Lucy has been throwing up since last night at 12:30. Lasagna all through her hair. She couldn't keep anything down and Chad and I were terrified that she would throw up more and aspirate, or that she already had when she threw up the first time. Aspiration is very common in girls with Rett and can easily lead to pneumonia. We thought she was getting better throughout the day, and then she started throwing up again. We will go to the doctor's tomorrow.
A woman just posted in the PA International Rett Syndrome group on Facebook that her 31 year old daughter with Rett Syndrome died on April 8th. She died in her mother's arms with family all around her.
Then I switched over to the Newsfeed on FB and the first thing I read is that a little girl who is almost five (and has Rett) was admitted to the hospital for being in respiratory distress after coming out of a seizure. She was admitted to a hospital in Orlando Florida...because they were just finishing up their Make-A-Wish trip to Disney.
Last month, four girls between the ages of 3 and 21 with Rett Syndrome died of complications from the condition. I'm sure more girls than that passed away in the world last month, those are just the ones in the Rett Community that I am familiar with.
I certainly acknowledge that there are a zillion bad things happening in the world every day. I often say, "Bad things happen everywhere." No one is safe. I care a lot about all of the bad in the world, and I wish I could fix it all. But the thing is, nothing is as important to me as the beautiful child that laid in my lap all day just wanting to be held. And I can't "fix" her. I cant make Rett Syndrome go away. With Rett, little things such as a cold can become extremely serious in the blink of an eye, so Chad and I worry about EVERYTHING. But, unfortunately, even if you worry about everything and do all of the right things, Rett can still win. Just ask all of the families I mentioned above.
Chad and I are exhausted from worrying that Lucy is going to become dehydrated or that maybe she has a glob of lasagna stuck in her lungs that and it is going to become infected. And then I have to read these sad stories of other families suffering from this wretched monster and who have lost the war. They weren't stories that I wanted to hear at the end of this long day, but they are stories that I insist on hearing. We have to know what we are up against.