Once upon a time, there was a family just like any other. A mum and dad and two children, a boy and a girl. One night, the dad felt his leg bend on its own. Now, three and a half years later, the dad is in a care home. This is the story of a brave family, which kept going.
‘Why can’t we be a normal family? It’s not fair. Our dad can’t take us out’.
‘It all falls to me. Nobody can understand. I see other dads doing things with their children’.
‘Why me? I want to do something for my family. It breaks my heart to know how they miss an active dad’.
Thing is, it doesn’t get easier with time. The loss mounts up, the resentment and anger. The feeling of helplessness. Nobody gets used to it. Single-parenthood wasn’t part of the plan.
Yet, in the face of constant deteriorating health, we carry on. Falls in the house, dad lying on his back on the wooden floor. Sebastian remembers the time the paramedic drove into the Subaru. They’ve seen the loss of legs, feet, arms, hands, voice and eating. So much to process, and they keep going. Smile, laugh, talking well to everyone. I am proud of our family.
Sebastian drove my various wheelchairs, including races up Marwood Close. He becomes the best driver by far. Valentina has been brave to have weekly counselling, and I’m so proud of her. Both of you juggle, and it brings smiles. You know how to make people happy. Valentina, you have persevered with your violin, when others would give up. Your whistling is a joyful sound. The parents of your friends aren’t in a care home, your dad is and I think that you’re brave every visit. You both ask what I need, often knowing in advance, fan? Pointing which way? Food? Get a carer? You might not know it, but you’re very helpful to me, at a time when most kids don’t have these worries.
Mum has been on her own in the house with you, and she, like the you, has seen a person she loves lose his physical strength. You may not know it yet, but many people in mum’s position either give up, or turn to drinking alcohol and smoking alot. I am very proud of your mum, and I am sure you are too.
We’ve somehow carried on. Orchestra trip to Germany, French exchange with Thomas, school every day with very few absences, both of you taking care with your homework. Both of you do great work in maths, English, languages, and the rest.
The loss is always there, I am sure. ‘My dad is taking me here, We are doing this’. You keep going.
Golf was our thing, Sebastian and I. It’s what we did together, walking around the courses, The Nine of Herts, West Herts, chipping and putting. Watching you develop. I bought clubs and had lessons, as I thought of us walking around courses and you laughed at me. You play less now, I understand, I hope you’ll enjoy the feeling and friendship in golf again. I will never, ever forget our times together and watching you. You love your bike, kicky-uppies and Dude Perfect.
I was fortunate enough to be able to enjoy your baking, Valentina, before I lost the ability to eat. Lemon, chocolate, biscuits, cakes, I loved it all. You’ve kept going and everyone enjoys the cakes you make. You are also recognised as someone who produces high quality and beautiful needlework. Just so you know, I would have enjoyed taking you to shows and competitions. I am impressed with the attention to detail. You didn’t give up, when many in your shoes would.
You’ve both overcome any fear of dogs, which is a big deal, and we must be grateful in part to Bengi.
Everything was steady until the start of May. I was telling people I had stabilised. Then I got sick. Being sick when you can’t move and spit is not recommended. You saw me in bed, not looking well. Then you had to process one more thing, dad having a needle in his leg, delivering medication.
I know why you get angry and frustrated. You are incredibly strong young people, and I couldn’t be prouder of you and our family.
There is always one who gets taken for granted. Clean clothes, a good meal, take me here please. Oh, and by the way, be the rock. Of course we have our responsibilities, but imagine undertaking them in the shadow of MND and the scares it brings with it. I really can’t imagine being in Jane’s shoes. I am proud of our small family, and how I miss doing things together.