A Mother’s Cry: Can my Disabled Child Ever Become a Christian?

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It’s Easter Sunday, the very centre of my beliefs as a Christian, that my Lord and Saviour not only died for me on a cross to carry my sin, but he rose again on the third day to beat death once and for all to enable me (and everyone else who believes) to have eternal life.

I sat in church today and heard the gospel message preached with my beautiful children beside me, just the same as my parents did the generation before. I never tire of hearing the message of Jesus crucified and at 15 it impacted me personally on such a level my life has been rooted and grounded in my faith ever since.

Yet here I am faced with a massive question that has caused me to question my faith in a way I never ever expected: if he wanted to, could my disabled son ever become a Christian?

Why would I ask this? Well every tract I have ever read (there have been hundreds), every gospel message I have heard preached (there have been many) and every evangelist I have listened to have all taught a way to salvation that is fundamentally impossible for my child to ever achieve.

img_1145-1This is Isaac. He is, like everyone of us, made in the image of God. He is the most beautiful and incredible gift ever given to me. He is a true miracle having been prayed for and believed for against all odds. I was given medically less than 1% chance of ever having children yet after ten years of infertility God blessed me with not one, but two, babies. Isaac was the first born of twins. He has soft dark brown hair, hazel eyes that shine light and sparkle with life even if one of them doesn’t work and the other hides a tumour on its optic nerve. He makes noises, though at 9 and a half none of these noises form words that you and I can distinguish. He has severe autism. He has severe learning difficulties. He is epileptic. He has a brain tumour that means he will forever function as a very young child, most likely no more than aged 2 to 3 years.

So when I hear today’s gospel message once again I am crying, not only because the story of my Saviour always touches the very core of my being but because I know how the service will end and I can’t help wondering…

Can my disabled child ever be saved?

You see the way of salvation in the Bible is clear. It is based on such well known and readily quoted verses of so many believers: Romans chapter 10 and verse 9; “That if you confess with your mouth that ‘Jesus is Lord’, and believe in your heart that God raised him from the dead, you will be saved.”

I believe that.

But what if someone has such significant learning difficulties they will never understand and they can not speak their own name let alone say ‘Jesus is Lord’. What happens then?

Then there’s the famous one in John chapter 3 and verse 16: “For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.”

I believe that too.

But what about those who are cognitively unable to believe?

I could go on and talk about sin, baptism, the work of the cross, bridging the gap between God and man and all sorts of things that preachers and tracts talk about. Not one of these things will ever be understood by my son.

If he can’t understand the story can he ever believe in God?

He is never going to raise his hand at an alter call. He will never go forward for prayer to turn his life around, he will never hold a microphone and testify to how he was once an addict and now he is a Christian.

The fact of life is, for my son, and so many others, we need to see salvation in a different way.

Maybe I am tearing up the theology books here, maybe I am shaking traditions, but I believe my baby boy will always be saved. He will never be the lost sheep that the Shepherd longed to find. He will never be the prodigal son. He will never sin. The acts of the sinful nature (according to Galatians chapter 5 verses 19-20) are sexual immorality, impurity and debauchery, idolatry and witchcraft, hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions, envy, drunkenness, orgies and the like…one thing I can category say is that my son will never do these.

He embodies innocence. As Psalm 139 says he is fearfully and wonderfully made. Like us all he was made in the image of God. But unlike us, he can not choose to sin, neither can he choose to believe.

He can flap as we sing praises, he can make a joyful noise, he can rest in the presence of God. He can feel peace, experience joy and love deeply. I believe he can know God in his Spirit even if his mind and body don’t function as well as we would all like.

I believe he is in the palm of Gods hand.

I believe in grace that a loving God has searched my son and knows his heart, that he is familiar with all his ways. He alone created his inmost being.

God has this covered.

Can my son ever get saved when he can’t believe and confess like every preacher and tract says he has to?

I can’t quote you scripture but my mother’s heart cries out to a God who hears my prayers and is carrying my son both now and forever.

That’s my mother’s cry.

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How My Severely Autistic Son Used YouTube To Speak To Me


Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube.

