I am having a hard time today.. of course the pain is always haunting, so far my attempt to assimilate it is moderately successful, but still having issues.
My inabilities and pain affect other areas aside from just mobility,sanity, sleep, it affects how I want to be with my wife and kids. Today half my kids went to friends house, they other half to the beach with, mom. Im home with my thoughts alone, and I find myself unable to reconcile with myself. I used to go to the beach with them after a long day at work, I would load up a couple of my landscaping shovels, buckets. I would then sit in the rocks and sand just at the boarder of the water and beach.I would watch them swim as I dug trenches and made huge mounds of sand and rock, and when they tired of the water they would join me with their tools, these trenches would go for hundreds of feet, sometimes it would attract the attention of other children and then my children and these other beach going children would continue while I sat by the blanket collecting nice rocks and shells.
today is a reminder I can no longer do this. it is a part of my life which has "NO" substitute. and the time lost I can never get back for myself or my children, especially my youngest, he only knows me like this, never a day on my shoulders, in the sand at the beach , helecoptered around, tossed into the air, chases, or adventures in the wild. Ihave nothing to replace these with them. I used to play music with my kids alll the time, but i am having issues finding the song in me to share lately.
I see on this site we usully discuss the disease as it is and the obiviouse difficulties, I find these to be the hardest to live with though, the pain is like the ocean..always active and moving, some days more so than others, and we learn to adapt to the ocean ad fight the storms and as long as you come out the other end we are blessed, but you suffer losses that scar you when you weather the storms, its a deeper pain that you never expect. I wanted to post this here because I know you all understand. I know here I dont need to feel ashamed and will not be judged, Than kyou all for reading this.. and I hope somehow this helps others feel less alone, im not sure how or why, but it hurt to admitt this but felt blether once i shared with all of you. Thank you all