Our son Freddie was born with a rare neurological condition called congenital bilateral perisylvian polymicrogyria. With only about 1 – 200 cases diagnosed worldwide – still so little is known about the people affected with it. We were told during our pregnancy that we were to have a brain damaged child and, whilst we would never judge anyone else for doing it differently of course, we were determined to go ahead with the pregnancy. We felt that we had enough love to conquer whatever was coming our way and that, for us, life didn’t have to be traditionally perfect to be worth it. We felt every life is valid and every life is for a reason.
I have to be honest, however this wasn’t what I expected or dreamt of when, as a child growing up and thinking about the future, I drew those little pictures of Mummy and Daddy and a huge yellow sun (that always shone in those days) down upon a little boy and a little girl a pink dog and a purple cat. In those drawing there were no IV lines, no ambulances, no life saving medications and definitely never any distraught parents whispering prayers by the hospital bedside at midnight willing their desperately ill child to pull through because tomorrow’s destiny hung delicately in the balance. But I thought, if I can’t do this, if I can’t be the advocate and this little being’s person – then I’m just no good.
So we fought the medics and ignored their advice and welcomed Freddie into the world eleven and a half years ago. And we’ve never regretted that decision for a single moment and never a day goes by when he doesn’t reward us in some way for that. Someone once told me that being a parent is allowing your heart to run around on the outside. Well, being a parent to a child with special needs is like asking it to run a marathon on one leg, blindfolded along the edge of a cliff – every single day. Motivational speaker Josh Shipp said – you either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person or you allow it to tear you down. The choice does not belong to Fate. It belongs to you.
Freddie’s condition is very rare – as I said and although we were prepared at his time of birth to face whatever was thrown at us – there were times when we felt lost and as though we were given this diagnosis and then released back into the world with no answers and very little in the way of professional back up.
So then we did, what so many others have done before us and obsessively began to look up everything we could on the internet about this little known condition – only to read the worse case scenarios time after time. We came to regret that very quickly and decided we would do our own research through the things that our own child was to teach us. We leant pretty quickly that if you let them those stories stick and the best thing you can do is to stay away from them because in the meantime there is this tiny explosion of love wanting and needing you instead.
You learn also to pick and choose your battles carefully and to rejoice in the all the wonderful things there are about this little person that you loved and wanted because apart from that label (that will never leave you) very little else has changed. It’s been said that life may not be the party we hoped for, but while we’re here we might as well dance. When you accept that this life and your grief isn’t something you get to dip in and out of as you choose, you will begin the healing process.
Freddie is severely disabled and the everyday things we all take for granted – such as sitting, walking, talking, using his hands to play and eat and so on are extremely hard for him and his condition renders him dependent on others for all his needs. Freddie is locked into a world where he cannot communicate in the conventional way and we see his frustrations with this and with us when he can’t make himself understood. But we also see his delight when he makes a breakthrough and can successfully explain what he wants.
People suffering from Freddie’s condition develop symptoms at different times and with varying degrees of severity. Some are profoundly impaired, some develop cerebral palsy in addition and some – like Freddie are hit as infants with debilitating and life threatening seizures that ruin their young brains before they’ve even had a chance to do anything with their short lives.
During those early years, when we were new parents finding our way, some mornings just about managing to put one foot in front of the other – a fantastic and truly empathetic occupational therapist (Tracey O’Brien) suggested that we contact a lady called Andrea who had just set up a group called Play Skill. We did so and I can honestly say during that relatively short conversation that for the first time in those two years we finally felt we had found someone who genuinely understood us. And more importantly than that, who cared.
After an initial assessment, we began to attend the group there and very quickly we firmly came to believe that this was one of Freddie’s best possible chances of developing and achieving within the restrictions and constraints of his very changeable and complex condition. Andrea and her team had specifically developed tailor made programmes to meet each child’s individual needs. There was no miracle cure and we knew it would take time and needed concentrated effort from Freddie and from us, as we learnt with him and could then transfer these newly found skills into everyday life.
Play Skill is an amazing place. It is so much more than a specialist and therapeutic play group. It is a community and a family. They believe in Freddie and all the children 100% and always cared for him as one of their own – and I have to say all that comes with a disabled child – the dribble, and reflux and pooh and runny noses is not for the faint hearted. We knew that when we went off there each week he would return exhausted as was is pushed and encouraged and helped to follow a very strict programme – delivered by specialists. But always with love. Play skill were the people who walked in when most others walked out.