He is pretty typical of many 8 year old boys in that sense. However there is something very different about Isaac: he has no spoken language at all. Isaac has severe autism as well as other complex medical issues and he has poor eye sight. He can not read or write and certainly can not type into a you tube search bar. He fumbles his way through you tube by clicking on random videos and spends most of his day flapping in delight at lift doors opening and closing over and over again.

When Isaac does listen to songs they tend to be very random or theme tunes of favourite programmes aimed at very young children like ”Peppa Pig’ or ‘Wooly and Tig’. He rarely allows anyone else to touch his iPad so he has to go on ‘rabbit trails’ through lift videos or episodes of Wooly and Tig to find anything different. Due to the nature of the video playing app he tends to be faced with a fairly limited repertoire but this has suited him immensely due to his need and love for repetition.

I am not afraid to admit I often struggle to parent my son. He gets frustrated (I absolutely understand that) and that can lead to hours of screaming or throwing himself down the stairs or hitting and pinching people. He has severe phobias of things I can not control like open doors or other children (including his sister) eating and drinking. His life has to be the same all the time which makes living with him quite restrictive. He is not toilet trained nor can he care for any of his own needs. Some days I get very low and I question ‘why us?’ My faith has been taken to levels of testing I never knew existed before.


Then one night last week I stopped what I was doing and just sat beside my son. I longed to hold him but I knew he would attack me. My love for him was overwhelming yet I was unsure if he even knew who I was. I sat beside him on his bed and I could feel the tears building at the back of my eyes. I have not been able to take him to church for weeks now because of his outbursts and his inability to cope with the slightest change. Had God forgotten about my child? Did my son have any idea of the world around him or how much he was loved? I was weeping for my child. My heart was broken both for myself and my son.
In that moment I heard words that seemed to come from God himself. A male voice I had never heard before. The words caught my heart before my brain even fully processed them..

 
“Don’t weep for me…”

What? My son was looking right at me smiling. He knew who I was and not only did he love me but he had something to share with me. He moved closer to me as his finger pulled the scroller on the you tube bar back to the start of where he wanted it to be…

Somehow, I believe from God himself, my non verbal severely autistic son with limited eyesight and no ability to read or write, had found a song on you tube that was saying everything HE wanted me to know…

Don’t weep for me, God made me this way. He’s chosen not to let me speak, but I hear every word you say…

Because the pieces of many colours symbolises what I am, it represents the hope of a cure that lies in God’s own hands” 

He pulled that bar back to the exact spot again and again as those words washed right over us both.
I was weeping for a child I thought I had lost but here that same child was showing me more than his own words ever could in a way so powerful, so emotional and so spiritual it was like God himself was in that room. 

I can not explain how he found that video. I can not explain how he understood those words and related them to himself. I have no logical explanation to the timing of me arriving in his room and him finding it or the fact he would scroll right back to the start of that chorus time and time again.
We sat there together for what felt like hours. The words of that song healing places in my heart I had not even realised were broken.

 
It was an experience I will never forget. My non verbal severely autistic son with complex medical and developmental needs brought me to tears by using you tube to communicate something I will never forget. 

Isaac can not speak to me but God can use any means he wants to give him a voice. That day he used you tube and this song.
Have a listen to what my son wants everyone to know:

 

Please stop praying for my son with autism to be healed

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So many people have told me over the years they are praying for my son. I am incredible grateful for that and the kindness they show but what are they praying about?
Are they asking God for my 8 year old to finally speak? Are they asking for his seizures to stop? Are they praying he learns to communicate or to read and write? Or are they praying for him to be healed of his autism?

Let me be very clear..I want people to pray for my son. My entire family needs prayers and needs God more than we ever have. We need love and support. But please please could you not pray for my son with autism to be healed?

Here is why.

There are many occasions when Jesus healed individual people in the Bible. These include people who were blind, deaf, paralysed, had leprosy, fevers, seizures and even those who had died. Despite studying all of these incidences I could not find any occasions when Jesus prayed for anyone who had learning difficulties or communication difficulties like my son’s autism to be healed.

Then there were mass healing events that Jesus did. Again although many were healed there is no direct reference to children or adults who struggled socially or had repetitive behaviours like my son.

