Sunday, January 15, 2012

The lies I like to tell myself.

I often have a wrestling match with myself for about a week before I decide to get honest.  It's not like fight club type of stuff where Jason wonders exactly where my black eye came from.  It's just me feeling one way, and then another, and then trying to convince myself which one is actually right based on my feelings.  Don't get me wrong, feelings are a good things, but if I always went with what I felt there would be times when I would likely kick people.
So the last nine weeks of our lives have been chaos.   And while I feel like we are finally settling in to a routine, it isn't necessarily an easy one.  Every time I start to feel overwhelmed by the different things that can be overwhelming I tell myself this can't be hard because we chose it.  We chose Down syndrome.  We said yes to the heart defects, and so I must be okay with it.  (I'm utterly aware of how ridiculous this is, but I'm being honest none the less).
So today at church, another woman had a conversation with me about her daughter having the stomach flu, and how hard it was to watch her child be sick and feeling unable to do anything.  Then she said she thought of us and how hard it must be to have the 'not going away' type of stuff going on.  I had to fight to stay composed for a minute.  For whatever reason, I needed to hear that it was okay for this to be hard.
So here goes.  I am overwhelmed.  I hate that when, and how much, my daughter eats is dictated by a doctor.  I hate that her heart defect makes her so tired that she spends most of her time eating and sleeping.  When she is awake, I feel like I need to work on therapies with her, but also just want to sit and hold her and talk to her so we can get to know each other more.  I hate that her little chest is going to be opened up some day.  I hate that she will have a big scar on it.  I hate that she has to be on oxygen, and have an NG tube.  And all of these things are a lot more compounded by the fact that Jason and I are both tired, and in need of some us time.
Please don't read that as any sort of regret or second thoughts about our choice.  I am thankful beyond words that we get to be Shilo's parents.  She has started to give us small smiles, and they make my heart flip flop ever time I see one.  She is so layed back and easy going, that even when she is hungry, all she does is make clicking noises with her tongue instead of crying.  She also, for whatever reason, believes that being buckled into her carseat means that she should immediately poop and then cry until we can get to a place to change her.  She tolerates her sister's antics of trying to help her clap, dance, or take her paci while she is sleeping.  These are all things that we find fun and amusing about her, and that bring us great joy.

So there you have it.  Would I change our lives?  Absolutely not.  Are they easy?  Nope.  I am reminding myself that a lot of these things will change after she has her open heart surgery.  And some part of me really looks forward to being on the other side of that.  But for now we will continue to do our best to adjust to our lives and remember that peace is not the absence of troubles so much as the living in the presence of The Almighty.


  1. Andrea,
    It IS overwhelming at first! You are completely not alone in that. I don't think I took the time to take a solid breath until Liddy was almost 4 months old! And if I'm honest with myself (and you) there are still times when it all gets a little overwhelming with therapies, doctor appointments, etc. along with all of the normal stuff we have going on (school, house work, other kids). Add into all of that the worry and fears that OHS brings along with it and you've got quite the full plate. But a routine will come. The madness will die down a little. Surgery will be over (eventually). And then, without the huge weight of fear settled in your chest, you will take a deep breath and realize that Everything will be ok. Shilo hit the jackpot when she got you and Jason as her parents. Do you still have my phone number? If you need anything at all, please don't hesitate to call. Anything!

  2. Want to hear something ironic? I hate NOT having when, what, and how much Merryn eats dictated by a doctor. With Josie (our first), everything was medically managed. Without that guidance for our second child, I have no idea what I'm doing! I am so lost! I guess I got used to Josie and that just seems normal to me. It's funny I suppose. Hang in there - it will get easier :-)