Cry me a River

Or rather I have been crying myself a river these past two days. I don't know what is going on, but I really haven't been able to get a grip. As a result, Mike and Annie went to his brothers without me yesterday. I think the quiet time has been good and I am feeling somewhat better today. A big problem for me is that I'm not sure exactly what is making me so sad. Could be the holidays, but T-day was actually fun. There is some other stuff going on with friends that is stressful, so maybe that is contributing, but I am starting to feel bewildered again (Did this really happen? How did this happen? Why did this happen? Have I learned ANYTHING from this experience) I have also been angry the past few days....and damn do I miss our little Sophia Noel. You know, that night, that terrible, awful, haunting night, when we put her to bed for the last time, because that is what the doctor told us to do. She didn't look right, her color wasn't good, she was floppy--why the &(*#$@ didn't I know she was slipping away, why didn't my instinct tell me she needed help right then. I mean for fuck sake, how is your child 15-30 minutes away from their last breath and you have no earthly idea. I would give ANYTHING to have that night back again, to do something different. The docs we talked to after said it would have been too late at that point anyway, but how do we really know, do they just say that to try to allieviate some of our guilt, some of theirs.

I've got to get it together, I know.....Annie and Mike deserve better. I'm in a strange place, a bit of a "poor me" place and I really am feeling like no one can quite understand what I am going through (except, of course, Mike, who is wonderful and amazing, and much better than I at holding everything together). I do know I have so much to be thankful for in this life, it's out there on the periphery....Annie, Mike, Rachel, amazingly loving and supportive family and friends, a nice house, our health, etc.....but all of that doesn't replace the gaping hole where Sophie belongs, does it? I can't dwell in the past, can't stop living just because Sophia died, but how do I stop being so sad..........Mike and Annie come home in about 6 hours, I hope I can figure it out by then!!!!

Snowy days and Turkeys always make me cry?

Wow---I wouldn't have thought that Thanksgiving was going to be hard for me, but I was sad the whole week. The day itself was good, lots of family and friends, a wonderful bird, if I do say so myself (alas the much anticipated Turducken never showed...perhaps a light fingered Fex-Ex employee had a wonderful dinner on us....Regardless it was a lovely day. The only crying I did was on a walk I took earlier in the day before our guests arrived...just general missing Sophie sadness....

So much has been going on, I have been wanting to post but just haven't felt the inspiration. Anne Marie had an echocardiogram and a full spinal X-ray last week, just to make sure that she doesn't have any of the other symptoms of Heterotaxy, which the genetics doc seems to think is what is going on with both girls..a mild expression of those genes. I am thankful we are not planning on having any more children, I can't imagine how stressful that pregnancy would be. The doctor thought a 1 in 4 chance of the same thing or worse happening again...yikes. I am hoping Sophie's case will make it into the big Heterotaxy study at Baylor, but I am not hopeful...both kids have "mild" expressions. So little is known about these conditions. I have read that Heterotaxy may account for up to 1% of all newborn deaths...that could be up to 40,000 babies per year in the US alone. I know there is so much competition for research dollars...but this seems huge. I sure hope Annie can get some answers before she had kids (if she has kids). I must get going on the asplenia screen. I would LOVE to hear from other parents whose kids have asplenia but none of the other common symptons...how many are there?

I guess in the end I am thankful that both girls haven't experienced major illness (OK you don't get much sicker than Sophie did...but I mean prolonged) I am thankful that I had Sophie to hold for almost 16 months (plus the 10 months I carried her)...and I am thankful that I have Annie and Mike to love and to hold and to get me through all of this.....Rachel too, it's just that she is being so "teenager" right now (I hear you snickering Mom!)