The Bible says that Jesus welcomed the little children. Although I have no proof I am certain there were children in Bible times who displayed similar difficulties to my child. I know they were every bit as welcome to Jesus.

The Bible says that my child is fearfully and wonderfully made. (Psalm 139:14).
The Bible says my son was knitted together in my womb (Psalm 139: 13)
The Bible says my son is created in God’s likeness (Ephesians 4:24)
The Bible says my son is the apple of God’s eye. (Psalm 17:8)
The Bible says my son is God’s workmanship created to do good works. (Ephesians 2:10)
The Bible says God has plans to prosper my son and not to harm him, to give him a hope and a future. (Jeremiah 29:11-13)

God sees no difference between my son and anyone else. He does not view my son as less than or inadequate in any way. Could God heal my son of his seizures and his genetic condition that causes tumours in his body? Yes, without a doubt. Could God open my son’s mouth to give him clear speech? Yes, I believe that with all my heart. Could God cause him to be more settled and display less challenging behaviour and agitation? Without a seconds doubt of course he could. These are things I pray over him daily.

IMG_0440I pray for peace for him. I pray for joy and laughter. I pray for people to understand him and show him love. I pray safety as he travels so far back and forth in country roads to school each day. I pray for a receptive mind and open heart. I pray strength to his body and ease from pain. I pray for him to sleep (I am human so this is something I need too).

I pray for strength for myself as I care for him. I pray for wisdom and unity for those who work with me to meet his needs. I pray for his sister as she deals and lives with some events that could traumatise her. I pray her tender heart is not broken too often. I pray for friends she can trust. I pray she knows she is loved when her brother consumes so much of my time.

There is so many things I pray for and so many things others can pray for too. There are things you CAN pray for for my son to be healed of, but autism is not one of them. Autism is a neurological difference in his mind that causes him to see the world a bit differently. Autism is a part of the way God made him and it makes him beautiful and perfect.

God made each one of us part of a body. My son is every bit as much a part of the body of Christ as the next person even if he has severe learning difficulties, is vision impaired, has global delay and has autism. It does not matter to God that he flaps, spins, screams and is unable to speak. Man looks at all that but as the Bible says “The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.” I Samuel 16:7

I pray that the world looks at my son’s heart too.

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How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

The day one of my neighbours became an angel to my seven year old.

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I wish I had the faith of my seven year old. When she prays incredible things happen time and time again.

My daughter is so special but so fragile. God has his hand on her in a very special way. Naomi has autism. She has huge anxiety and her twin brother has a genetic condition with complex needs as well as autism. To help ease her anxieties she carries little toys with her wherever she goes, including going to school.

A week ago today her twin brother was due to go to hospital to have an ambulatory EEG machine fitted to monitor his seizure activity. Naomi was more anxious than usual that day and clung to her toys in her pocket as she walked to school.

I left her at school and headed up to hospital with her brother Isaac. It was traumatic for him and for us and we headed home with him all wired up. Naomi was collected from school by her gran as we were not going to be home in time.image

I came home to her in tears. One of her precious toys has been lost. She was distraught and I felt so helpless. I could not just go to a shop and replace it as her brother could not be left unattended and she knew this. Nothing could make things better and she cried in my arms. My heart was broken for her.

As she dried her tears and her breathing settled she quietly looked up at me and whispered

“It’s ok mummy. I have prayed. God will bring me back my toy.”

My thoughts turned to how I could make this happen. I did not want her heart to be disappointed but more importantly I did not want her faith to be shaken. I am her mum, but I can not be God. I looked into her beautiful blue eyes and saw her heart of faith.

“Naomi, you are right. I believe with you.”

And that was that. She had prayed.

As I continued to watch her brother closely we started homework with a total peace. She lined up her toys leaving an obvious gap where her missing one belonged. I knew she would not sleep tonight with that gap there but she just assured me God would bring her toy back.

She did her spelling and her reading with her heart of peace intact. She smiled, she laughed and she carried on as normal.

Then the door bell went.

Mummy, that is the Angel God has sent with my toy.”

Have you ever seen an angel? Do you think they have a halo, wings and dressed in white? My daughter knows differently. There on my doorstep stood a neighbour I only knew by sight.