I’ve often been asked to explain what it’s like to be the mother of a severely disabled child. Think of a new born baby and how dependent they are upon you for everything. Then jump forward several years and imagine that you are still as sleep deprived as you were when they were first born, because their sleep pattern is still so erratic, you still have to feed them and eat your own dinner cold every night because they can’t feed themselves, you still have to change their nappy – but a nappy that is soiled by a much older child and eventually an adult because they cannot tell you when they need the toilet. You still have to entertain and stimulate them constantly because they have no independent play skills and will become bored and frustrated quickly. You still have to be responsible for making sure they have enough to eat, drink, and are warm enough in the winter and cool enough in the summer, because without you ensuring all these things are equal they will be cold and hungry or thirsty. And you still have to take them everywhere with you at all times because other people are too frightened to deal with their complex health and medical needs. Think of having to make sure you set the apnoea alarm in their bed each night so you can spring into action if it sounds to tell you they’ve stopped breathing and you need to begin resuscitation and call 999. And imagine that when you go on holiday or away for the day you look for the nearest hospital and not the nearest beach because you can only be a certain amount of time away from life saving treatment. Think of all the lifting and carrying and bathing and the equipment and medication needed just on a simple trip out to the park. Think of the compound operations they must face and the high risk of surgery on such a vulnerable and delicate disposition. And operations that are crucial life sustaining or life changing with huge amounts of rehabilitation. Think of always having to be their eyes, and ears and voice and advocate. Think of all of that and you will just about skim the surface of what it means to have a special child. However – that said, we wouldn’t change our beautiful boy for the world.
Freddie has taught us so much. He has shown us a new world where we have learnt a foreign language usually only found in medical dictionaries and we have become experts in a condition that we never knew existed. We have met some wonderful people and have been to some wonderful places that we never would have been to. He has taught us that managing our ever changing expectations will always be our way of life now. But most of all we have learnt how strong the human spirit can be in the face of adversity.
We are so blessed with all of our five children and amongst them we have an amazing and extraordinarily different little guy. He is phenomenal – really – a juggernaut of love. I know his condition and stubborn and intractable epilepsy may have ravaged his infant brain and taken his speech and many of his abilities from him and denied him his chance to dance and run and jump in the world but they left something else – an extra helping of intrepid stoicism, courage and fortitude in their place.
What has become so difficult for us in the darkest times is that an innocent little boy who has nothing but smiles, laughs and love for everyone has been repaid with a broken brain and a scary and uncertain future. But, as I said, you come to accept that life must go on and the world doesn’t stop (or even pause) for your grief. There are times when we’re so exhausted from being up night after night, so worried we’re doing all this correctly and all we can for him, so lost. And then he’ll look at us and he’ll smile and he’ll laugh. And that laugh is telling us everything. It’s saying – it’s okay. Whatever you need to learn you will learn. The strength you think you need and don’t have will come from somewhere. Don’t lie awake at night and worry about me and my life and how I will survive in the world when you’ve gone. Just live for now. For today. Love me today and for now that will be enough.
I read something during National Cerebral Palsy Awareness week earlier in the year entitled what CP cannot do which I wanted to share with you. What CP cannot do. It cannot cripple love, it cannot shatter hope. It cannot corrode faith. It cannot destroy peace. It cannot limit friendship, it cannot damage memories. It cannot silence courage and it cannot control the soul. It cannot steal eternal life, it cannot conquer the spirit and it cannot delay joy.
Mother Teresa once said, ‘In this life we cannot do great things. We can only do small things with great love.’ And our precious Freddie reinforces that belief every single day.
Finally, the point I’m trying to make here is that although life with a disabled child is exhilarating and rewarding at times it is also unimaginably hard. The challenges and obstacles are often unrivalled and feel insurmountable. And it’s only thanks to the support of people like Andrea (who for what she’s done and is still relentlessly doing for disabled families in setting up Play Skill is an absolutely incredible person in my eyes) and to all of you that shed some light at the end of a dark tunnel. With that support we feel ready to regroup and carry on. Without it I know we’d stumble and fall. Thank-you for supporting and helping children like Freddie. Thank-you for ten years of belief and faith in these children and for striving for a better life for them and their families. Your kindness and generosity makes such a huge difference. It goes such a long way towards helping them all live the fullest and most complete and independent lives possible. I know if each and every one of them could thank-you in person from the bottom of their hearts – they would. Thank-you.