Thirteen years ago I gave birth to my little boy, full of the joys of becoming a parent and filled with all of the dreams and aspirations for our lives ahead…. those dreams were shattered just a few days afterwards as we very nearly lost our boy to Hypoglycaemia. We spent the following weeks in PICU and HDU before finally bringing our son home, only to keep returning to the LGI as the extent of his injuries came apparent. Jack had been left with scarring all over his brain, resulting in him having severe cortical visual impairment, he cannot sit, stand, hold up his head, or use his hands. He cannot speak (though he can certainly vocalise and express his teenage strops ;) he is fed via a gastrostomy and has a very difficult to treat form of Epilepsy called Lennox Gastaut Syndrome which means he has 20-30 seizures a day of every different kind. All that said, he is the most loving and inspirational boy I have ever met :)
I remember how hard life was back in the early days. I felt consumed by grief and fear for what was to come. Friends and family didn’t always understand - how could they!!? Some people backed away and left me completely isolated and alone. Jack had a growing number of therapists involved in his care, physios, OT’s, speech and language, epilepsy nurses, community nurses, VI teacher, Portage worker, Specialist health visitor, neurologist, paediatrician ….. and they were great, always asking if I wanted to be “put in touch with another family” but I knew if I had to speak the words out loud it was going to make it real!
Finally I did speak to another mum. We spoke of Epilepsy meds and hospital visits, the hardest conversation I have ever had, trying to speak with that lump in my throat and hold back the tears. However, that was my turning point! I realised I wasn’t on my own, there are other families out there going through this too!
The next couple of years saw me leaving my job of 18 years and becoming a single parent, not how I had expected my life to go but Jack needed me more than ever. I recall sitting in Children’s Outpatients one day and looking at the other parents with small babies and a look of total fear in their eyes, wondering what the Drs would tell them next. I knew how they felt and wanted so say “Its ok, you’re not on your own.”
We had been told that Jack’s condition was life limiting, heartbreaking! Somehow I had to get my head, and my heart around that. For a while it did consume me, until I realised I was grieving yet my boy was still here! Still in my arms! This was not the time to grieve, but to make sure I do Jack proud, and give him the very best life I can. My greatest fear is to stand at his grave and feel I have let him down, which I have no intention of doing!
Ten years ago I happened to be in the right place at the right time and secured the backing to get “Little Hiccups” up and running. I wanted to bring families together so they would know they weren’t on their own and could support each other. We started with bags of toys and a jar of coffee, ten years later we support over 300 local families and offer a range of services!
We run Stay and Play every Thursday afternoon at Leeds Mencap, an Outreach Service, Hydrotherapy Sessions, Information and Counselling services and a monthly Family Fun Day offering families the opportunity to do activities such as visit local attractions, the cinema (which is always fun with feed pumps, wheelchairs, walking frames and excited children) Canal Boating, Bowling, Water Sports, Parties, Skiing, Wall Climbing, Photoshoots and even Indoor Skydiving!
We firmly believe that our children, no matter what their diagnosis, have the right to experience as much of life as possible and make oodles of many happy memories with their friends and family. Life is a journey and this path we walk certainly isn’t an easy one, however it is very rewarding and we consider ourselves blessed to be part of these special children’s lives and to help make a difference.