“Yes, you feel sorry for yourself and you think ‘why me?’ …but you realise you are not the only ones going through this and although it may not seem like it at times – you will get through…”
My name is Kirsty and I am 38 years old. I am a single mother of 2 boys, 14 and 10. My eldest son Jacob was diagnosed with Cystic Fibrosis a few weeks after birth. Along with CF, he also struggles with anxiety and depression.
I believe my life has changed greatly since becoming a carer. I had to quit my job after my son was diagnosed so I could become his fulltime carer. Within time my relationship with his father broke down from the daily struggles and stress we always seemed to be facing. Sometimes I definitely feel like I am not the laid-back, carefree, happy person I once was before the diagnosis, but now a person who constantly worries about what the future holds for my son and his health.
I always believe I was a strong person before becoming a carer, but without a doubt – the strength you find when you are faced with a diagnosis is amazing. When my son is well and healthy, it gives me no greater joy to know that I am doing a good job of keeping him this way.
My greatest challenges are probably that of feeling like I’m doing it all alone. A single mother for 9 years – I don’t get a whole lot of reprieve.
I also find hard is that one minute my son’s health is good and things are looking up, and then the next he is sick and everything seems doom and gloom again. Having a teenage son that battles with you constantly about doing physiotherapy, taking tablets, taking medication is a daily battle. He fights about absolutely everything he needs to be doing to ensure his health and it is very draining. If he was more compliant – this would definately make my job a little easier!
I think sometimes medical staff tend to treat us on occasion as if we are just another ‘number’ and not actually people. We (and our children) are not all the same nor are our needs – and what is best for everyone else may not be what is best for us. At the end of the day – we know our children better than anyone else and sometimes we do know best. I feel that perhaps they just need to listen to the parents/carers a little bit better.
I remember the day we recieved the phone call telling us that our beautiful perfect little baby had this horrible disease that I had heard about, but knew nothing about. Our whole world came crashing down. How would we cope? What would we do?
You find the strength!
Yes, you feel sorry for yourself and you think ‘why me?’ But our turning point came when each time we went into hospital and we saw other parents with babies/children all battling their own issues even worse than ours. Somehow it makes you realise you are not the only ones going through this and although it may not seem like it at times – you will get through.