Our journey to Little Hiccups started in the right place at the wrong time. I took 7 month old Emily to a baby massage group at Headingley Children's Centre. I'd taken Rosy to a class when she was that age and thought it might be a good way to bond with my baby and relax her. Trouble was she was already too relaxed! Seizure activity, especially at night, left her sleepy and lethargic and throw in a global development delay, visual impairment and her tendency to switch off in new surroundings and I may as well have practised my moves on a rag doll. I had already felt the need to explain her behaviour to the other Mums but faced with their bright, alert babies who were keen to be on the move, Emily's differences just overwhelmed me. I should have made my excuses and left but instead I lay next to my beautiful baby girl for the 5 minute relaxation and fought back the tears. Once the class finished the tears flowed and the Children's Centre staff were there to mop them up and point me in the direction of Little Hiccups.
A few weeks later I sat in the same building (well, portacabin!) but I might as well have been on a different planet. My shoulders dropped, I stopped making excuses for Emily and I could even let my false smile slip - I'd found Little Hiccups! Ok, it wasn't an easy step to take as a big part of me wished that we didn't really belong there and we'd wake up to some magic cure or even see Emily 'grow out of it.' And I was disappointed that I didn't meet another mother with a daughter identical to mine who had all the answers. But I did meet families with lots of different needs but who could more easily relate to the desperate feeling in the dark at 3am when you wake to the sound of your child having a fit; the over-familiarity with LGI; the joyless hours spent googling all conditions known to man; and the despair when the postman strides past your house and you have to wait at least another day for that consultant's letter (that only reduces you to tears when it does come because, however obvious something is, there is still a chance it might not be true until you see it in black and white).
Since then we've had some great experiences thanks to Little Hiccups and made some wonderful memories for the whole family. Emily's big sister Rosy has always been welcomed and benefits too. The journey to Little Hiccups may not be an easy one and the new outreach service will certainly have to guide some along the way. But now we've found them we need never be alone again.
Written by Helen Burns