He is there

imageCompanies often have silent partners. Many businesses and charities do too. It is a highly successful strategy that brings stability, maturity, and grounding to an organisation.

Yet people are quick to judge when it seems a marriage has the same balance.

Sometimes I go to meetings for my children on my own. I send emails on my own and answer and make phone calls mostly on my own.

But that does not mean I am truly on my own. You may not see him, but my ‘silent partner’ is there. My children have a father. I have a husband.

And there is a reason why he is more ‘behind the scenes’ than some people would like.

Everyone copes differently. That does not mean that any one way is right. And we all have different strengths.

I find social situations quite enjoyable. My ‘silent partner’ does not.
Meetings rarely make me nervous or intimidated. My soul mate finds them heavy, frustrating and stressful.
I find talking openly about my children’s difficulties fairly straightforward. Communication is one of my strong points. My husband finds this difficult and draining.
I quite enjoy form filling. For my partner this is like sticking pins in himself.
I find multi-tasking comes as second nature. For my lover this is confusing and he would much rather finish one task before moving onto the next. Interruptions like unexpected phone calls, cancelled meetings and children’s illness cause him to become anxious and flustered.
It is second nature to me to put the ‘right’ jumper on the right child, make sure the food is not touching on the plate, and do up the buttons on their coat in the ‘right’ order. But the stress of ensuring things are ‘just right’ for our autistic twins can become overwhelming for my husband. The slight change of detail can throw either one of our children into a screaming meltdown that lasts all night, so his fears are both real and understandable.
Homework is a mystery for my partner. He struggled though school and finds modern ways of doing things confusing.
Dealing with a screaming child who can not speak limits my partners patience. And I totally understand that. I am far from perfect and my patience runs thin at times too.

It doesn’t help that both our children have complex needs. They both thrive on routine and have rigid ways of doing things. They are more relaxed when the same person does the same thing everyday. They need the same words used, the same voice, the same physical touch and way of doing things. So they both cling to mum as if their life depended on it. In many ways it does.

But they know, just as much as I do, that dad is still there. He may seem in the background. But he is there.image

Some of you will be saying right now that my ‘silent partner’ is just a typical man. Some may be annoyed he is leaving more to me. Some of you may even wonder if he understands it all. A few may even feel he doesn’t care.

Let me tell you something: He cares. He loves. And he sees. He is very much here.

But there is something I feel people should know about this very important ‘silent partner’ in my life: My husband has neurofibromatosis type 1. The exact same genetic tumour producing condition our son has.

Some of his struggles are due to his upbringing, his personality, his age, or his lack of support in school. But some of it is because he has NF1. That affects his way of thinking, his behaviour, and his personality. It is part of him. It makes him less confident, means he struggles more with some academic things and he may seem less social. It is all too easy to judge his ‘silence’ as lack of caring or interest. That could not be further from the truth. I never knew he had NF when I married him. But even if I had it would not have affected my love for him.

Sometimes the most amazing support comes from someone just silently holding you, listening as you pour out your heart. Often that silent partner is the one with the wisdom, insight and calmness to hold it all together. Sometimes the most powerful thing anyone can do is just be there.

He has neurofibromatosis. He isn’t as ‘in your face’ as I am. He isn’t as known to all the professionals dealing with our children as I am. He doesn’t write in the home school diary, or read the bedtime story.

But he does something very important. For me. And for his children.

He is there.

And we all love him.

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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

Show me…when the words won’t come

Have you ever been to a card shop but you just can’t find the right card? When it’s not a simple ‘happy birthday’ or ‘merry Christmas’ moment or perhaps even a crisis or bereavement. When you read the words on the cards but none of them seem to convey what you want to say. I guess that is why there is a market for blank cards. But then sometimes you just can’t think what to write yourself. Sometimes words just won’t come. If you could only just see the person and give them a hug. Then you could show them you care when the words won’t come.

If this is how I feel as an adult at times when I have a vocabulary of thousands of words at my disposal and an understanding of language that allows me to use those words to convey meaning, thoughs and emotions, it is no wonder children with limited language and understanding find putting things into words so hard at times.

My children are almost 5. My daughter has good understanding of spoken and written language for her age and communicates well at home. But there are times when her words just won’t work. When her anxieties take over and she is unable to communicate. Outside of home, without mum and dad for support she can find it crippling to use spoken language to communicate. I am a fluent communicator and able speaker but everyone can feel that anxiety at times and struggle to get the right words. Under pressure, with a camera filming you, faced with hundreds or thousands of eyes upon you, sitting close by someone you have strong feelings for but have never yet mentioned to them, in court having to answer questions in quick fire, meeting a stranger for the first time, and many other situations beside.

For Naomi we had a situation a few months ago when she came home on the nursery bus with tears sitting behind her eyes just waiting to fall down her cheeks and onto her clothes. Even with her language skills she was unable to tell us what had happened. So I held her, looked into her eyes and slowly said ‘show mummy’. So she went straight to her nursery bag and brought out her diary. In it was a card to say she had had her teeth polished at nursery that day. For two hours she had detested the taste of the polish in her mouth to the point she had felt sick. She didn’t spit the clumps out as she knows spitting isn’t nice. She had a drink, we got out all those horrid tasting clumps of polish and we shared a cuddle. She showed mummy the problem when her words would not come. And I was able to put it right and comfort her and show her all was well without using many words too. A hug and a smile go deeper than words ever can.

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Isaac can’t speak. Now and again, mostly when very upset, we will hear the occassional ‘mum’. We have tried, speech therpists have tried and many other professionals have tried. But so far the words won’t come. So he shows me.

He shows me he is hungry by going to the cupboard and getting a plate:

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He shows me he wants more by outstretching his arms:

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He shows me he likes something by touching it:

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He shows me he loves me..even when the words won’t come.

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I tell my children all the time I love them. But I also show them. I tell my husband I love him everyday too. But I also show him. And he shows and tells me too. This week marks our 15th wedding anniversary. Long before the wedding, long before we ever had children, before we even confessed our feeling towards each other we had a special moment. Our relationship started with a hug. An embrace that conveyed way more than any amount of words. No words can ever adequately convey the feelings and emotions of a first kiss. 15 years later there are still many moments of silent love. When the house is quiet and he makes me a cup of my favourite hot drink the way he knows I like it. When I am in a shop and see the book he has been looking for for months and I buy it as a surprise. When we have got through another day of appointments and stresses and screaming and that smile and hug at the end of the day says more than the inside of any greeetings card ever could.

When that smile and the light in the eyes shows love when the words won’t come:

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Cards are great. But sometimes there are no words to describe what you want to say. And sometimes you just don’t have words to start with.

So share a hug, send some flowers, smile, laugh together, treat someone, listen, spend time with people and show them you care. Actions really do speak louder than words. I know my children love me even though neither of them say. Even though one has the words and the other one is non verbal it doesn’t matter because they show me…even when the words won’t come.