Showing posts with label Heterotaxy. Show all posts
Showing posts with label Heterotaxy. Show all posts

Saturday, December 15, 2007

Anger Management


If you are someone who really wants me to be o.k. and thinks I should be better by now....I'm great...so read no further and have a Jolly Holiday!


I have been managing to be very angry lately....It is tough, because I am trying hard not to, but I can't seem to contain it. I am snappish at work and at home and easily frustrated, irritated and pissed off. Thankfully my family is very forgiving.....and what is at the root of this anger? I can't say exactly, I know it is related to Sophie's death, but it I can't quite pinpoint the source. Am I mad that she died, hell yes I am...but that doesn't do any good....Maybe I'm mad because the whole world keeps right on moving along and I want it to stop. I want everyone and everything to come to a screeching halt and think about Sophie and what happened to her and how awful it is...of course I know that is unreasonable, life goes on and I must also, but boy how petty and out of proportion so much of life seems.....If only people could know how little I want to care about egotistical tug-o-war pissing matches at work, about who said what to who about whom, about whether we ever get a renter in our condo.....I hate that I have deal with these things. I just want to wrap myself and my family in a giant down comforter and hide away from everything. Especially Christmas.....I'm like the grinch I wan't to stop Christmas from coming...but rather than take every body else's Christmas and dump it, I would just climb to the top of Mt. Crumpet and stay there.....
At the very least it would be so nice not to have any other stress in our lives right now...If the real estate market would turn and we could dump both our rental properties....neither of us has the energy to be landlords right now and we are going to pay the price for that later....if we didn't have worries other than ourselves and the kids, what a relief that would be. Laundry and a teenager who won't do her homework...that I think I could handle--I'd even give up my cleaning lady! A mountain of real estate rapidly losing value, not so much....hard to deal right now.....
OK...time to put on the happy face and make gingerbread people (how PC)....

Friday, November 23, 2007

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!)