Approaching the 1-Year Mark

I can hardly believe that in just over a week we will be facing the one year mark of Kaidance's birth and death. I didn't expect to be "sadness free" by now or anything like that, but I did expect the pain to be at least a little less. Boy was I ever wrong...
I've all but stopped sleeping without the help of tranquilizers and even then, I wake up thinking I hear her cry and trying to get to her.  It's only after the fog of sleep lifts that I realize, with brutal force, that there's no cry to go and soothe.  Worse than that, there's no way to make the crying go away.  I can't control that I hear it.  It's part of that day that's stuck in my mind that I can't make leave.  I thought that I'd start moving forward, and some days I do, but most days I feel stuck on May 29, 2011...
I function just enough to say I do stuff.  Since moving to my parents', I sleep all the time or don't sleep at all.  I spend much of my time not talking and not even really thinking about anything.  My mind is either blank or racing.  It's the weirdest feeling.
I spend a lot of time talking to my therapist about guilt.  Not only am I still feeling guilty over Kaidi's death, but guilt over Kamden's pregnancy and the issues he has brain wise.  She put it in perspective in a way I'd never thought of before.  Never in my time during either pregnancy did I have the thought of, "I'm going to take this medicine/eat this food/not take this medicine so that it hurts my baby" and that would be the only time I could justify guilt over it.  No one ever put it that way when I talked to them before and it actually makes sense.
Kamden has started openly talking to anyone who he meets about his baby sister which is bittersweet.  I definitely want him to acknowledge and remember her, but I then wind up having to explain why she isn't with us (this usually happens with wait staff at restaurants) and then there are the questions...oy, the questions.
I don't expect people to not be curious but usually it starts with them looking around and saying, "Oh how sweet!  You have a baby girl too?"  I smile and reply, "Well, we had a baby in May of last year, but she died not long after being born."  If I'm lucky, I just get a surprised look.  Most times, I instead see a mix of horror, embarrassment and curiosity.  I take a deep breath because I know that next is coming, "Oh...  I'm so sorry.  What happened?"  I know that it's purely up to me to decide if I'm okay enough that day to talk about what happened with Kaidi, but if people ask, I expect they really want to know, so I'll tell them.  Most times I'm glad that I shared her story, because the general consensus is that no one has really ever heard of Potters Syndrome.  I know that there's no cure, no prevention, and no stopping it once it's started, but if I can get AWARENESS out there...if her life, however short it was, can bring knowledge to someone who never had a clue before, then it wasn't for nothing...  At least that's what I tell myself to get through.
I hope that some day...maybe sooner than later...I'll be able to start a program to raise money and awareness with regard to Potters Syndrome.  Years ago we thought a cure for cancer or AIDS was impossible...and look how far we've come!  Maybe, just maybe there's hope that another mom in a few years won't have to receive such a diagnosis and immediately know they will never see their child grow up.  Maybe...maybe there's hope out there after all.