“Hi, this may sound strange. On my way to work this morning I found a plastic toy on the ground. I picked it up and wondered if it belonged to your daughter. I don’t know you but I put it in my pocket and took it to work with me. I am on my way home now and just thought I would knock your door and ask if it belonged to you.image

My daughter danced with excitement. I cried.

I don’t know what my son faces but I know God is with us.
I don’t know how my daughter will cope with a future with autism, anxiety and living with a twin with complex needs but what I do know is that God has his hand upon her in a very special way.

God cares about a plastic toy for a seven year old and God cares about you.

I will never forget the day one of my neighbours became an angel to my seven year old.

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The reason I write

imageToday marks three years since I started blogging.

In that time I have gained experience, followers and a lot of views. But what made me start blogging and why do I continue when I have been accused of exploiting my children, damaging them and even attention seeking?
Well the answer can be found in the name of my blog: Faithmummy.

The week after I had my 36th birthday it dawned on me that I was suddenly nearer forty than I was thirty and it was time to do something with my life. So I prayed. Prayer is my default setting because I have a strong faith.
I thought I had ONE story to share. So I looked online at how to do this. It was too long for social media standard posts and I could not find a suitable online forum so looked into blogging. I set up a blog and prayed. And then began to write.
And as I wrote I felt there would be more to come but that was all I knew.I clicked publish and put it on my own Facebook. It seemed popular. I was taken aback!
A few days later I contacted my brother who I knew had an already established professional blog in his field of expertise. I asked him one question..
So what do I do now?
He said that I would have to update it and that many people do this weekly!
Weekly? But I only had one story!
So I prayed. And the next week I felt I had something else to write.
So I updated my blog and people read it.
As the next week approached I prayed. And then I wrote.
167 posts later, I pray, and then I write.
And if I don’t feel I have something to share I wait.

So the number one reason I write is because I feel God wants me to write. Wether people read it or not, I write for me.

Before I press ‘publish’ I pray, sometimes ‘sleep on it’, send it to a friend or speak to my closest earthly friend of all, my husband. Sometimes we all need wise council to keep us right.
Maybe some weeks I get it wrong. I am sure I do. But God is gracious and I believe he knows my heart. And I believe He is supernaturally protecting my children in it all.
No-one really knows the difficulties and opposition I have faced in my blogging journey and neither do many people know my statistics. It is a personal journey in many ways despite the fact I write publicly.

I can not tell you all the places my blog has appeared. I can not tell you the names of the people it has helped. But what I can say with confidence is that the person who has been the most touched, transformed and become closer to God in it all is me. The bigger my audience the more I need Him. And the more I pray.

I am just a mummy.

A mummy who can not face what I face without my faith.

I share from my heart, and I hope in some way I share from God’s heart too.

By the grace of God Faithmummy was birthed and by the grace of God it continues.

You might think it is about my children. But in actual fact it is about me: me as a mum, and my faith.

So even though I now write for several different places this blog will remain as Faithmummy and until I feel the time is right to stop, I will write.

Thank you for reading. Thank you for commenting. Thank you for sharing. But mostly thank you for being part of my journey.

YOU make Faithmummy what it is!

Happy birthday Faithmummy!

How did we get here?

As I sat holding my frightened 5 year old daughter in the back of an ambulance at 2:30 in the morning, for a split second, in the midst of fear and exhaustion, I wondered how exactly did we get here?

Here I was giving details of my daughter calmly to a stranger in a green uniform when all my body craved was sleep. I would say adrenalin was taking over, but medically this is impossible as I live with a potentially life threatening condition which means my body does not produce stress hormones. Moments earlier I had been lying in my bed praying silent prayers. It seemed at that moment they were not to be answered.
Naomi had been struggling for the last 24 hours with nose bleeds. At the tender age of 5 she had experienced them before. But nothing on this scale. I had already been in to her 4 times since she had been put to bed. But they just kept restarting. It was getting scary, for her and for me, and for my husband. Dad was becoming frustrated that his baby girl was not able to let him help. So he let me deal with this one. But this one was never ending. And then she started vomiting up blood. Again and again. I have never been so terrified. So I called for an ambulance.

