Be kind…always

It’s taken a while to write the next installment of our story, so much to say but no idea where to start. In honesty I don’t think we have fully understood what has happened ourselves, we have been carried along on a wave of activity without stopping or thinking. It’s been hard, at times it’s been a fight but it kept us busy. Charlie is wonderful and his achievements bring joy the like of which I have never known before, but I feel drained. I have felt I should cope better, in fact I end a lot of statements with “he’s fine, I’m coping”, that’s not strictly true. He is wonderful but he is not fine, he still has a long way to go and I may be coping (just) but I seem to wake and go to sleep with a constant headache. I feel tears are unnecessary and feel ashamed to cry, like I’m being a bit of a drama queen. I’m spinning so many plates I could be in a circus and the fear of them falling is terrifying, just one mistake and it all topples down. I recently had an unexpected bit of clarity, it all stemmed from a conversation which started as most others had, I had planned in my head to explain to someone I was aware I was anxious but I was managing it and it was fine. It seemed simple, so easy to say in your head but what came out was very different. I felt my voice break and no matter how I fought it my eyes filled with tears, I couldn’t speak, I couldn’t stop the tears, I sobbed. I sat and explained to this stranger my inner fears, that my baby was ill, that he would always be ill and that I was petrified to lose him. I explained this and the delays and the constant worry that I would again miss something leading to devastating outcomes. I explained the pain I felt at the struggles he faces and the absolute joy he brings. When I finished I apologised, repeatedly, for my dramatic outpourings and she said something new “you need to be kinder to yourself”. So simple were the words and I must have looked confused, I was not the one suffering why should I deserve kindness? She asked me to imagine another mother telling me of her child’s brain surgery and the impact of that on their life, would I think it strange that she should cry? Then I realised, what has happened isn’t just a bump in the road it is life changing and some days my heart breaks for the situations he finds himself in, other days I burst with pride and other days I watch him like he is a ticking bomb. My emotions are heightened at all times. It’s hard, I think I now realise it’s ok to say that. It’s hard to see him struggle with sensory overload, we do what we can to manage this and help him but it’s not always easy for him. It’s even worse to see the people around him judge or pity. A very busy elves workshop on Christmas eve led to a very emotional little boy, he cried, he wanted to run away and there was nowhere to go. Daddy held him, he sobbed and fought his embrace, it was heartbreaking but what was worse was the row of mums behind nudging each other and looking on as he struggled. I wanted to cry with him (I did later) I wanted them to know how hard he worked, how wonderful he was, I wanted to scream “he’s had brain surgery”. I know you can’t see his scars and I can’t give out a short chronology of his past to everyone (nor would I want to, brain surgery sounds awfully dramatic when just dropped into conversation) but I hope if their children are ever afraid or upset that there is someone kinder around them. People judge or worse look with eyes of pity, that look of “thank goodness it isn’t me”. I hate to read the various professional reports or acknowledge his massive developmental delays, it kills me he can’t tell me when he’s in pain. I can’t expect people to understand, he looks “ok” so how could things be bad. I can’t explain the cloud that always follows us, the fear of shunt failure. I can’t describe the terror when I see him fall (as any toddler does) or when the nursery calls to say he’s bumped his head. I can’t describe the fear that grips so tightly I cannot breathe, I sob inconsolably and I cannot physically breathe. It’s hard, it’s horrible and it breaks my heart but in the middle of this mess is a beautiful, wonderful little boy. A little boy with a smile (that he uses frequently) that lights up a room, blue eyes that sparkle and a giggle that makes my heart sing. He has drive and passion that is truly inspirational and I am so proud to be his Mummy, I will fight every day to get him the help and support he needs and I will always know nobody could have fought longer or harder for him. A small part of me may never forgive those who caused him suffering through their actions (or lack of) but I can’t let this consume me or I will be blinded to the true joy he brings. It is not shameful to admit it’s hard, say it, shout it if you need to and then get up, brush yourself off and carry on. I am allowed to be sad, I am allowed to be angry but if I don’t talk, if I hold it in it will damage me and I will forget to focus on the little boy in the middle of the hurricane. He is my rainbow and we will weather the storm together.
Be kinder, either to yourself if you’re struggling or to that child or parent you see struggling out and about. Don’t judge, don’t put unrealistic expectations on yourself or others. Accept life is far from perfect and there is beauty in imperfection. Be Kind, always, you never know the battles others are fighting.