Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 , You are surely in the right place to find understanding. I hear your pain and wish I could do something to help. When I first embarked on this 'journey' of caring for a special needs child, I felt very overwhelmed and alone. Even though her father is 100% in the picture, he has left it to me to determine much of her day to day care and to learn about her condition. At 23, I was very, VERY lost and not a clue what I was supposed to do. Fortunatly, I was put in touch with good resources and soon found myself immersed in a completely different world from what I had grown up in. I was surrounded by children who had to struggle just to do things that others can do without thinking. Parents from all walks of life trying to do whats best. And, yes, lots and LOTS of desperation and hopelesness. At first it was very depressing, especially since Chelsea met NO milestones and I was doing therapy with her daily and feeding her as healthy as I could. When mito was brought into the picture, and her condition began to compund, it was like starting all over again (we had previously been told her condition was benign). And we knew absolutly nothing about mito. But I kept perserveing, kept looking. I didn't want to give in to the bleak out look that had been painted by some drs. Fortunatly, a better computer meant better access to info. When I found umdf, and then this group, my perspective began to change. Much of what I have learned and read about others experiences here, has made our life look like a cake walk (including Emma!). Yes, Chelsea has severe symptoms and yes, her condition is life threatening, but I do feel she enjoys more stability then many others here. Also, spending time at school with Chelsea gave me an opportunity to get to know some very special children, and caring adults. I began to see past the struggle and pain and see the beauty of their existence. Their emotions so much more intense over hard won accomplishments. I became very endeared to a little boy who was in chronic pain, but by far had the brightest smile and strongest personality of all the other 2 year olds. When things get overwhelming I think of my rule of opposites: You can't have joy without pain, There is no happiness without sadness, If there is no struggle, how can you triumph? And truly the hardest lesson of all: appreciation for life comes from death, from losing someone special. Emma has a truly extraordianary life, and she is only 2! Yes, you have been thru the worst, but she she made it, and she is with you now. Mito is a truly terrible sentence, but if we give up hope, then it has won. When we refuse to give up hope, that is when our spirit prevails. Wishing you much hope and peace, e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 by all means! Glad to be an inspiration! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 by all means! Glad to be an inspiration! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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