Care for the Caregiver
As parents of children with Rett syndrome, we face challenges - mentally, spiritually, emotionally and physically. We know that out of sight is never out of mind.
It takes strength and energy to pursue the diagnosis, make an appropriate treatment plan and find others who will support it, in addition to all of the many physical aspects of direct care giving.
Emotionally, we must cope with lost dreams for our beloved child, silent stares from an insensitive public and screaming spells that might last for hours, lost sleep we can’t recover and relatives and friends who do not always support us.
We get them in greater share than most. If we keep telling ourselves how unfair it is, we will only become bitter. Of course, it is unfair, very unfair, but what in life is fair? Life gives us a full deck of cards; we get some good hands and some bad ones. Some are easier than others, but we have no choice but to play them all. Play as best you can with the hand you have. It is not the load that breaks us down, but the way we carry it. Remember that no matter how hard you may try, there may be some days that just get you down. It’s part of the territory.
The advice I received from many people when Edie was diagnosed a little over two years ago was to hang in there, that things would get easier as she gets older, and the hurt never goes away but it gets easier. I didn't believe any of that at the time, but now that some time has passed, I know that this is right.