My preoccupations include doing the basics of life in a house now quite unsuitable, while staying on two feet. With OTs and the town council I am looking for a way. My kids are not bothered about this of course.
I do what I can, but so much is missing. I watch Valentina bake and cook (very tasty pan-fried salmon this evening), I love the sound of her violin playing and appreciate the effort she puts into her main lesson work. I watch Sebastian play endless ping-pong golf in the lounge, I watch him at the real course, and I read to him. I miss the feeling of doing physical activity together; I miss it so much.
I am too slow, I can’t roll on the ground and wrestle, hugs are harder, I get ratty and lose patience. I understand why they yell at me. I know they want a normal dad. It’s the most reasonable expectation a child can have.
I laugh, but sometimes it’s out of control. Emotional lability (extreme laughing and crying, often inappropriately) is part of ALS for some. Maybe it’s just that the David Walliams book is too funny. Maybe it is that laughing is needed to deal with the emptiness and devastation I sometimes feel. Sometimes it gets in the way of discipline, and I can’t easily stop myself.
I just want to be here for our children, to help them with life’s bumps and joys, to laugh and cry with them. I still believe a miracle can happen so we can go hiking again together in the Vanoise, so we can walk around a golf course together and so we can walk to school.
Overall, I feel I am totally letting down the entire family. I struggle with not being the man I was. I know there is a bigger purpose, but the frustration of this situation is there.
I am very grateful to the people we know who take our kids on day trips/weekends, who listen to them, who hit balls and who bring some lightness into our family. Thank you for the past and for what is to come.
Kein Wunder, daß unsere Familie so durcheinander ist. ALS ist der uneingeladener Gast, der viel schnell zerstört hat. Die Krankheit ist ganz einfach die größte Herausforderung meines Lebens. Drinnen muß ich die Kraft finden, Liebe und Geduld für Jane, Valentina und Sebastian zu haben. Ich schaffe das nie allein.