So that was how we ended up at accident and emergency in the middle of the night with one of my babies.

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As I look in the mirror at the scratches and bruises on my neck caused by my five year old non verbal son I once again wonder, how did we get here?

How did we get to the place where he punches us, kicks us, bites us, scratches us and throws things at us? When did it all start? When did I start dreading reading his home/school diary because his behaviour has become so challenging? Sometimes things just gradually creep up over time until you realise it has become overwhelming. One unpaid bill soon leads to another, one moment of shouting at your children soon becomes the norm, one day giving in to their food fads leads to constant demands for chocolate for breakfast. One day Isaac having one tantrum and finding it funny to kick something has lead to him repeating this behaviour often. One reaction from someone, negative or positive, has lead to challenging behaviours becoming a daily occurrence. One day having mashed potato for dinner leads to constant demands for the same food to be repeated. Then one day we had no mashed potato left.

So that was how I ended up with bruises and scratches on my neck from my five year old autistic son.

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As I find myself in yet another meeting with professionals discussing my daughters personal needs regarding going to the toilet I once again wonder to myself, how exactly did we get here?

With only 7 weeks left until she finishes nursery and only 4 months until she starts school, yet here we are talking with a group of professionals about strategies that might help her come out of nappies. Did I ever think I would have 5 year old children still wearing nappies day and night? No. Did I ever think I would need professional help to potty train a child? No. Did I expect both my children to have additional needs? Not at all. She seemed so perfect at birth. And later on I just thought she was slow to walk. In fact, I had very few concerns about my little princess until she started nursery school at 2 and a half. It was quite a shock to realise that my beautiful blue eyed girl had autism, and with it bowel and bladder issues, high anxiety and gross movement difficulties. It is funny how you soon adjust to talking about your child to professionals like it is a daily occurrence. In fact, for me, it pretty much is a daily occurrence now. You get used to the paperwork, and the forms and constant phone calls. You even refer to some people on first name terms like you have known them since school. You learn to ignore some of their ideas, you learn to adapt other suggestions and you know who to chase up for the missing paperwork. You learn the talk and the lingo and the laws you need to quote. And even though it breaks your heart, you learn to call and order nappies for your school aged child because you know you are still going to need them. You’re on to the fourth attempt at potty training now and you know it is going to be, like everything else, a long journey ahead.

So that is how I am still discussing pants and toilet cards and reward charts for potty training my 5 year old.

How did we get here? I still ask that every time we visit yet another hospital, or visit the dentist or eye clinic as we do every six weeks, or when we now add in the ENT referral for Naomi. If the NHS did reward cards like MacDonalds do for their hot drinks I would be high on caffeine by now. It feels like we have our own parking space at the clinics these days.

Life happens. Sometimes it can feel overwhelming. Sometimes it is relentless. Sometimes you just find yourself in a place you never dreamt you would be. But it is ok. If someone had told me I would have been in any of these places this week when I first gave birth to my beautiful twins in 2008 I would have struggled to believe you. It is a journey. We cope with today, look to the future, pray, hope and keep on going. One day soon I will be back on the mountaintop celebrating with my children in some new amazing thing they have achieved. And I will enjoy it all the more for having been through these valleys.

And you know what, even in the great times I will still wonder, how did we get here?

How? Because through it ALL God is there. That is how I got here and that is how I will get out of here too.

(Naomi lost a lot of blood but was released from hospital that night and is now recovering. We have strategies in place at home and school to deal with Isaac’s behaviour and there is some minor progress towards toilet training one of the twins)

