Advent 5

I am exactly where I need to be

Late tonight. It's been a day. Today I have been reminded of the village. the tribe the Lord has placed me in. My team lead unexpectedly had to be absent from the middle of the day for the foreseeable and suddenly an already pressured job is a lot more pressured. 

But I'm not alone

Wendy gave me a bottle of Coke Zero that I had not been able to pop out for but very much needed to get through emergency sorting of court cases. 

I have a wonderful team of lawyers, parelegals and trainees around me and we got so much done and supported each other. 

Fellow supervisor Helen was a rock, senior solicitor Lydia was empowering and supportive. 

The wonderful Suzanne stepped in at home so I could stay later. 

Natalya, Abbie and Amy provided moral support. 

Council provided carers already had Nathan showered and dressed in his PJs when I finally got home. 

Dee, Lizzie and Val from my home group came for a cuppa, and to keep me company as I destressed. 

Nathan was understanding despite having his routine completely upended with no warning. 

Carry each other's burdens and in this way you will fulfil the law of Christ - Galatians 6:2 

Advent 4

 I am exactly where I need to be

I would lie if I said it was easy to start again after a shock end to my marriage, alone with a teenager with complex needs. I didn't think I could, but I had to so I did. 

6 months later I ended up seeing my GP and sai the words 'I thought I was doing ok after my husband exploded our marriage', His eyebrows ended up in his hair. I had as usual underestimated the emotional impact of what happened. 

But I was exactly where I needed to be, in a home that was safe, clean from his hoarded clutter, more suitable to Nathan than ever, and surrounded by loving friends who just kept being there for me. New routines, new adventures, a new normal. 

He never took His hand off us. 

When hard pressed I cried to the Lord; He brought me into a spacious place - Psalm 118:5

Advent Three

I Am Exactly Where I Need To Be

Not long into this unwanted adventure for one, God spoke to me quite clearly: You are My rose on the Rock, You are a beautiful rose, vulnerable yet strong, and a bit spikey, and you stand on the Rock that is Me Nothing will happen to you without Me and I will keep you safe. I AM solid. You cannot fall. 

At a time where the man who abandoned me for other women and walked out on his son seemed to have it all - freedom, new relationships - while I carried the load of single parenthood, God made me see that I had the richer life, the more real life, because I was kept securely on the Rock, a rock not shaken by circumstances, but unwavering. 

Three years later I still feel that way. There is resentment over how his selfish decisions restrict my freedom, but it is fleeting and there is much gratitude for my, true, freedom. 

For in the day of trouble He will keep me safe in his dweliing and he will hide me in the shelter of his secret tent - and set me high upon a rock.

Psalm 27:5
 

Advent Two

 I am exactly where I need to be.

When we moved to Leamington, Peter strongly wanted to sell the house. I did not and unusually held fast, becoming a reluctant landlady. Less than two years later I was very grateful for this as Nathan and I were able to move home. 

Back to our old house to heal and start again. 

The house that became a home again through the friends that loved and surrounded us, who decorated, cleaned, repaired, schemed, moved, connected and cooked. Who just wanted us out of there and safely home. The family that God placed us in. 

Friends connected with other friends who they at that point did not know. The girlfriend of the son of a close friend weeded the garden. I was barred from my bedroom for a week while it had a makeover. Things just happened. I felt so very rich in the middle of fear, shellshock and sadness. 

God sets the lonely in families - Psalm 68:6. 

Advent One

When I was Christmas shopping with my two besties I found this little house. Not the kind of thing I normally go for, it spoke to me and I brought it home. 

The words spoke to me. 

I am exactly where I need to be. 

Three years ago, in November 2022, my son and I moved back to our old home, my husband having broken up our marriage, his church ministry, the house that came with that and everything I thought was ours, including our future. 27 years and here I was, a single mum of a disabled teen, juggler extraordinaire out of necessity. 

I remember sitting in my cold study (worried about heating, not yet sure about finances and in a fight with the power company) and telling my elderly dog 'You're going to have to survive another winter buddy, because I need you'. Followed by sobbing. 

Exodus 14:14 - The Lord will fight for you, you need only be still.

You are exactly where you need to be. Just sit, in surrender. He will take care of it. He did. He was so faithful. He surrounded me with a family of friends, took care of my finances, saw us through that dark winter. And has not let go, ever since. 

When I was rooting around in an old computer folder I found a lot of stuff I had written when I was pretty poorly with PTSD some years ago. It was a tough time faith wise. A time of what I now call fingernail faith, holding on to what you still know is true, but only just as if by your fingernails. 

