I have had this post in draft for a couple of months. I was waiting for the right time for our family to share it. Lately, Leo has been doing so well and we are feeling positive. We don’t shout about Leo’s disability but we don’t hide it either. It’s just something about him. I have encountered ignorance about disability (and confronted it) for almost my whole life and I think the only way to counter it is to be open about the realities. If you understand someone’s journey then you will have more empathy. This morning I learned it was World Cerebral Palsy Day and I felt that it was the time to share this post. I am a lot less angry now than I was when I wrote it.
I know that people reading this will be from all walks of life, will do lots of different types of jobs and will have their own challenges to deal with. I hope that reading this will make them mindful that they don’t know what people are dealing with in life and that kindness should always be the default response when faced with someone different from you.
This summer, exactly a year to the day we were given the devastating news that our son’s brain scan was showing evidence of a brain haemorrhage, it was confirmed that he has Hemiplegic Cerebral Palsy. That means the right side of his body is impaired by the damage done to his brain. We knew this was a possible outcome but had remained optimistic. The signs over the last few months had been hard to ignore and my fears of these two words were realised.
Leo, the boy who had overcome all the odds to be born at 25 weeks and 5 days and not only survive, but thrive, breathing independently and requiring only dietary supplements on discharge from hospital three weeks before his due date. Leo, our baby who one week before his due date was undergoing surgery so a neurosurgeon could fit a shunt that would drain excess fluid that wasn’t been absorbed in the ventricles – another side effect brought about the bleeding on his brain. Leo, the amazing child who got through his first winter without a single bug. Fate was not yet done with Leo.
I was so angry. Leo had suffered enough and my family had more than its fair share of experience with this disability. My sister also has Cerebral Palsy. The brain damage she experienced was greater and she has the quadriplegic form of the condition where all four limbs are affected. Her life is fulfiling and she finds pleasure in social activities and holidays. But these qualities are a testament to her determined nature and the quality of care her parents provide. I don’t think they would mind me saying, this is not what they would have chosen for her. I absolutely did not want Leo to face these extra hurdles in life.
It is natural that when people find out I have a one-year-old boy they ask me if he is walking yet. I am always polite and say ‘not yet’ but inside I am screaming. Internally I am seething that my darling boy is not reaching the milestones that would make his life even more fun and adventurous. I see other babies around me, those born around the same time as Leo, thriving and exploring and climbing and ticking off their milestones like a shopping list. We have physio, a special feeding chair, a bath aid and appointments. Life is by no means miserable. Leo is an utter joy. A very special and loving boy. He is sociable and friendly. He has a smile for everyone and he has learned to clap his hands. He has mastered sitting and is working hard on standing. We are so proud. My love for him floods me and spills over to a joy for life. I wish he had escaped this condition, but I know it is only one part of his story.
A positive aspect of Leo’s diagnosis is the amazing care he receives. He still has neonatal input as well as a paediatrician. He gets physio. He has occupational therapists monitoring him and the equipment he needs. Best of all, he is attending a special needs nursery where he gets specialised input and is supported and nurtured to fulfil his potential.
And for me, that’s what my journey as a mother to Leo is about – taking care of the practical things that will help him. Sharing my utter belief in him that he can reach his potential, inspiring him to have confidence in his talents and providing the unconditional love that will help him overcome anything that life throws at him. As with anything in life, attitude is half the battle.
On World Cerebral Palsy Day I have been heartened by media campaigns showing the wonderful lives that people with this disability have. I have experienced this truth with my own eyes. The world is imperfect and some children are not nearly so lucky as Leo. Being born in the developed world to a family that can support him has made him fortunate. He has a mummy and daddy who will do everything in their power, and fight hard when something is not, to help him. Sadly, I know that sometimes a fight is needed.
I am at the start of this journey with Leo, my husband and the friends and family that have carried us this far. We will move forward and we will love the life we are blessed to have together.
If you want to understand more about Cerebral Palsy, I recommend this website.