Despite all the calls and appointments there is still so much in the air for Liberty. Her transportation, her attendant care agencies, and her newest doctor. I wanted everything ready before her college years begin. No such luck. Letting other people take her, even though they are amazing and loved? Ughhhh. Isn't this the same issue that all parents face when it comes to sending an adult child into the world?
Deep breath.
This morning we met with a Urologist. There are a few things that we keep very close when it comes to Liberty's struggle. We have tried to keep her dignity and "princessness". The inability to potty as needed and predictably, one and two, has been an issue for a long while. We have a potty schedule and try to get as much fluid down as possible, but remember that she doesn't swallow well so drinking is difficult. That means that her fluids are thickened by additives which cause other issues. Frequency and unpredictability added to her constant fear of falling, especially in new bathrooms makes for greater challenges. So, we have been waiting to see this new doctor since June.
<http://www.pdf.org/en/spring07_gastrointestinal_and_urinary_dysfunction_in_pd>
Libby will be going through several tests in September and we will go from there. Our goal is to keep her basic body functions working so that she has as much of a normal experience as is possible.
Jennifer, Mariah and Grandma Linda have done an amazing job practicing to take full care of the Princess of Enigma. I am grateful and I wish I had more money to pay you what it is worth. And Mariah, I have tried very hard to keep you active in Liberty's life while not having you be your "sisters' keeper". Yet, I am grateful that the schedule between your classes and Libby's will work out. Jennifer and Linda, it amazes me how your schedules and willingness coincide with times when Liberty needs help.
I am allowing myself a little more time to be on edge and worry. My kid wanted to be in a dorm, she wanted to "go off to college" with her friends, and be independent. That is not our reality.
I have to keep in mind the blessing that Libby is here and has a chance to go to college. She has a chance and I will make sure that she gets where she needs to be.
I know that as long as we are doing what we should everything will work out; I'd just like a few more ducks in a row and more of a coherent plan in place. We are trying. We are damn sure trying. 
Meanwhile, I'm just a mom of an incoming freshman who is starting college and I'm supposed to let go. (For this picture I endured a lot of whining and had to implement some bribery.)
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