Worship is a decision, not a feeling. And sometimes it is a decision to live the fact that God is still God and worship Him even if nothing makes sense and everything hurts. Or nothing hurts because nothing feels and everything is bone dry.  Or both.

God honours this. I absolutely want anyone in this situation to hear that God honours the choice to keep believing, keep worshiping, keep hanging on by those fingernails. And He will bless, will redeem, and will never leave your side.

Now I have come to my wit’s end Lord

which must be your beginning

I am walking alone in the desert and still

I don’t feel the wind and the heat

I know you are present but I am blind

to your pillar of cloud

and your fire by night

You died for me but my heart forgot

Because it has closed the door

on the good and the bad.

Lord I pray for rain

On the good and the bad

Lord I pray for tears,

On the good and the bad

Lord I pray for your joy,

For a heart that remembers the dance

Your voice speaks in silence Lord

but I can't hear 

Through the noise that invades my mind

I reach up my hands but their emptiness hurts

I don't feel your touch on my life

I'm beyond caring Lord just break my shell

smash into my emptiness

with the gentle strength of Your Spirit Lord

So I won't be dry no more.

***********

Pain is preferable to nothing, although it has

Taken my soul many years to admit it

And I do not know the way

Lead me Lord in the way everlasting

Bring me back to life

Life in You as the only life

Worth living

Holy Lord

Be here

A bit of a side step for World Mental Health Day

It is World Mental Health Day, well for another three hours or so, and I've been brooding all day and decided to throw in my three pence worth, heavily influenced by my own experiences, rather than any sort of expertise.

As much as faith, and my faith community, are a life sustaining force, church can be a bit hit and miss when it comes to Mental Health. Even a really good church, working hard to live out the Bible in an authentic way. Anxiety in particular can be a sticking point:

• ·         Ah, we all worry from time to time, that's normal, just keep giving it to the Lord
• ·         Pray more, worry less
• ·         Just cast your burdens on Jesus
• ·         Just put those worries at the foot of the cross
• ·         If medication doesn't work, just go back to the back of that course book, the prayers in there will help

These comments are all well meant, and also mostly very true, when it comes to worry of your every day common and garden variety. 'What if mortgage payments go up? Will Mother cope in that house on her own? Did we pick the right school? What if I get made redundant?' Your average 3am fretfulness. Yeah, I get that too. But that's not anxiety. That's normal worry, and THAT is the kind you can, and should, cast upon the Lord and He will take care of you. And I try to do it, with the typical variable result of a saint who is still very much a work in progress.

Anxiety is when your child has had a snotty nose for three days and while he tears around the house with his dog, happy as Larry, you sit on the edge of the sofa, paralysed, with just this obsessive compulsive thought going round your head 'He has leukaemia. He is going to die', round and round and round. To the exclusion of everything else.

Should I also cast this anxiety upon the Lord? Most definitely! Am I able to do it when this obsessive-compulsive anxiety really has a grip? No. Can't even fish a teabag out of a mug. It's an illness. It has ugly causes in my past and needs treatment in the here and now.  

Just bear in mind when you suggest 'just casting it upon the Lord', that this is the same as telling people to cast broken legs, cancer or diabetes onto Him. Just because it's in my mind doesn't mean fixing it is any easier! You would not tell people with a physical illness that a bit of prayer will fix it and you would certainly not suggest that they stop treatment and 'just trust in the Lord'. And yet, with mental health that is somehow ok? Depression and anxiety are so often painted as a lack of faith, a lack of trust in the Lord. Let me tell you, when you stand helplessly by the incubator containing your terrifyingly sick newborn baby, you either trust the Lord, or stop believing. So don't say I don't trust the Lord enough. I do. He has never given me reason not to. I simply have a mental illness that I didn't ask for and cannot fix on my own by just praying a bit more. 

God could choose to heal me instantly, through a miracle. He doesn't always. He worked a few in my son's life and that is more than anyone can ask for in their lifetime. Our God is a relational God and we are relational people. That clearly shows in the things that are making me get better, and I believe these are the means God puts in place to heal me at this time:

• ·         Friends to talk to and pray with, and who pray for me
• ·         A remarkable GP who in the current climate makes time to listen and care
• ·         A good ('secular'!!) counsellor who is properly skilled in Cognitive Behavioural Therapy
• ·         Medication, that gives me some rest and allows me to cope with therapy, and find my balance again. (Yes I need it, no it doesn't change me, no it's not addictive)

I have every hope of beating this again and feel better in and about myself. That's not given to everyone. Mental illness can be lifelong. Medication can be necessary for life. That can be hard to come to terms with. Here's a simple test: Before you decide to suggest something to someone about their mental health, ask yourself 'would I say this about diabetes too?'. No? Then think again. 

