Wednesday, 10 August 2016

The Kindness of Strangers

I had today planned out, but of course the plan and the actual day don't always come together. 
My daughter needed to be at an Osteopath appointment at 10.45am. Mornings are always a challenge as both twins struggle with planning and mapping out in their minds where they are going. Plus there is the breakfast routine and enteral feed to do before even stepping foot out of the house. Most of the morning from 6.30-9am felt like I was stuck in the groove of a record, with the repetitive question of 'where are we going'? I answer then 10 minutes later, one or both of them ask again. 
 I was going to make the day a little easier by leaving my son with his Nana & Grandad. Although elderly both can just about manage an hour with my son if he is plied with biscuits! Unfortunately my mum called to say she was sick and so my son couldn't visit. My mother's voice was distressed on the phone, 'I'm letting you down' she said. 'It's Okay, I will cope' I said in a reassuring tone. But deep down I was terrified of the prospect of coping alone again knowing full well what would happen with a change to the plan. For a little boy with a brain injury, changes of plan have emotional consequences. 
I break the bad news, he screams uncontrollably and refuses to leave the house. I get a note pad and draw out a new sequence for the day, adding in a bribe. Through gritted teeth I say ' I will take you to McDonalds'. I truly hate the place but it is the one place he will sit still in long enough to eat anything. I guess using a McDonalds five times a year won't mean I go to hell, although I can hear the tuts at my parenting skills as I type! 
My son looks at the sequence and agrees to get in the car. My daughter by the way is already standing at the doorway trying to put odd shoes on and teasing her brother that it's her turn to get in the front of the car. 
Disoriented by my choice of carpark my son is anxious before we get through the door of the Osteopaths. When we arrive they head for the toy corner in the waiting room and proceed to demolish the box of Lego and argue at full volume. I am desperately trying to get them to stay quiet as other people stare through gritted smiles! Believe me! In my head I am screaming, 'Just shut up'. I want them to behave 'normally' but that never happens. One child can't share, his brain just doesn't let him,the other is six with the mental age of three so everything is picked up and dropped and argued over anyway. 
A therapist comes out and whispers in the receptionists ear. Next minute we are escorted up to an empty treatment room where the receptionist glares at the children and says 'try to be quiet'. I of course am left in a place of shame! Why ? Why do I feel like that, why does society make parents of disabled kids feel like that. At what point did the world become so cruel? The truth is it's always been that way but I never noticed before, because I wasn't a parent then to a child with Special Needs. I was one of the blissful ignorant. 
We get through the appointment thanks to a Kindle and Minecraft then it's time for me to make good on my promise of a McDonalds. My stomach wants me to put my fingers down my throat before I've even walked through the door. As a vegetarian I drink the water and find there is actually a salad bowl and coffee, no Carers day is complete without a gallon of coffee. Happy Meals in hand we search for a table. It's heaving and there is no room. We miss the last clear space as my son decides to empty half the ketchup pump on to the counter while an impatient woman tuts behind him because he is taking so long and eventually pushes past to the barbecue sauce. 'Seriously is it that great you have to be so rude' I am thinking in my head as I glare. So we wander around the restaurant, with my son and daughter anxious that there is no where to sit. Empty spaces but no one willing to share. Do you remember the days when people shared, rather than spreading their bags and laptops out, so that a one person meal take over a table for four! 
Just when I was about to give up and say we should eat in the car a lady with a young boy catches my eye. 'Sit with us' she says with a smile. What a relief I hear myself say, as I worry slightly about the twins ability to sit with strangers and the fact that my Incontinent child hasn't been for a poo in four days. I remained hopeful that we could get through a happy meal and stay happy. It turns out the lady had worked with children with special needs, so perhaps on one level she had a sense of our complicated life. We chatted, the boys talked about Minecraft and Transformers whilst my daughter was distracted by a woman who was giving out balloons. She caught her eye and soon enough I was juggling a cup of coffee and two balloons. 
The encounter was small but a precious moment because we sat there just as two women with their children making conversation about life. 
There are days when I am not compassionate to myself, in fact I am down right cruel, I punish myself for not coping better, for not being the perfect Carer or the perfect Mum, for not being the perfect Wife. I sometimes need reminding that I am okay just as I am. The kindness of a stranger sharing their table with me and my children was a reminder today that not everyone see's my family and stands in judgement. 
The second kindness was a voicemail message left on my phone ' Hi Kusuma, your name was mentioned yesterday. Lots of people wondering where you are and missing your valuable work. No pressure but you really are missed. We hope you can come back soon'.
Another reminder that in my role as a volunteer Chaplain I am wanted, I am accepted just as I am. I wander around the wards not knowing if I really make a difference but I guess I have made more of an impact than I thought. A gentle reminder today from Amida that my faith as a Pureland Buddhist is always there. Even when I am tired, when I don't feel compassion  towards myself, Amida calls on others to show me I am still loved, I am still worth more than I think I am. Amida loves us Just as we are....really? Yes really, just as we really are. And sometimes it is the moments of acceptance from strangers and work colleagues we barely know that offer more insight in to who we are than the people we think are closest to us. 

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