My Thoughts
“Ever has it been that love knows not its own depth until the hour of separation.” Kahlil Gibran
Leave us your thought and experinces.
If you have poured your heart into a poem – share it with us.
Be brave – remember to live in the now.
Happy days Luc
I am taking every moment of Luc’s life, in every detail, and loving it. All I have left is to give him love.
Wayne Skews 2009
One Response to “My Thoughts”
29 aug 2010
Luc is still showing no overt signs of the disease.
He is mostly cheerful and a great to be around.
Lately he has started to to mood swing. From a happy bloke playing soccer to suddenly not being interested in anything. He wants “up”. He refuses to ask verbally or to sign “up”. He will stand and cry – for 40 minutes if you let him, until I pick him up.
This could be normal 2 year old behavior…. who knows. This is what makes it so difficult. Trying to figure out normal behavior and odd behavior. Of course I am constantly checking my own analasys to see if I am reading too much into it.
His development in all areas, axcept speech, is spot on. The cohlea has been a blessing. He hears and responds perfectly (when he feels like it). He does not like to be “offline” and will look for help if the magnet detaches.
His ball skills are great – he is able to kick from his hands and will spend time practising.He started soccer lessons and Sue takes him through every Saturday morning. He loves TV – whether he is online or not, and is very particular about what he watches – we will have to go through several shows before he chooses what is right for him at that moment.
He has lately taken to waking up at 3am and will come padding through to my office for company – we had to nip that in the bud very quickly – with me working in the dark so that he can see no lights.
Sue and I talk often about “then”. With his mood swings it is a taste of how difficult things are going to get. As he loses function his frustration will build. Being a head strong child it is going to be rough going.
We speak of how we will care for him, how it will be when he is unable to walk or talk. Sue is pushing hard with sign lauguage. My greatest concern is how to comfort him in his end days. If he cannot hear how will I soothe him – how will I lie to him to say everything is OK?
We speak of how we will be – how will Sue be when this gem in her life dies bfore our eyes -how will I be, how will I hold my soul together as the child I love dies and the woman I love watches – helplessley.
We speak of the very end – do we keep him at home to die – or in the hospital….. and when he is dead at home – who will bury him – do we phone the State and let tham take his little body away?
Everytime my patience wears thin with 2 year old behavior I think of this – and it dissapates. I take as much joy as I can, in doing so I am giving as much joy as I can. Long evenings on the grass with a soccer ball will be all I have when it is all over.
I think of after – when the huge hole in our lives fills us with agony and pain. Will we survive – will we find each other, or will our pain be such that we lose each other?