I’m still here, and I still love you

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Though you have just this minute screamed so loud in my ear that my entire head is ringing. I still love you. Though you have laid on the floor hitting your head in anger and frustration, throwing everything in sight about, I still love you. When you bang the table and spin your dinner plate in annoyance because I am not cooking your dinner fast enough, I still love you. When I lifted you to safety because you were about to walk head first into the corner of the kitchen work top and you rewarded me by biting me. Even in that moment, when the pain went right through me, I never stopped loving you. When you wake me up screaming and making noise in the smallest of the small hours through the night and I find myself getting frustrated and exhausted. When I roll you over, whisper in your ear quietly and give you your dummy once again because I know you need to try and sleep. Even in the middle of the night I’m still here. And I love you. I love you in all your pain, in all your frustrations, in all your laughter and in all your flapping and chest beating. I love your quirky ways and sense of humour. Even when it seemed, during the 276 days you solidly and religiously only wore your school jumper every day (yes even on Christmas day) I was sighing inwardly. I love how you thought it so funny to wear a blue top, just like that, after so long, only to go right back to only wearing that same red jumper again every single day. Even when I could cry, or I walk away to gather my patience once again. Even when I put you on the naughty step or take you to your room, even when I tell you ‘finished’ and ‘no’, even when it seems like I am the last person you feel cares, right then, I’m still here. And I still love you.

When you stamp your feet at me, shout at me and demand of me, and I tell you off for being rude or cheeky. Right there, at that moment when you want to walk right away from me and never talk to me again, right at that precise moment, I still love you. When you play with your toys and accidentally smash my favourite mug, or spill hot tea everywhere, or pull the toy right at the bottom of the pile knocking boxes of various things flying across the room. When my mouth says ‘stop that right now’ or ‘that’s it’ or ‘I’ve had enough’, my heart is still full of love even when my emotions get the better of me. When you wake up in the middle of the night from a scary dream and you call out my name. It doesn’t matter if I am not right there in your room. I am still here, and I still love you. When things are tough at nursery, when you just can’t seem to speak or work through your anxieties, when your one and only friend is not in that day and your heart sinks, I might not be holding your hand, but I am right there. When the dentist visits again and you instantly have flashbacks to the trauma of having your teeth coated with fluoride and how the very taste made you vomit because you could not bring yourself to spit out the excess stuff, I am right there. I have gone before you and prepared a way out. When I know it will just be too much for you I ticked that box that said ‘I do not wish my child to take part’. Because I love you. And I know how much you can bare. When I ask you to be quiet in full conversation because the phone just rang and you get frustrated because you didn’t get to finish what you wanted to say, when I push you to try on pants again when you would rather stay in nappies, when I get you to try and dress yourself when you would prefer I did it for you, it is all because I care. When you are struggling to pull those trousers and pants up when you have just sat in the toilet and you feel I have left you alone in your embarrassment and shame, I haven’t. I am watching, praying, pushing, stretching you and helping. I’m still here. And I love you. In the tears and the frustrations, in the moments you want to be alone, in the moments you are afraid or worried, in the moments of excitement and laughter, in all of those and more, I’m still here.

When the silence isn’t because we are a peace but rather because words have got lost in the stress of another long day. When you are leaving out one door as I am coming in from the other. When you can’t see any joy in the week through the stream of appointments and commitments. When the sum total of our kisses seem to be a quick peck on the cheek. When night and day become a non stop blur that never seems to end and intimacy is pulling the duvet closer around you. When the flame of love is a spark barely still flickering. When you have tripped over one stray toy too many, heard the same clip of dvd so often you are tempted to see if the dvd can be fried for lunch one day, and there is no longer any laughter at the dinner table. When you are still clearing away the dishes from the previous meal whilst I am cooking the next one. When you drive the car to get groceries and you are temped to sit in the car park for half an hour before going in just to get time on your own. When you have a head ache that has gone on so long you start to forget what it is like to no longer have one. When the only hand you hold is a young child’s to help them down the stairs when once you used to hold hands with your best friend and lover. When you dread the school holidays because you just don’t know what to do with the kids anymore. When your child wants pushed on the swing for so long you start to lose feeling in your arm and your chin is growing a beard while you stand there. When it seems hope is lost, the clouds will never move and the hill will never be conquered. In all those times I am still there. Still praying. Still holding on. Still loving you. We will get through this.

When you have given up on me. When you think all is lost. When hope seems a distant memory. When you sit in the middle of the floor when the children have gone to bed and the tears won’t stop. When your heart aches just to be close to someone. When you think you just can’t face another day…don’t despair my child. I know it is hard. I know some days you just feel so alone. But I need you to remember something, my precious one: I’m still here. And I still love you.