Humour will see you through!

A much needed tool in the toolbox of a parent with a child with special needs, and at times the only one that will get you through, is humour. I'm delighted to share a prime example, written by my friend, fellow special needs parent and author Mel Hodgkinson. It cracked me up, hope you like it too!

"Jacob came home with his class weekly timetable today. Parts in brackets are my additions .

Personalised Focus Work (aka "please just sit still for five minutes. No, focusing personally doesn't mean admiring yourself in the mirror."

Registration/Communication. (aka "is he still in the room? I turn my back for three seconds ....").

English (aka - this is where Jacob expands his vocabulary as he debates whether he should be participating in this subject, or climbing on the radiators. Key arguments to include "okay then," "bye," "see you soon,", "never mind okay then", "later," "then later", "we will rock you" and "steamboat shenanigans." Teacher's response to be determined).

Physical Activity (aka- "this should help to calm him down").

PHSE - (aka - "Why we do not look down the teacher's blouse or grab great handfuls of the TA's hair and try and swing on it").

Maths (aka "do I still have all my marbles?")

Planned Social Interaction/Circle Time (aka Jacob maintaining his reputation as an international child of mystery by refusing to answer any question).

Lunch (aka "food! He keeps quiet and still when there's food!")

Physical Activity. (aka "well, the first bout of PE only served to give him a new burst of energy. But this time he'll definitely be calmer.")

Taught PHSE (aka "why it is not appropriate to look down the TA's blouse or grab great handfuls of the teacher's hair and try and swing from it.")

Geography/History (aka "where am I? When did I get here? Every thing's just a blur!")

Sensory Integration/Physical Activity (aka "what do you mean he's as lively as ever? Jacob, sensory integration does not mean picking your nose!")

Music with another class (aka "Jacob, stop drumming on the radiators. Get off the radiators. No, you can't play 'Another One Bites the Dust' on the Glockenspiel.")"

reproduced with permission

Have you ever seen one of the videos about Team Hoyt? If you haven't, read no further, just watch this very special father and son team in action. Here for example. Hoyt junior has severe cerebral palsy and expressed a desire to run. So Hoyt senior strapped on his running shoes. Now they run triathlons together with the father lifting, pushing and carrying his son. His son, he says, does the racing. He is merely his legs. If you doubt that, watch Rick Hoyt's eyes and body language as they race.

I ended up watching one of their videos again the other night, after sending someone else the link. And not for the first time I cried like a baby. And I ended up wondering what it is that makes me so emotional about it. Part of it is that I am blessed to live with a father and son team that, although at somewhat smaller scale, is remarkably similar. My husband Peter considers it his duty and joy to help Nathan explore areas where he cannot go by himself. The buggy is only used when I'm out with Nathan on my own. When daddy is around, Nathan 
travels on his shoulders and they go everywhere. The familiar image of my boys travelling together in this way is my very favourite one and actually, Peter is much harder to spot in a crowd without his passenger's blonde hair sticking out above, as that is what I automatically look for. Of course Nathan is growing fast and getting heavier, but Peter isn't ready to admit defeat just yet.

But there is something else about team Hoyt that really touches me, something deeper. And the other night I caught it. It was in the lyrics of 'I can only imagine', the song to which the video I was watching is set. 'Will I dance for you Jesus, or in awe of you be still'...'Will I sing hallelujah, will I be able to speak at all'.
Both Dick and Rick Hoyt are dancing to Jesus. While singing hallelujah. As yet another song says 'with arms wide and heart abandoned'. They are living their lives in front of God, squeezing every last drop out of it. And it is something to be jealous of. I don't quite manage that. My son does. Nathan lives with his entire body, as much as he is hampered by the cerebral palsy, and with his entire soul. He's in it. Totally in it. And nothing stops him. No wonder he falls asleep like a log at night, he is spent. He has rolled, crawled, fought, challenged, played, explored, learned and rough-and-tumbled his way through the day. I try to learn from him to be in the moment, in the day that God has given me. Somehow I find it hard.

The pain of not being able to communicate

The last two Thursdays Nathan has come home from school in tears. The first week he was fine on the bus and burst into sobs on my shoulder just as the driver was saying how good he had been, the second week he started crying on leaving the last stop before our home. The cause: The person putting his splints back on after swimming not getting it right and him being in pain as a result. We found this out quite quickly, because the only other time something similar happened there was something stuck in his shoe so we went feet first and found indeed his heel several inches up and his toes squashed.

It is hard for most people to understand Nathan. He relies purely on his limited and unclear speech, not very keen to use signs or even the speech software on his iPad and he clearly had not managed to explain that his feet were hurting. The tears were relief that mummy and daddy would now make it ok. The second time he kept crying for a while after we took his splints off. We sensed frustration in the tears too.

