Wednesday, 10 August 2016
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.
Wednesday, 3 August 2016
The school holidays are in full swing, the children are arguing with each other and I am exhausted. My eye has started to twitch from the stress of looking after the twins single handedly. I haven’t cried yet so I guess for now that’s a positive in an otherwise demanding situation as a Carer to twins with learning difficulties.
This morning Facebook flagged up one of those memory reminders. It is five years ago today that my daughter came home from hospital. She spent the first 6 months of her life on a neo-natal unit and then a further 7 months on a gastroenterology ward that specializes in caring for children with short bowel disease and parental nutrition needs.
A premature birth, followed by an infection called Necrotizing Enterocolitis (NEC) led to my daughter needing a part of her bowel removed. Having contracted NEC twice in the first three months of life, Grace failed to thrive and needed to receive all of her nutritional needs via a Central Line in her chest and a gastrostomy feeding tube in her stomach.
I don’t think that anyone really prepares you for life as a Carer, and if they did we would probably fall apart at the thought of spending the rest of our lives caring for someone we love.
As the weeks turn in to months and then years you find yourself in your quiet moments grieving for the person you once were and for the dreams you once had.
Yes, I was prepared by medical staff on a practical level for what I would need to do when my daughter came home. I learnt how to put up an intravenous feed using a sterile procedure, I learnt how to give I.V anti-biotics and CPR. I can change a gastrostomy feeding tube as skillfully as any nurse. I can do those practical things, but no one prepares you for living on the edge of uncertainty. It’s a very lonely place, and the emotional roller coaster you feel is enough to send you in to a downward spiral of negative feelings and behaviours. But some how I am still treading water, my head is still up although there are days when it feels as though things will never change.
When my twins were babies much of the caring probably appeared to be the same as any other mother with two young children if you don’t count all the medical interventions. Today however life as a Carer is very different. There is some progress as there are no more intravenous feeds, but at age six my daughter still has gastrostomy feeds, is still in nappies, has neurological delay, and behavioural issues and more recently has gone from febrile convulsions to developing epileptic seizures.
My son had a stroke before birth and while he has exceeded most people’s expectations in terms of his development he now displays behaviour associated with Autism Spectrum Disorder, along with some neurological processing issues.
Getting out of the house is getting progressively harder, not easier. Part of me misses those days when I could just put them in the pushchair and go for a walk.
When the twins were small I got 8 hours of respite a month. The week that Grace’s Central line was removed that was dropped to four hours a month and with County Council Budget cuts the remaining respite was taken away in June 2014. I have since had to fight to get back some respite care and it has taken until this last month to get it back. Four hours of respite a month based on my daughter’s needs and not my sons. My next great challenge is to fight for the care he needs as it is becoming almost impossible to go out on my own with both of them due to their behavioural difficulties.
Yesterday my daughter wanted to look at videos of herself as a baby. I look at myself in those films and I look far less burdened than I do now. The stress is starting to show on my physical wellbeing. I dare not consider how I feel emotionally. I am married, but our relationship is strained by caring for two children with disabilities. We barely know how to be around each other any more and there is no personal space to discuss our feelings or personal needs. There are awkward silences, arguments about how to parent, neither of us wants the other one to feel the way we do, but circumstances have driven us in to a situation where our relationship is at the bottom of the care pile.
Five years ago we had on rose tinted glasses, we lived in a dream world where we thought things would be better by now. Together we seemed invincible but not anymore. We have grown tired of our circumstances, tired of each other, tired of parenting, tired some days of our very existence. But we are carried forward by the love of our children, the smiles on their faces, and the laughter they bring. It’s those moments as a Carer that you hold on to when the darker times threaten to consume you.
Today while the children were playing in the park I felt the warmth of the sun, took in a deep breath and reminded myself how lucky I am to be alive. I felt a tear roll down my face as I let go of some of the stress I was feeling about my life circumstances. Life is a gift that is so easily wasted in our moments of sadness.