“Because you are precious in my eyes, …and I love you…for I am with you.” Isaiah 43:4-5
“And surely I am with you always, to the very end of the age.” Matt 28:20
“The steadfast love of the Lord never ceases” Lam 3:22

The battles and the breakthroughs

I thank God for the mountains
and I thank God for the valleys
I thank him for the storms he brought me through
For if I’d never had a problem
I wouldn’t know that God could solve them
I wouldn’t know what faith in God could do
Andre Crouch song ‘Through it all’

Can I really thank God when I see my 5 year old son self harming? Seeing him bite his own hand as easily as he bites into a piece of fruit? Seeing his tears of sadness at the pain but yet having no understanding that he himself is causing it. Can I thank God for the intensity of crying and upset he displays every time I start to cook a meal because he has no concept of waiting or cooking? Or seeing the bruises and the seizures and the scars from his constant falls? Can I thank God as I watch his frustration at being unable to communicate or understand?

self harm    bites      movie31     holding isaac

There is no easy answers sometimes. But I know that without these moments of struggle, of battle in our lives, we really don’t appreciate the breakthroughs when they come. If your child has never self harmed you don’t thank God that they went four hours without biting themselves. If your child has fluent speech you take new words for granted. Because that isn’t a breakthrough for you. But for me these would be a miracles.

So I pray. And hold my son. And believe for breakthrough even when it seems impossible. I can’t give up hope. I can’t stop believing.

And to keep my focus I look for moments of peace. Moments of progress in both children that keep that hope and faith alive. Treasured moments in time that make me think about the future and the fact that there will always be tomorrow no matter how hard today seems.

Moments just like this:

school bag

When Naomi had a visit from the Head Teacher of our local school to gift her a school bag in preparation for her starting in August. Oh be still my beating heart. Because this baby is growing up. Unlike her twin brother she has some understanding of what lies ahead. And we can ‘play’ school, read books about it, and even visit. To see her excitement rekindles that faith again. This little one does not think for a minute how her very existence is a miracle. She does not dwell on the support networks that will need to be in place to ensure she is fully supported in school. She sees a new bag, new clothes, new adventures. And I need some of that innocent faith of hers.

As I travel with these two little miracles there will always be battles, and bumps and moments when things look impossible. But their very existence was birthed on the belief in the God of the impossible. And so I thank God for every valley we travel through because it is in the valleys my faith is grown. And having been through many valleys I can testify that God is a God of miracles. and faith in God will carry us through…

This week I made my first ever film. In yet another week of heavy meetings, intense moments of holding my hurting son, yet beautiful moments of seeing excitement twinkle in the eyes of my daughter, I truly thank God for every battle and every breakthrough and for bringing me to this moment in time:
This is how we got to where we are now:

http://m.youtube.com/watch?v=aEGBjOAEIYo

Please continue to travel with us in this journey and experience the mountains and valleys we have yet to come.
Faithmummy x

It will get better, I promise

“Blood mummy. Blood mummy.” she cried just as I was trimming her finger nails.

The tiniest nick. But lots of tears. And plenty of blood.

If there is something sure to get my baby girl upset it is blood. She becomes hysterical at the sight of it. I just know it will be one of those stories I will hear repeated and repeated and repeated and will never be allowed to forget. But in the meantime I have to clear up blood that is pouring like a river and comfort a little girl who has gone into overdrive.

So dad wraps her finger in some kitchen paper. And I get some plasters.

“No mummy, not a plaster” she screams.The sight of the first aid box just made her ten times worse.

She doesn’t want a visual reminder of her pain. She wants it gone. She doesn’t want anyone else to see her wounds. She just wants to get better. I don’t have time to sit and explain or prepare her for the fact a simple plaster will make it all better. I even try a children’s plaster with lovely pictures on. She pulls the finger away dripping blood everywhere.

And the tears keep coming as fast, if not faster, than the blood from her finger.

We don’t do unpredictable very well in our house. We do routine, structure, preparation, This isn’t as much the pain that is causing her stress this is the look of blood, the not knowing what we are doing, the people being too close to her, the mass of sensory feelings her body is getting bombarded with. This is fear. This is the thought that things will never ever be better.

