I don't believe this feeling of waiting, watching, and worrying about what dreaded thing will happen next is exclusive to parents of children who have received a diagnosis such as Lu's. I imagine people can wind up feeling this way for jillions of reasons: a terrifying car accident, the sudden death of a loved one, being in remission from cancer, a home invasion...the list could go on and on. And maybe there are only certain personality types that would react to traumas in their life this way, I don't know. But, as is the nature of Rett Syndrome,it never stays the same; Dr. Sasha calls it "a moving target". It is always changing and so how can I not constantly be on my guard for what it is going to throw at Lu next? How?!
Since the time of her diagnosis, she has lost the rest of her functional hand use. One day I had to admit that she couldn't turn the pages of her board books anymore, which was something she used to love to do. She had little bins of them and she would pull them out and flip through them and look at them so intently:
Back when these pictures were taken we had no idea that within two years this simple act would be an impossibility for her.
Here is a picture from the summer where she began losing her ability to sit up on her own:
And before she lost the ability to scoot all over the floor, which she could do for a very brief time:
Of course there was her mouth losing the ability to eat enough to maintain a healthy weight and the placement of her feeding tube:
And now seizures that leave her exhausted afterward, and even recently made her lose consciousness before the seizure had ended because she was not breathing:
Tooth grinding, hyperventilation, breath holding, constipation, changes in muscle tone...it just never ends, and never stays the same, and never stops terrifying me. I guess the old cliche "waiting for the other shoe to drop" is fitting, but in this case I am waiting for her spine to start curving, or waiting for her first case of pneumonia, or for her heart beat to become irregular, or any other number of things that can go wrong, and may or may not.
So, while it would be beneficial for my body and mind to be able to relax a little bit and "un-hunch", I just can't. Lucy's life and health, and well-being are in Chad and I's hands, all day, everyday. It is every parents' job to keep their child alive and safe, but when extra health concerns are thrown in, I am literally, day in and day out working to keep her healthy enough to live. Not only JUST healthy enough to live, but to live AND have a quality of life that helps her to make friends, have new experiences, become educated, and happy. Not worrying about these things is not an option, we must be ever-vigilant, always standing guard and trying to keep Rett Syndrome at bay the best we can.