He doesn't help himself though. Apart from the speech issue he is also currently obsessed with the scuff marks on the noses of his shoes. He says that his shoes are hurting. So apart from understanding what he is trying to tell you, you then have to figure out if his shoes are hurting or his feet!!

I phoned his longstanding and rather wonderful physiotherapist and like all good professionals working with children she listens to parents. A plan of action was quickly formed and splints are now checked several times a day in the classroom to prevent him being in pain, an attempt is made to get him to hand in a card to say his feet are hurting, a clinic appointment has been made to review his splints. New boots will be ordered. His physio has found that if you ask Nathan if his feet hurt he gives a pretty clear answer! So it will all come together again and another problem solved.

It's one of the toughest bits of having a child with special needs. Finding out they have been in pain and unable to do anything about it. You don't realise how much our society relies on verbal communication until your child cannot fully take part in life due to speech issues. Nathan is a fantastic communicator and has from a young age used everything he can (voice, facial expression, hands, body) to express what he wants. But sometimes what he says requires an adult to give him their undivided attention just at the time when he is trying to express something. And that does not always happen in real life.

He is a trooper and very determined. He will get there. But this is why we worry more about his speech than about his walking...

An angry one - ASD and ADHD are real, deal with it

Crudely speaking Nathan is a classic example of the nice and acceptable face of disability. A cute little kid in a walking frame who smiles a lot. It is easy to feel sympathy for a child with a physical disabilities who just needs a little more time and help. Funnily enough no one ever stares at me with this 'Jeez, you are a rubbish parent, all your kid needs is a bit of discipline, mine would never have gotten away with this' look that is the daily diet of many of my friends whose children have less visible disabilities, like ASD and ADHD (or both at the same time!). Not only do these parents generally end up exhausted, looking after children who do not sleep when other children sleep or who are not able to entertain themselves for 5 minutes or who cannot be left to their own devices for a second for safety reasons. They also face a harder battle to get the support their children need (cerebral palsy is just that much easier to understand and measure). And on top of that they cope with a society ready to believe that children with behavioural difficulties are 'just naughty'. Their parenting is always under scrutiny from Joe Public who knows all about autism because he's seen Rainman and who doesn't believe in ADHD as 'these kids just need some discipline'.

One of my friends has just pulled the plug on her facebook account because she got what was effectively hate mail on her wall from people who had read a website suggesting that the man who defined ADHD (Attention Deficit Hyperactivity Disorder) had said on his death bed that it was all lies. He didn't say that. He expressed his concern that more children than necessary are medicated. That's a different game altogether. Snopes explains it here. I've read the original article in German. It doesn't say he thinks ADHD is fake. What makes people think they can hound a parent of a child with Special Needs with 'proof' that the child's special needs are fake in the first place? No one would tell me that Nathan doesn't really have cerebral palsy and that he could walk if we just refused to put him in his walking frame. It would make no sense. In the same way it makes no sense to tell a parent whose child has no 'off-switch', who is oversensitive to every external stimulus going, whose world ends if the recipe of their favourite baked beans changes slightly, who never seems to sleep, who cannot concentrate at school, and who does not know how to communicate with peers, who will only watch one and the same video over and over again or who screams very loudly trying to drown out the stress that their child does not have a real disability just because you've read something somewhere.

Let's play it straight. Nathan gets DLA. He gets Mobility at the higher rate, as he can't walk. He gets Care at the middle rate because he goes to bed at 8 and stays there until 7. So we get down time, and sleep. Some of my friends' children get Care at the higher rate because they struggle to go to sleep, wake up a lot and happily start the day at 2am. Now you choose, the extra money or the sleep? Yes, I thought so. I wouldn't swap either. Nothing gets you down like never having a good night sleep or a decent break. It wears down your sanity.

ASD (autism) and ADHD are real. Very real. Tough for the kids and tough for the parents and for siblings. Believe it. Accept it. Don't let government rethoric and media frenzy tell you what to think. Use your common sense and understand that other parents also love their children and also know how to use appropriate discipline. That they do not need your parenting advice and judgementalism. If you do not know anything about the difference between meltdowns and ordinary temper tantrums it's easy to find out more. Like here. Children with conditions like ASD and ADHD need your support and so do their parents. There will be at least one child in your circle of friends and acquaintances with a problem like this. Your understanding of what it is like will mean a lot.

PS: Rainman. Famous film featuring Dustin Hoffman as a man with autism who is also madly clever with cards. My first encounter with autism. Responsible for commonly held belief that every person with autism is also outrageously genius at something. This is not true. Only a small percentage has a gift like that.

