It has just been one of those weeks.  There isn’t really a discernible reason for it.  I have just been emotional.  It’s been busy lately – it has really been a pretty difficult month overall – complete with big decisions and big appointments mixed in with all the daily stuff.  Life has been busy, and I haven’t had many breaks.  I was explaining this to someone recently (maybe I even wrote it already on here?): It’s not really that I need a break from Kiran.  He’s pretty great, and he helps remind me the reason for all of it.  But I need a break from my brain while caring for him.  When I am with him, it’s like every ounce of brain power and heart goes into him.  His appointments, his feeding, am I doing this right, I need to research this more, we better work on physical therapy exercises….

It is too bad you can’t actually take a break from your own brain, but at least when I have those breaks to get out on my own, with my husband, or with friends, I can distance myself a little bit from the constant whirling and worrying.

For some reason, even though Kiran is stable heart-wise, I have been very emotional around the year we have had.  Others in the heart community have gotten tough news recently with their older kids – time or almost time for another intervention – and it has reminded me that this is never done.  That being said, I have to find a balance and get past this “waiting for the other shoe to drop” mentality I currently seem to be stuck in.  Sometimes, despite all we have been through, I just feel like it’s too good to be true…that surely something is going to go wrong with this poor little turkey’s heart.  That it can’t be that easy.  I know – sounds weird – the kid has been through open heart surgery.  He’s just done SO WELL, and it seems like it can’t be real.  This is making waiting for his lung perfusion scan results – which we still haven’t gotten – very difficult.  It is amazing, really, the nightmares my mind can concoct.

I am hopeful this weekend will help.  In true whirlwind fashion, we are leaving for Kansas City tomorrow after our feeding clinic evaluation in the morning.  This will be our first overnight trip with Kiran that has nothing to do with medical appointments.  It just occurred to me this morning why Kansas City at Christmas time felt right to me.  My parents and I went to Kansas City at Christmas time in 2001, just a month and a half after losing my brother.  It was something different.  We needed things to be different – to feel different – because we were so different.  Everything was different.  I feel that way this year.  We came into the year having no idea how it would go.  We didn’t know if our son would be here to celebrate Christmas with us or not.  And even though he is, our family needs healing.  This year has changed us significantly, and we need a space to be different in, together.


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