think is beyond the way you think.” (Isaiah 55:8,9 The Message)

It takes time to build trust with anyone, time to weigh up their character, time to experience their loyalty and faithfulness and to begin to dare to trust their way of doing things, and their way of seeing the world. To have faith is to commit ourselves to the process of learning to trust God. It takes time, because it is something that grows, like any relationship. Sometimes to try to justify, and to answer on God’s behalf cuts through that I think. I love this phrase that Andrew came back with from a clergy study day with Rowan Williams:

“Prayer is not something we get better at, but an environment we get used to.”

I wonder if that’s a helpful way of thinking with our children about our understanding of God when these tough questions inevitably (hopefully!) come our way. It’s true that no amount of logical thinking, or categorizing can help us to know God in a way that lets us ‘tame’ Him – make Him comfortable for us, and take away these painful, awkward wonderings of ours. He is different from us, He is Other, mystery yet revealed to us in Jesus Christ (in itself mystery). I wonder if ‘sitting with’ (acknowledging it, and allowing space for ourselves to feel it) the discomfort, and sometimes the pain of that mystery is a way forward for us… an environment we need to get used to, a leap of trust into the love and compassion we see in the person of Jesus and the Father He reveals to us.

After my Dad died very suddenly I remember the endless ‘why’s’ from my children (not to mention in my own thoughts), and one day just feeling incredibly tired – weighed down by the enormity of the ‘why?’ – I put some worship music on and just held the kids hands as we enjoyed the music, joining in the bits we knew. We came to a song simply about being loved by the Father – we were quiet, calmed even as we listened. It took us to the only answer that we really needed in the midst of all those ‘why’s’ – an answer I didn’t even recognise I was searching for in my questions. I had a similar experience learning a new song this summer called ‘Good Good Father’ (https://www.youtube.com/watch?v=fd-fxhp90pw) – moments like this give me space to ‘sit with’ those questions and they nurture trust in me again.Trust in the character of God, and the steadfastness of His loving mercy – a trust I can carry into the questions that come as I read the headlines and feel helpless, that I can hold for others as I pray for them and try to do what I can to help them in their desperation or suffering. A trust I hope I am modelling for my children, by not always (okay, not very often) having the answers, but by knowing who it is I want to sit with, and holding my children’s hands to bring them with me as I put myself there again.