Today is World Cerebral Palsy Day. This is a day when people can raise awareness of the condition, when myths can be expelled and maybe we could learn a thing or two. I never knew a lot about CP before my twins were born, and certainly I cannot profess to knowing anywhere near everything now! There are many types of CP and every person experiences it in their own individual way. The twins’ life with CP is just one tiny fleck of a huge umbrella of a condition that impacts a huge amount.
I have learnt a lot along the way this past 6 years, but I have a huge amount yet to learn and to take on board. To excuse myself for using such a cliche, it really is a journey that I’m on with my little guys. A massive learning curve in which you get a sociology, psychology, biology and PE course along the way! Right from the start you get to become an expert in your own individual field, knowing your baby’s subject matter in the greatest of detail, helped along by the medical professionals that guide your path. However, you become the person who knows it far better than a text book could ever teach – mainly as you have the professor of it all living right there with you 24/7. The biggest teacher for us has been the twins themselves.
What have you two taught me the most? What has been my biggest lesson so far? This is a very simple question to answer. At the start (and to be fair, also continually along the way) there are a lot of people who told me how hard it would be. They informed me what you guys may never do, or achieve, and how things would be so very, very different.
Well yes, things are different. There are tricky days when you feel lonely and frankly, terrified. There are days when you feel you are climbing a never ending mountain. You are hoping that the summit will come, yet in many ways you know even then, there are challenges the other side. There are days where you’d love a duvet day to hide yourself from your worrying world. BUT, amidst the dark days there are far more days of light. Days which are easier to rid yourself of that duvet.
Because….what no one told me at the very start was how much joy you would bring me. How much you would transform and contribute to my life in the most positive of ways imaginable. How you would enter my world and like a whirlwind change my perspective on life and let me appreciate the most fundamental yet wonderful things. No one told me how I would become the most protective of lionesses and fight with an armour fit for a warrior to get you what you needed to be your most beautiful selves. No one warned me that this life doesn’t just come with heartache, it comes with a heart that grows so huge out of love and warmth and pride I could burst. No one told me how rewarding and fulfilled I would feel. No one told me how much love you would give me back….and how incredible you would become.
No one told me it would be ok. It’s more than ok.
So, on World Cerebral Palsy Day, I want to thank the twins for being the best (and most awesome) teachers I have ever had. In turn, I promise to be a model student.
I want to share something again that I wrote a while back, which seems appropriate for today. It’s my promise to my twins.
‘From the beginning to the end….’
I was your home: as you grew into two tiny babies, sharing the space before you were born. My commitment to you started then. With every single scan, I willed for you to still be there, fighting the odds, your little hearts beating. I was your pin cushion for all the injections and drugs that would keep you there just a few days longer…..I feel the guilt my body didn’t let that happen.
I was your companion: in the first few months, a vigil at your incubators. Sitting between you, looking at you through the glass, perfection in tiny form. I hope you didn’t hear my tears as you became poorly…
I was your hope: as you had a difficult start to life. When the doctors words were full of doubt, my hope for you stayed alive. We won’t ever be without hope, as that is what keeps us ticking over.
I AM your belief : that with all the help we give you, you will be happy and achieve what you are destined to. When I am knocked over by bad news from one of the many professionals we see, I get up again, eyes cloudy with tears. You give me the reasons to get up again. You teach me what’s important in life. I don’t sweat the small stuff.
I am your strength: though it sometimes feels my legs may buckle with the worry and my heart hurts, we carry on – together. I’ve had to pluck courage and strength out from somewhere I never knew existed.
I am your protector: when people stare at you or say things that aren’t very pleasant, I shield you. I’ve grown a suit of armour that protects us all. I fight for you when things must be done, must change, are needed. I will win your battles.
I am your voice: you cannot speak the words but your eyes tell me what you think. I am your interpreter as I understand your sounds which the rest of the world cannot. You speak through me.
I am your message: that disability will not stop you, even if it means we have to do things a bit differently. To me, you are perfect the way you are though I would take away your problems in a heartbeat to make your lives easier. I wish I could have your struggles instead.
I am your nurse: to detect your pain and every day give you your drugs. I am your clown as I make you laugh to make the medical stuff a bit more fun.
I am your biggest fan: when you do something they said you’d never do. Which is quite often. You amaze me. Yet my heart breaks a tiny bit more every time I think how hard things are for you and how life should’ve been. The ‘what if’s’ eat me up.
I am your provider: to give you everything you need and do the things you can’t do for yourself. I will wash, feed, change, clothe and play with you. I will walk a thousand marathons if it gets you what you need. You will never be without.
I am your comforter: through your pain, upset and frustrations, day and night, I will hold you and wipe your tears. I will cry with you.
I am your admirer: for your spirit and determination and your beautiful faces. I love you.
I am your mummy: I will always be there for you. when the time comes when I’m not here any more, I will watch over you..
….and I will become your Guardian Angel.