For as long as I have been having dreams, I have occasionally had these two different kinds: one where I can only open my eyes for a few seconds at a time and then I have to close them and another where I am trying and trying to get some where, but my feet feel like they are slogging through cement or quicksand or something. I would have to say that the feelings I have often experienced during those dreams pretty accurately describe how I have felt since we received Lucy's diagnosis. Those feelings include: frustration (obviously), anger, confusion, hope (like when I would get a few peaks from my opened eyes), feeling lost, terror, more anger, sadness that I will not even try to explain, determination, anxiety...and yet more anger.
After joining the International Rett Syndrome Foundation, they sent us (free of charge!) the Rett Syndrome Handbook which literally is about two inches thick. There is just so much information that I don't even know where to begin and so I just choose a section at a time and read it and learn about yet another aspect of this stupid freaking thing that is taking over my sweet Lu. And this disorder effects her entire body, every aspect of her life, so I am still frantic all of the time trying to figure out what we need to do and where we need to go from here. She needs to start experiencing and experimenting with communication devices, but I feel like we also need to focus on getting her walking as soon as possible to increase her chances of staying upright and mobile. But there is so much to know and unfortunately our wonderful therapists and pediatrician do not know much and so I am left to search through this book and talk to others that do know more and then share it with everyone else. And all the while I feel like I'm partially blind and I can't get my feet to move!
Another, slightly more drastic feeling that I experience (a little more often than I would prefer) is that I am totally and completely going to just lose my mind. Like I could tear a room apart while screaming and snarling like a leopard. Thrashing about, breaking windows, smashing furniture...the whole 9 yards. I guess though luckily I think about it and maybe just wish that I could, a fantasy perhaps, but I'm not a destructive kind of gal, so I would feel so bad afterward, but geez I just want to annihilate something sometimes. As Lucy's cells were multiplying, shortly after conception,this mutation took place; that is how I understand it anyway. Man that pisses me off! It makes me so angry that it has been lurking in there all of this time and nobody knew! But it's certainly not done lurking! That's one of the hardest things about this is that she will just keep changing and losing her hand functioning. But when it will happen is uncertain. We are going to see a specialist on March 30th in New York City who will hopefully be able to give us a better idea of what stage she is in and what we can expect based on where the mutation is on her chromosome.
But what I do is just keep on keepin' on. Then I have a break down, rebuild, and trek on. What else can I do. Lu needs me to act as "normal" as I can. She needs me to feed her, love her, cuddle her, change her pants, sing to her in the tub, read her books...and make the best of Rett Syndrome. Chad and I are her big bats. Her super heroes (I'm probably Batman and he's probably Robin...although he does fund this operation...) Since I have made it back to Jazzercise, the whole time I think about how I need to be strong and healthy to take care of Lucy. We are her everything, but she is our everything too.
PS. I did not proofread this so I apologize for errors!