I have been meaning to write this for sometime now, and today is as good a day as any as it's my 49th birthday. When we had an idea that something was wrong with Cassie we thought it would be something minor like an inner ear infection. When we got the news it was sca2 even then although I was upset and angry and all the usual stuff I still believed that everything would be fine. The last year has been difficult as all we think about is ataxia, there is simply no escape from it. I have been on here before talking about treatments and cures and I now realize that I think I have been going through my denial faze. Just like my son Gary when he was diagnosed with 3rd stage hodgkins lymphoma all I wanted was some doctor to say everything will be ok, but of course they cant. as it turned out Gary did survive and 9 years on is doing great. Now the same is happening to Cassie all I want is to be told that everything will be ok, but of coarse no one can. There is no treatment for ataxia and now I believe that I always have been in denial and think that how could I possibly lose my daughter, but people do. We are not well off people but every spare bit of money goes to ataxia research in the hope that one day something will come up for Cassie and all of you. Maybe it is denial but at the same time I will never give up hope. Sorry if I got everyone down. It's a lovely day here so I will take our wee dog Buster out for his long walk. Stay strong everyone and you are all in my thoughts x
I think some denial seems to work for me. I mean sure I realize that I have Ataxia and that won't go away. But since this is a new chapter in my life that I'm always learning to do things just in a different way, that I was chosen to have a mission in life. That mission which everyone on here gets to share I think is helping others know what ataxia is about. Even if it's just a small circle of people. For me knowing that other people that don't have to deal with the day to day challenges that we do I can be an inspiration for others that don't have to deal with it. Shoot if I can get myself to do something they sure can.
It may look like our challenges are more negative if we choose to think that way, it's a choice how we look at it.
I think turning 49 you might have wanted your life to go a certain way and it's not what you had in mind, but I believe God has other plans sometimes. It depends on what your Higher Power is. We all have to grieve when we feel some loss, but I think it's how we look at it after we come out of grief. I think thats normal to feel the way you feel, but you can also choose to make it a great birthday! I hope you do have make this a great day! :0) They are lucky to have you as a Dad! :0)
Thank you all again and I have had a great birthday. And to be honest with you sometimes I would have liked things to have been different , but I have a great family and I will never lose hope. I sometimes think why me, but then think why not me. I don't blame anyone or ask anyone for help. but sometimes the kindness in people just gladdens your heart. When you get up in the early hours and you think what a struggle life can be its at that moment you can feel so alone. Coming on here helps so much. I remember my wife said that she could never be happy again but I know that's not true and so does she coz you pick yourself up and keep going for the family as a whole. Life hasn't been great all the time but sometimes it has
We parents, want the best for our children. We want them to be happy and healthy. When they are sick, we would take that on if we could. We worry about them no matter how old they are. Therefore, I think your feelings are quite normal for a loving, caring parent! Don't be so hard on yourself, as you only want the best for them! When my children were 12 and 14 years, their dad died. I am so sad at times for them, as he's not here physically. They are now 31 and 29, one is married with two children (my grandchildren) of his own. Both have successful careers and are doing well. Although there are still times I wish their dad was around (physically, as I know he's around spiritually), life worked out the way God intended. Life works in mysterious ways. The moral of my story is we must be happy, positive and enjoy every moment, as we don't know what the future will bring us. Sorry to rant on and on...ha! Anyway, enjoy your birthday Punk! ;o)
Thanks Rose. Cassie is away on holiday for 2 weeks with her boyfriend who is a lovely guy and takes care of her. Sorry to hear about your loss, it must have been hard on you. I think ranting is what this place is for x
Yes Punk, this site is great for a good rant...,ha! We all understand and can be supportive of each other (so glad your daughter Cassie has such a wonderful guy in her life)! My best to you..., ;o)
