HAANAGH’S STORY

I was working as a midwife in a busy maternity unit in Hampshire and life was good. We had a gorgeous little boy of 5 years old, Harry, and my husband and I decided we'd like him to have a brother or sister.....but our family of 3 became a family of 5 when an early scan showed we were expecting twins! We started to look towards welcoming our twin boys and all having a happy positive future. 

But things didn't quite turn out that way when Zachary and Reuben were born 3 months prematurely and as a result now suffer life-long health complications.

Zachary contracted meningitis at one week old and then again at six weeks old. He is now severely deaf with very little speech, is developmentally delayed and has Ataxic Cerebral Palsy. Reuben suffered a brain haemorrhage at around 7 days old which led to the Quadriplegic Cerebral Palsy he lives with today. Both twins fought hard for survival in the early weeks and despite their diagnoses have been quite inspirational in their strength, smiles and success to get this far. 

But life as a family is hard. It is hard that our world turned upside down as we had to face that our children have disabilities. It is hard financially as I had to leave my job to care for them 24/7 leaving my husband to work all hours as the main breadwinner. It is hard trying to explain to your son his brothers may have difficulty in playing with him sometimes. It is hard to stop worrying about the future and what it will mean for the twins. It is hard to live life in and out of hospitals, clinics, therapy rooms, jumping from one appointment to the next, having carer after carer come to your home. It is hard not really sleeping one night to the next. It is hard to just be a family when all of your time gets taken up in the spiral of their care packages and the next forthcoming treatment. We were losing ourselves. 

That's when Jennie’s Children's Trust came into our lives. They gave us the chance to get away from things and all 5 of us come to this little piece of tranquility in a beautiful part of Wales; a week of escapism where the children got to be children and not live under the umbrella of their diagnosis. They smiled, laughed, experienced the sea, the beach, the valleys, freedom, fun and we were able to recharge our rapidly decreasing batteries. It was like a sanctuary where the wonderful volunteers welcomed us with open arms; whose spirit, kindness, and enthusiasm were just as beautiful as the countryside around us. For one whole week we were able to stop, breathe and do what other families do, and enjoy each other rather than be encompassed by our new normality of stresses and worries. Time was on our side as we lapped up each possible second of fun and joy, which was fuelled and supported by the people there that make the trust the wonderful thing it is. As what it's done for us is let us be together, invest in time for our family where we could create memories for the future. Not memories of all things medical, but memories of smiles on our children's faces we hadn't seen much before. It's hard to say thanks when thank you doesn't seem enough, but Jennie’s Children's Trust created a little bit of magic for us that week and for that we will be eternally grateful.