In December 2009 I gave birth to my little miracle. Like any new mother I was besotted, and wondered how I had created something so absolutely perfect.
At times it was hard and we struggled with feeding. That’s normal, right?
At 4 weeks he was still jaundiced. That’s normal, right?
He cried constantly. That’s normal, right?
He continued to lose weight and after a whirlwind of hospital appointments, tests, biopsies and procedures, my perfect little man was diagnosed with a rare, life threatening genetic condition which saw him battling a heart condition and liver disease. We had never heard of the condition and the lists of facts and figures on the internet were terrifying.
I did what any mother would do. I ferried him to hospital appointments. I gave him medication. I held him all night when the itching got so bad that he would scratch until he bled. I wretched making up special formula that smelled atrocious knowing it was the only thing that would make him gain weight. I gave up full time employment and sacrificed my career to take a part time job that would fit around his care…
…and I worried.
I worried about his health. I worried about money. I worried about never getting a break. I just worried.
Then I got a new job at a small charity called Carers Lewisham. It changed my life.
It turns out that none of this is normal, and while I’m doing what every mother would do, it’s not what every mother does do, and there’s a name for us.
There is help out there. Help with accessing benefits, help getting a break, emotional help, counselling, specialist support, coping strategies, employment and training advice and so much more.
If I could offer one piece of advice to anyone in a similar situation, it would be to access support. Now. There are many carers centres around the country that, like Carers Lewisham, provide a wide range of support for people who, unpaid, care for or support relatives and friends who have mental or physical disabilities or illnesses.
If you live in the London Borough of Lewisham and think that you may be a carer, contact us to register and start receiving the support you need.
Administrator at Carers Lewisham