The following was written at the request of a national red top about a month ago. It was requested, then rejected as not the correct way in to our story. They wanted a ‘Save our Son’. The physical horror of MND combined with the lack of research funding was not deemed sensational enough.
I wanted to share this with the people who understand.
The day is coming nearer and nearer that will mark a year since you were forced to leave us. But you have not left us, and never will. Your bravery and humour during the worst imaginable months has brought us all a bond that is impossible to break. Oscar and I are supported so well by so many, I know that looking after us was your most hated part of having to let go. I hope you can see that we’re doing ok, and not to worry if you see me crying still, it’s only because I am remembering you.
You are still in our thoughts for so much of the day, some thoughts are welcome and some I wish I had no memory of. Most days I miss you because there is no coming home time, no chance for me to tell you about our day, what’s made Oscar laugh, what’s made him cry, new words or a lost toy found. There’s no hug for me at the end of a day of tantrums, no fresh face through the door to light him up like you used to for those four beautiful months before the first signs of any illness. He wakes me in the morning so full of energy, running toward whatever life has in store for him, and it fills me with memories of how you were before the wheelchair.
His favourite shout of the moment is ‘I did it!’ I wish you could see, the look in his eyes as he grabs my hand and pulls me with all his strength toward a scribble on a page or all his favourite cars lined up in a perfect row. I can still see you telling me ‘I can’t do it’. It’s there when I see him pick up a pencil or put a spoon to his mouth. I’m sorry, I know it’s not how you want me to remember you and it’s the last thing you would ever have said when choice was a part of your life, but I find myself holding on to any memory that lets me see your face. He insists on doing everything for himself now, it is both amazing and frustrating to watch him try. I now have to step back to give him encouragement, where I had to step forward to give you help. These parallels have not stopped. I am still lifting, bathing, dressing, feeding and wiping away tears, but these chores are now only part of motherly love and I no longer perform them with sadness and loss.
His time is filled with creating such mischief, and so cleverly worked out that it makes me wonder if you are whispering in his ear. I’m still truly sad we couldn’t give him a sibling to annoy with such a mischievous mind. You and he share almost identical choices with strategically placed cuddles for both devilment and gain. I’ve lost count of how many cuddles have left some of the lunch from his sticky little fingers on my clothes before I can wipe them, or are used as a vehicle to get nearer the biscuit tin, but he gives just as many real ones too. I remember when you could no longer give a hug and had to ask for one instead. I would lift your arm and wrap it around me for you, the saddest indignity of it all.
His hair is so beautiful. I remember sitting him on your knee, lifting your hand up to touch his hair, and how sad you were that it felt so rough to the touch of your hands with skin that had become as soft as a baby’s. I took some scissors to his fringe the other day, and there were your eyes. They usually look like mine until the thick brow is exposed, then for a few weeks it’s all you. They’re beautiful and they’re both his friend and enemy, getting him as many times on the naughty step as they get him off, and they are always betrayed by the curl at the edge of his mouth that gives away his true intentions, just like you. You would be very proud, and I have no doubt that his eyes would get the better of you though, and I would still be the one having to dish out the discipline all by myself if you were with us today. It’s difficult when they’re looking at me with fearful tears as I leave his bedroom, they are the same fearful tears I had to wipe from your face as you told us it was time for you to leave. I’ll never forget them.
I want you to know that parts our day have not changed, and I love that it makes me feel like you’re still sharing them with us. He still throws some of his breakfast on the floor, still spends a lot of time playing with toy cars, is still fighting with me about getting in the car seat, ‘No!’ is still one of his favourite words, and Iggle Piggle is still dancing around as we eat dinner. Best of all, he still gets the book you used to read to him every night till you ran out of breath. It’s one of his favourites. Strangely, he still kisses everyone on the forehead as he did to you, when the ventilator mask came between you. I’m sure he’ll sort it out before he starts kissing the girls.
Many have asked me how I cope, and the answer is very simple to me. I still feel loved. It is not choice behind the reason that you are not with us any longer. I just wish that you had not had to suffer the most torturous and undignified death. I’m carrying on your fight for better awareness of Motor Neurone Disease, and I hate that, because I too would rather not know that something so terrifying and cruel exists. I too would like to bury my head in the sand and take back the knowledge that there is such little research funding for something that can so quickly take a fit, healthy person and reduce them to nothing more than a body kept alive with no movement other than their eyes, frozen alive but with feeling in every nerve ending so that you can’t even escape an itch, feeling the weight of your body bearing down on limbs that can not move, aching with pain, and a mind untouched, left to work overtime. How am I to forget this?
I’m not sure how much longer I can carry on the fight. Knowing that you had a rare familial strain is what keeps me fighting now, but how much longer before he starts to ask questions and my time is up? I refuse to bring him up with fear. I don’t want Motor Neurone Disease bearing down on his shoulders. You didn’t live your life that way and you only have to watch him for five minutes to know that he has your lust for life and cheeky little spirit. He kisses your picture every night before bed and quite often tells me that you are ‘so happy’. Occasionally he tells me you’re ‘cute’. Stay in him.
I will love you and think of you always.