Speech, questions, hope and jokes

People, friends and strangers alike, are always commenting on Nathan's wonderful smile. From a very young age he has had the ability to light up a room or the face and heart of a grumpy adult with no effort at all. Turning on the beam, they call it. And people call him 'smiler' wherever he goes. Whereas this smile is an expression of his very sunny nature, it also has a second function: Nathan struggles to speak with clarity and is well aware of that. He is bright and so knows that people who don't know him well will not easily understand him. So he uses his smile as his preferred means of communication: 'Hi, are you nice, I like people, I won't say much, but I will beam at you, because I am a very sociable person and I love making contact'. More recently he will confidently say his name to most people (pronounced  'Naynan', so in need of translation at times), add his age (five!!!!) and will say something about whatever toy he is clutching (usually a train or a car).

Speech is an essential part of our communication with each other, an important tool to get by in our society. It's therefore no surprise that Peter and I are more concerned about Nathan's trouble with speech than we are about his mobility problems. It is easy to underestimate Nathan if you judge him by what he is able to say. His speech problem is caused by unwilling muscles not getting the right signals from his damaged brain, it is not in any way linked to his understanding. It does also impact on his reading progress. Thankfully he is at a fantastic school where specialist teachers help him learn as much as possible despite the speech trouble, as well as work to improve his speech and other forms of communication. We thank God (and the wonderful Family Fund) for his iPad, with its specialist speech software - think Stephen Hawkin with pictures- that can also be used to practise reading and writing. And we rejoice in small things that others take for granted.

Every school holiday we are bowled over by the progress he has made with his vocabulary and clarity since the last one. This is because when he comes home after a long school day he has no speech energy left, so we get limited language. It means a step change for us every holiday, catching up with new words and sentences and the quirks in pronouncing them ('tooden twing' took a while until I saw the wooden swing he was referring to...).

To our great delight he has just started asking questions. I am not yet tired of 'mummy doing?' 'Daddy doing' and  'Andy doing?'.(It might yet come, after all I always said I would never lose the plot with 'Mummmyyyyyyymummymummymuuuuuuuuummy' after waiting for 2.5 extra years to hear the magic word and that didn't last..) It means that we have a whole new way of having conversations, and can bring in lots of new vocabulary. It's wonderful!

And our practical joker has started to crack verbal jokes. Maybe not very funny to the ordinary hearer, but amazing to us. Nathan sits all the way at the front of the school bus and when one of the teenagers in the back called him recently he yelled 'I'm not here!!!!' It is amazing to hear him use language for pure fun and nothing else.

And so we thank and praise God. And keep hope. And will him on. And do what we can to help him fulfil his full potential.

Just a minor procedure

Sometimes being mum of a child with special needs can make you feel extra vulnerable. After a day and a half in A&E earlier this week I am now waiting for an operation to have my gall bladder out. A straightforward procedure, keyhole surgery, day admission only, home the same day, just a few weeks to recover at home with no lifting and straining. Oh that's ok then. 

Hang on.

<rewinds tape>

Say that last bit again?

A few WEEKS with no lifting and straining?

<major panic>

For most people the no lifting and straining is straightforward enough. No lifting boxes, no carrying shopping. For me it means not being able to lift and support my 5 year old with cerebral palsy. Eek. 

Despite the cerebral palsy being one-sided and mild, Nathan needs to be lifted in and out of bed, onto the floor, onto my lap to have his teeth brushed, supported in standing to be washed, placed on the floor, dressed and undressed, lifted in and out of the bath, carried down the stairs, supported walking up the stairs, helped in and out of chairs, on and off the sofa, lifted in and out of his high chair, supported on and carried off the bus, lifted into his car seat, lifted in and out of his walking frame, trike and buggy, there are still nappies to be changed and a myriad other moments in time when he needs to be picked up or otherwise supported. And there are the all important and much hated leg stretches. 

I have a wonderful husband who pulls his weight anyhow and will do whatever needs doing for those weeks. I have wonderful friends who will chip in if needed. But like many special needs family, in ours things work just so as long as they work. It gets a lot more complicated if the child in question has autism or behavioural difficulties as that will often make it much harder for others to help out, so we are lucky in that respect.

So yes, it's a minor procedure, and everything will be fine. But maybe this explains why I'm just a little bit scared and worried!

Fault, blame...and guilt

Fault, blame and guilt. The triad of unhappiness with guilt possibly the most destructive of the three. Guilt is part of every parent's life. Not enough play/read/listen time? No healthy, balanced, home cooked meal seven days a week? Not enough money to give them everything you want them to have? Familiar and normal. 

