I'm feeling better today and not so BLAH, PMS is playing a big roll in my swinging emotions, I'm sure. I'm just glad to be having a better day. I posted the most recent pics of my lovelies. I can't help but be proud. Yesterday we had "forever" day at our Children's hospital. I think to myself...'self, why do we go to this particular crazy clinic, we are always up there FOREVER and there is generally nothing accomplished...except throwing us a new feeding loop to jump around.' But, still I go....I like the doctor ok, it's just always crazy and then I come away feeling like....why did we do that?? I guess I'm feeling less stressed knowing payday is this week. I hate living week to week....but I don't really NEED anything, I just want to be in a better place. Todayis a school half day and all the kids are home and it's cold outside here. In other good news, gas prices are way down. I can't remember the last time it was under two dollars a gallon. Funny, I remember as a teenager getting gas for .89/gallon. Hard to believe sometimes.
We are coming up on Lillian's second birthday. I'm trying to figure out the theme and what we will do. Kind of a bummer that she doesn't even get to have cake...but we MUST celebrate. Birthdays are very important, I believe. I always make sure the kids have cake on their birthdays even if it's just us. The big 2 is also important as we were told that 70% of children with Lillian's "defect" do not live beyond age one or two. This is something I used to really be wary of. Every time she got sick I would wonder if this was "it". Maybe I've just closed my mind and decided I can't live on that, maybe I am living in today and not worrying about tomorrow. What good would it do me anyway? I can't change tomorrow and I know who holds tomorrow and if it was the last day for any of my family or my precious angel, I know where they would be waiting for me. Have to find a way to cope with it. Is it morbid to think on such things? Maybe. But until you've stood at the bedside of your child trying to cling to life, I don't think you could criticize. Her birthday coming up throws me into reliving the passed days. Her birth, the struggles, the victories, the life that is being lived in her capacity. Someday, when I don't have probing eyes, I'm going to relive in writing things I've never talked about, but another time. I need to express it. I guess there are many things I need to be doing, but will likely lay down on the couch, as Lillian had a long restless night. Wrapped up in a quilt vegging. A good way to spend a new day after a LONG day yesterday...
1 comment:
I'm so glad to read this because I "heard" that y'all were at Children's. Maybe one of the girls just meant you had clinic yesterday, and someone else took it to mean you went inpatient. I was really worrying, what with the red drainage and all.
Anyway, you have to have a party! Even if you just make a cake from a box and slop on some pink icing!
And I'm so with you on the borrowed time thing. They never gave us a magical number or any sense of a life expectancy, just said they didn't know and looked at us like we were crazy for asking.
I have tons yet to write about, the topic list seems to be endless. It is cathartic to write it all out and get it down, but I also think some of it I should just keep to myself because who really wants to read about the scary days?
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