Sunday, August 26, 2012

the ugly guilt.

i had just spent 96 days living in the hospital with my infant.  my emotions were still pretty raw.  my heart and mind were still working on wrapping themselves around the last few months of life.  i had been through highs and lows i didn't know existed.  the first few weeks were me trying to figure out how to explain to a three year old death, and praying i didn't have to explain it.  once that large sweep of emotions passed, i settled into my position as warrior, fighting for my daughter.
that description might sound odd to some.  sure, we were at this amazing children's hospital, and yes, they had kept my daughter alive.  but once the super scary part was over, there were doctors with different opinions, wanting to do different test, try different routes, and i was the only consistent in her life.  a new week meant a new doctor on service.  we had four different residents in our stay in the picu.  i was the one who knew everything, her meds, her allergies, her history, and where we were to be going.
but all this was done.  i was now standing in a grocery store for the first time in three months.  it was overwhelming for lots of reasons.  i couldn't remember where things were, and there were so many other people there.  i looked up to see someone familiar.  we aren't best friends-more acquaintances.  we've had quite a few conversations.  we added one more.
i don't remember what all was said in the conversation.  at that point all i kept hearing, from everyone, was 'i couldn't have done it.'  'i don't know how you did it.'  'you are amazing.'  but that's now what she said.  she spoke to my heart in a way i didn't know i needed.  she said she had been following the story, watching it unfold on facebook, reading post, and praying.  and a few small tears fell down her face as she talked about how amazing it was to watch us step up to the plate and fight for one of the least of these.
i still cry when i write about it now.  while we still aren't interested in the praise and glory people like to give us, she spoke what our hearts were about when we signed up to adopt a child with Down syndrome.
for whatever reason, the last few weeks have been the first time since our stay i have really felt the weight of all that happened there.  while we were inpatient i didn't have time to focus on the craziness of it all.  i was trying to focus on shilo, and abigail, and jason.  i took care of myself just fine.  but i didn't have time for deep reflection.  i didn't have the emotional energy.  but now, i have time.  and whether i want to or not it all seems to be pouring over me.
the honest truth, that i have admitted to only jason thus far, is i needed to be reminded that day in the grocery store, that i did a great job of being shilo's voice.  the large amount of guilt that i still feel over shilo getting sick overshadows any patting myself on the back i might want to do.  i know exactly how it happened.  and despite being intelligent enough to know better, i go over it in my head, and know exactly what to do differently to prevent the whole hospital stay.
but no matter how much i go over it, i can't prevent it.  i can't undo it, and i can't get back those three months of life.  so i, instead, cry, when i see pictures of shilo taking a bottle. she should still be able to take a bottle.  i can barely click through the pictures from the hospital, with tubes, a swollen little, and the almost visible lie, lingering in the room, telling me that if i had just.....then she wouldn't have ended up there in the first place.
we are working on learning as much american sign language, as we can, as quickly as possible, to communicate with shilo more.  so i often youtube songs from church to try to be able to sign to her there.  i sit in the back row so we don't draw attention, and shilo watches, mesmerized as i make a clumsy attempt at signing to her.  anytime we sign, it almost always brings a smile to her face.
so today, even though i sat in the back, more people came in after me, and rows of chair were added behind me.  i very self-consciously signed to her anyway.  and i received an e-mail later that contained this, '  I was really touched this morning watching you signing and loving on Shilo. '
the honest truth is i feel like i have failed shilo.  i feel like she would be much further along, she would be g-tube free (and eating baby foods well), and that she would have already had hearing aids, if i had just done a better job protecting her from getting sick.  but every time i begin to live in the guilt, someone comes along and says something simple, plain, and beautiful.  and with it, i know, that God chose me to be shilo's mama.  it doesn't take away all the guilt, but it does remind me that i am doing some things well.  and that is a much easier place to rest.  and i pray, with time, i will wade through all of the pain, and guilt, and come out on the other side with some new amazing perspective.

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