Wednesday, 3 August 2016

Five Years Of Caring

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.

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