Feeling that you somehow should have been able to prevent or fix your child's disabilities? Familiar yes, familiar I reckon to most parents with a SN child. But normal?

I've done battle with it for a long time. My Nathan was absolutely fine until possibly the beginning of my long labour or even slightly before. He had more or less recovered from whatever had hit him as he was pink and bouncy at birth, not blue and floppy. This makes him a bit of a rare case as most similar cases happen through oxygen deprivation at birth. That's why it took them five days to find out why he kept having seizures in his first 48 hours - significant brain damage. My consultant's best guess is that my body doesn't cope well with labour and triggered an inflammatory response in Nathan's brain. So I felt I had let my precious baby down. My womb should have been a safe place, and it wasn't. At some point it became a dangerous place and there's nothing I could do about that.

A few years later I had a very early miscarriage. A good friend, knowing me well, said 'Make sure you don't blame yourself'. Which is exactly what I was doing. I hadn't kept the first one safe, so what made me think I could keep the second one any safer! It's worked through and behind me now, but that has taken a lot of time and a lot of pain. And so much wasted energy. At least now I only feel guilty about not doing his stretches enough, not spending enough time doing exercises, not spending enough time practising reading and talking...ah the usual gumpf. 

Blame and fault are another game altogether. I have friends who are struggling with feelings of pain and anger towards medical professionals who didn't listen, didn't act, and then didn't take responsibility. It leaves them with an ongoing sense that it needn't have been this way. I feel grateful that I don't need to struggle with that. On one hand we all make mistakes. I make mistakes. If my mistake affects a client I grovel to the Court and ask for my client not to be prejudiced by my error. There is precedent for that, senior judges have said over time that clients should not be prejudiced by the mistakes and oversights of their representatives. So that sorts that. Me being embarrassed is ok as long as the problem gets fixed. A doctor or midwife making a similar mistake can have consequences that cannot be fixed. Oxygen starvation, brain damage, disabilities. A doctor or midwife doing so on an overcrowded, badly run ward while refusing to listen to the mother who thinks something is wrong is a tragedy for all concerned. 

A woman is very vulnerable in labour. I remember lying on my back, helpless, connected to drips and incapacitated by an epidural while my baby got tired and distressed. I was confused, scared and totally dependent on the judgement of others. When I met my obstetrician some time after birth he put Nathan's heart monitoring sheets on the table and said I could probably find someone who would say that I should have a c-section much earlier in the labour. He was an experienced expert-witness, I'm a legal bird, it made the conversation easier. Crucially I feel that (unlike many!) I had good care, I had at least one midwife with me at all times, was given options and choices where possible and was clearly told when it came to that point that my baby was too tired and needed to come out now. I know I was monitored by a doctor for quite some time and I believe that a careful judgement call was made. Maybe a mistake was made, although I am inclined not to think so. I feel able to say that mistakes are made, and to let it go. I do not feel and never have felt an inclination to sue the hospital. 

For some parents not suing is not an option, not because they are such vindictive people, but because their child has been left so profoundly disabled that 24h care is needed. Suing is then the only way to make sure that care will be there, because social care budgets simply do not stretch and as a result it is rare for anyone to get the care they need and deserve. So in a real way the NHS' insurers pick up the tab for the care the welfare system should be providing. False economy? With the current vicious cuts in funding this will only get worse with more parents being forced to take legal action to provide for the care needs of their children.  And a culture of blame against medical professionals continuing. Not good for anyone. 

So what am I trying to achieve with this rambly post?:

I'm calling those fellow parents of SN children to stop blaming themselves, to stop feeling guilty. If you could have prevented your child's troubles you would have done. You are good like that. 

I'm calling for grace and empathy for overworked midwives and junior doctors who staff underfunded, understaffed, exhausted maternity department and end up making errors of judgement. 

I'm calling for the government to stop funding managers and targets and to spend some money on the staff that is actually needed on the wards. 

And for a universal amnesty on guilt. Guilt is like a thief in the night. It robs you of joy and leaves nothing in return. Grace not guilt, that's what I say...

Special mummies for special babies.....

Special mummies for special babies. Yes that one. I've mentioned it before in my first blogpost. That phrase that I advised you not to use within my earshot.

People using it frequently believe that it is a compliment they are giving you. It comes coupled with sentences such as 'You are so fantastic with him' and particularly 'I could never do that'. When I object against the phrase it is frequently seen as me being too modest, and that is totally missing the point. It makes me angry because it suggests that I somehow have special gifts that make it 'ok' for me to have a child with extra difficulties. No it isn't and no I don't. I was pregnant just like you, had dreams just like you and had a baby just like you. I didn't come prepared, I didn't get extra training and no I am not a specially nice or patient person. There is nothing in me that makes me specially qualified to look after my SN child except the fact that he is my child, I am his mum, and I love him to kingdom come and back. And that is why you could do it too, if you had to. And to be really harsh, you may still have to. 