Plasters don’t work. So mummy held her 5 year old baby in her arms and firmly held kitchen towel over the small but highly distressing wound. To her this is massive. And I understand that.

“It will get better, I promise.” I whisper.

Slowly but surely it does of course. But her emotions and heart beat and adrenalin need to catch up with reality. That takes time. The comfort of being held and spoken to softly help. She is holding onto that promise. Though she has no visual sign of the reality she is trusting.

“It will get better, I promise.”

A little cream, a firm wrapping of kitchen paper and some micropore tape to hold it down does the trick. For now though she knows she is different. She feels that everyone will stare at her. She feels emotionally vulnerable and ready to cry at the slightest thing. The pain is still raw. Her mind can not yet think of anything else other than that cut. Everwhere she looks is obvious reminders of the pain. Drips of blood on her pyjamas, on the seat and on mummy’s clothes. Drips that right now seem massive. But to someone who has no knowledge of the situation they may even go unnoticed.

I remind her clothes can wash. Chairs can be cleaned.

“It will get better, I promise.”

Image

Two bedtime stories later and a little more reassurance and she was asleep. Tomorrow that little cut will be much better. In a few days time it will seem much less dramatic. The memory will be there of course. The trauma will still be there too. But in time that will fade a little. As I promised her, it will get better.

And I can promise you things will get better too.

Sometimes life is like tonight and suddenly something traumatic and overwhelming happens. And you may not be prepared. You child got diagnosed with autism, your marriage ended, you became ill, you lose your job, your landlord wants to sell your house, there is a death in the family.  Life has a way of throwing things like this at us. And just like my daughter when she saw that sight of blood, panic sets in.

Although my daughter is too young to voice it, she was probably thinking, like we all do,

‘How will I ever get over this? How can I stop this from happenin?. Can someone help me? Please just let this stop!’

It is ok to feel like that. It is natural.

Let people help. The right person can come along with that first aid kit, and that reasurring loving voice and tell you,

“It will get better, I promise.”

At first you see the plaster, that visual reminder that something is wrong, and you might panic more. You think everyone will see your pain. You feel vulnerable, insecure, broken. We all feel like that at times. It is ok to cry. When it all seems temporarily overwhemling crying is instinctive. It is part of the shock release. Sometimes it is the pain that is the issue and other times it is the thought that everything has changed, the not knowing what to do now, the sensory overwhelment of it all.

In that period of being wounded, of needing comfort, of being confused and emotionally vulnerable we all need the security of resting in someone’s arms. In my times of need I am so thankful for the loving arms of my Father God. Of being able to find refuge in the shelter of his wings. But we need people too. Friends to comfort us and keep reasurring us that it will get better. We need helped. Supported. Loved.

You may have to go through a period like my daughter of knowing you are different. I know when my children were both diagnosed with autism I suddenly realised how different life was for me. I thought my ‘wound’ was so obvious to everyone. I felt the pain and hurt would never go away. It felt like everday I was reminded of the fact my children were not like others. I felt like everyone would see that ‘cut’ and ask all about it. I seemed like I was dripping reminders of autism everywhere I went. I felt sad, alone, confused, vulnerable.

But time heals so well. I rested. And one day the wound was no longer raw. My children still had autism, just like my daughter still had that cut. But the diagnosis day became a memory. Sometimes, like Naomi, I want to replay it and talk about it. And that is ok. We just need to find the right people to listen. But things have moved on. When Naomi wants to talk about the day her finger got cut I will listen and comfort once again if the momory restirs emotions, but I will be reminding her that it got better.

She can’t keep that bandage on forever. It would not be healthy. I can’t keep going back to diagnosis day either. It happened. And things changed. But you know what? It got better. I grew as a result. I learnt, I became more compassionate, and I found new friends along the way too.

In the year I have been blogging; In the 13 months since we found out my son and husband have an incurable tumour condition; in the 18 months since Isaac was diagnosed as classic autism, global developmental delay and pica; in the 3 months since my daughter was also diagnosed as having autism; in the 4 months since we found out Isaac is visually impaired: these words have been my comfort, my strength and my hope.

It will get better, I promise.

Let them comfort you and bring you hope today too, whatever you are facing.

It will get better, I promise.