Lucians Story

Created by Katyia on 20/11/2012
Thank you for all coming this site to celebrate the life of our son Lucian Haydes Johnson, Our little boy who has made such an enormous impact on so many people’s lives in such a short time, the memories he has given us all will last a life time, all his hair, his beautiful face, his nose or the way he shook your hand. The mutual love between Lucian and everyone will be everlasting. But between Lucian and his mum, there is no stronger bond. Lucian was a fighter just as his mum was. From when we found out we were pregnant, I remember Katyia started waving a stick at me which she'd just we’d on as I ran up the stairs, I found katyia smiling and crying at the same time. At first, as you can imagine we were scared, really scared but we were also excited about the adventure ahead. We found out at our 20 week scan there could be problems involving Lucian. So after a large number of scans including MRI scans, traveling to numerous different hospitals, meetings with Obstetrician’s, Professors, Neonatologist and Neurologists we found out more about the condition of Lucian’s brain problems and his disability. Needless to say we were heart broken. But we continued and accepted that whatever problems there may be, together Katyia and I could face anything and we would do anything for Lucian. Katyia went through, 6 amniotic drainages averaging 2 and a half litres a time as this was best for Lucian, only pethidine would help with pain relief, but to be honest it was amusing seeing her dribble each week. Once in hospital we were ready, come on let’s do this! but it took a lot longer due to emergencies and a certain team of doctors and specialists needing to all be free at the same time which took 7 days. Labour ward, here we come! Katyia then received jabs, drips, epidural, 3.8 litre drainage, waters broken in the theatre a further 5 litres, contractions, pushing, episiotomy and forceps, something that still makes certain parts of my body tingle when spoke of. At 03:17am weighing 6lb 10 Our stunning Lucian was born on 23rd October and this is when our baby boy started his own fight. He arrived struggling he was rushed round to neonatal to be put on a ventilator to help him breathe also x-rays and tests etc. They worked on him for 4 hours, Doctors came in advising he only had minutes left to live, We were numb distraught heartbroken as soon as we got there and saw his little body fighting for life our whole world fell apart! But as soon as they put Lucian in Katyia’s arms he took to the ventilation unit, they have no medical explanation as to how he did it, he completely defied them all whilst in our arms but not just for a few seconds or minutes he managed to defy them for another 5 hours and fought long enough to have cuddles and kisses with his mommy and daddy. He even managed to fight to meet some other family members that illegally drove at high speeds just to get there. At this point he started struggling again, this is when the doctors said there was nothing they could do that’s when by one look between Katyia and myself we knew then everyone had to give him there last kisses as we knew we needed to let him go, they put the screen around us and they took away all his tubes then finally with Katyia holding him they removed the ventilation tube, even with our hearts breaking and not wanting to do it we knew in the depths of our souls we were doing the right thing for our son. We fought and gave everything for him and in his short time he fought and gave everything back to us, our little boy Lucian gave us that little bit of time we needed, memories that will stay with us for eternity and for that we wanted to take his pain away and thank him, The peace, contentment and amount of pure love that engulfed the 3 of us in that room will keep us moving forward for the rest of our lives. The love between the 3 of us some people don’t receive or even feel in a lifetime. Were so thankful to have had that time with Lucian for those few hours and words can’t describe just how proud we are to be the parents of such a beautiful, strong willed little boy who through our tears, stories and memories will live on in our hearts forever! Daddy x