There is also a deeper level on which it makes me unhappy and restless. The idea that God somehow picked me to look after Nathan because Nathan was going to be disabled suggests that God deliberately made Nathan disabled. After all he grew in my womb for approximately 8 months and 3 weeks before coming to grief. And no, I do not believe in a God who makes children disabled. I believe that ours is a fallen world in which many things go wrong, including illness and disability (and earthquakes, hunger, wars, sexual abuse, addiction, broken relationships...) because we as a world have turned away from God. God didn't make Nathan disabled. God longs for Nathan to be whole and will one day make him whole. Why he has not already made him whole in this life is another question, and one to which I have no answer. But the long and short of it is that I do not have special God given skills to look after a disabled child. It is God who helps me through, who gives me strength day by day, but that is another matter. 

Special babies make special mummies, that much is true. You never know how much of an obnoxious battleax you are until that side of you is called upon to make sure your special sprog gets what they need, fighting your way through lack of services, upsetting formfilling (DLA forms anyone? Such easy extra money according to some newspapers. All you have to do is write a 40 page form about all the things your child can't do and submit lots of medical reports and then you hope for the best) and funding cuts by a vindictive government whose prime minister should from own experience know better. 

But the only true special one is my special son. I bow to his sunny nature despite everything, and his stubborn bloodymindedness which comes from having to fight so hard for what others take for granted. I'm dead proud of him. 

Sweet with a touch of bitter

Today is a special day, my big little man is five. FIVE! How did that happen? He has had an exciting day, lots of fun at school and presents when coming home and cake for pudding! Party with his mates tomorrow and cake with family on Sunday. He's proud to be five, waving his handful of fingers at everyone who will look, including the grandparents, via Skype. 

But today is also the 5th anniversary of the worst thing that ever happened to me, and to his Daddy. 12 hours after birth we were in intensive care with a baby who kept having fits, every fit every five minutes stopping his breathing. Incubator, intubation, drugs, fears, wires, monitors, questions, no answers, confusion, and a great deal of hurt. 5 days of uncertainty about his life, weeks and months of uncertainty over his future. 

It is sad that on a day that should be totally happy, there are always memories of those terrifying early days. Don't get me wrong, it's nothing like the pain of losing someone you love, and joy is very much the dominant emotion of the day, joy about having such an amazing, clever, loving and special small person in our lives. Celebration of the miracles God has done in his life. Remembering that the one thing they were sure of was blindness, followed by epilepsy and how they were wrong on both counts. Delighted to be wrong I hasten to add. And there's nothing like children to keep you living squarely in the moment. 

Some people may say that I should 'move on' from it, forget about it, it's in the past and look how well he is doing now. Fact is that I have moved on, I had help to heal from the trauma experienced and so much support from loved ones. I don't have to move on any more than this. It is part of who we are as a family. Something of this magnitude shapes forever who you are an how you do things, whether you like it or not. In some ways for good: I never take the health and happiness of loved ones for granted, intensily enjoy beautiful moments, do not give a toss about money or security and rarely look further than about a year ahead. And it makes me even more proud of that little boy who has been setting himself projects to achieve from about 11 weeks old when he accidentally rolled over and became obsessed with repeating the feat. Who was called 'a very determined little boy who persists when something is challenging' by one of the experts assessing him for a statement of special educational needs. 

It is quite ok to feel a touch of grief, to think that he deserved a better start and fewer challenges. A touch of grief for that lovely newborn baby time that never really was. It doesn't stop the here and now, and it only strengthens the joy. God is good, and God is faithful. 

Last night Nathan said 'Nathan'. Almost five and he's cracked it, he can say his name. I admit it, I squealed. 

We've had long times of saying 'no' when asked for his name, then he called himself 'Naynay' for a long time. In the last month or so there was a shift to 'Naynen' and then finally last night the 'th' appeared. He beamed with pride. 

Some cliches are true. The one where they say that it may be tough to have a child with special needs, but that you will never know joy like the joy you feel when they achieve things that others take for granted. That one is true. It is very true. 

He managed to pull to stand over Christmas and oh my the whole world was told about it. It's the first thing I said walking back into the office after the break.

There simply is no joy like it. And it way outweighs the occassional bouts of heart ache watching him struggle with things. 

List of things that you don't expect to come with your child when you're still pregnant and dreaming:

Walking frame (First Rifton Pacer, now the far more exciting bright yellow R82 Mustang!!)
Tripod walking stick
Specialist Trike (Possibly the only non breathing thing we would rescue from burning house)
Leg splints
Oversplint boots
Kneepads
Arm splint
Botox injections
Juni chair
Size Two Mountain Buggy age 5-9 (when folded almost too big for even my boot)
iPad with speech software (Think Stephen Hawkin with pictures)
Physiotherapists (let's hear it for the amazing Heather and Julia who have looked after him for nearly 5 years now)
Occupational Therapists
Speech therapist
Paediatric Consultant
Orthopaedic paediatric surgeon
Fantastic special school 
Specialist school transport (Jackie and Dermot are the best)
Disability Living Allowance applications
Motability Cars
Blue Badge (A blessing and a priviledge)
Ignorant Health Visitors
Statement of special educational needs
Home-school books
Referral forms, application forms, charity grant forms

But hey

Who cares. We've got this. So worth it. 

Have you heard of the poem 'Welcome to Holland'? It is about how it feels to find out that your child is autistic but can just as easily be applied to many other disabilities. If you do not know it, you can read it here. As far as I know parents of disabled children either love it or hate it. I must confess I really do not like it. Life with Nathan is not, and will never be, a second choice destination. He is a true gift from God and my perfect child. The best way I can sum it up is 'I never felt entitled to Italy', with Italy presumable meaning having a child that has 'nothing wrong' with it. Children are precious gifts, whether or not they can walk, whether or not they are autistic, whether or not they have behavioural challenges. It does not change their value as a human being. My life would not have been better, richer or nicer if Nathan had not been brain damaged. Easier maybe. But not better. It would have been very empty if he had not been born. 

A child is always a gift, whether 'perfect' in the eyes of the world or not. No one knows that better than those who have experienced or still experience the pain of childlessness. Except maybe those of us who are given a child with special needs (please do not say 'Special babies for special mummies within my earshot. That would be a very unwise thing to do. I can explain if you wish). Those who need to face up to the fact that there are people out there who think that their child is second rate, should not have been born, is a burden. 

A child is received by raising empty hands to God, not by going to a dealership and ordering size, colour and specification. A child is given. 

My Nathan is perfect. I've just been to check on him as he sleeps and yes I can confirm he is perfect. He is my baby, my miracle, my 

''Gift to me
A song that's free
Coming Down in Time and Season
From a higher place
and higher ways
and a Love that gives no reason''
(Martyn Joseph, Gift to me - this is my Nathan song, I sang it to him when he was inside me, when he was crying as a baby, and at his baptism). 

Maybe there are people who firmly plan to go to Italy. They will come a cropper one way or another. Their child is bound to disappoint them one way or another, or life will. Me, I am blessed. Truly and utterly blessed. And in love with my amazing child, who was fearfully and wonderfully made. (Psalm 139)

Getting tough with the outside world is one thing, getting tough with my own child is also not something I had signed up for. From the age of 6 months old, when the suspicion of cerebral palsy was confirmed, physio commenced and stiff hamstrings discovered I have been doing daily hamstring stretches. Making your child cry on a daily basis by hurting him is Not A Fun Thing To Do. Having your son use his limited language skills to plead with you not to do the stretches just sucks, there is no other word for it. The orthopeadic consultant saying Nathan's hammies are looser than his own mollifies a bit, but doesn't make it easier. All you can do is pin him down, persist, keep explaining that it is to make sure he can crawl, hop around, pull to stand, walk and ride his trike. Which he may understand but certainly does not appreciate in the moment. It's a surprise he doesn't hate me frankly, although the carefully built in ritual of hugs and cuddles after may have helped with that. 

Perhaps unsurprisingly it leaves you a bit puzzled when a mate tells you that she cannot get antibiotics into her two year old because said child doesn't like it and wriggles too much! 

Less dramatically it's sometimes necessary to be tough to help Nathan practice his skills. 'Want on sofa', ok then honey make a start, use your arms and legs, pull to stand then I will help with the last bit. No? Ok then stay on the floor. Strop. Ignore. Strop. Ignore. Pulls to stand, I help, I win, skills practiced. When he had just learned to sit himself up he would often find a suddenly very necessary toy just out of reach and would grunt at me to get it. And I would say 'You will still be disabled when you are 18, get on with it yourself'. Helping doesn't always help. 

Although that time in the supermarket car park when I told him to 'Help me to get you out of the trolley, you are not THAT disabled' I did see a few shocked faces! But you have no choice. Your aim is to help your child to become as independent as possible with a view to the future, and if that child has significant challenges you cannot leave it to happen all by itself!