Stand Still

Stand Still

Written Apr 16, 2012 9:20am by Amber Gannon Medina

It has been very quiet at the hospital. We are just. Waiting.

I know I've tried in so many ways to explain how long and exhausting our day at the hospital can be. John said it perfectly last night-emotional exhaustion can kick physical exhaustion's ass. I guess I haven't been able to describe it because I don't even quite understand how spending a day in a hospital strips you of SO much-energy, fresh air, interactions with the "real" world, sunlight....There is an absence of time and before you know it either a minute or many hours have slipped by and you never know which it is until you look at the clock.

In my mind, April 15th was supposed to be just one of the many days that Mira was supposed to be getting better. We imagined that maybe (almost) 3 weeks post-Glenn Mira would be getting back into the swing of things. We imagined her having physical therapy (one of her favorite exercises was when the nurse would sit her up with a pillow for a desk and she would get to put her chunky baby arms up on top of it. She likes to survey the world going by her hospital door in this way). We thought she would be facing eating challenges, but that maybe she would have gotten her G-tube already. We imagined we would be going for walks in this nice weather. Maybe we could have met with the discharge committee to talk about home health info and clinic visits? 

Three weeks ago-can it be possible? This was the optimistic outline I had before Mira's surgery. Once it was clear Mira was taking the longer road again, I revised my expectations. OK, I thought, maybe in two or three weeks we will just be taking her pleural chest tubes out and will be able to hold her again? Maybe she will just be eating very little amounts, and of course she won't have her G-tube yet? And maybe she won't be back to her old slightly smiley but very intense self again, but she will be able to watch her shows or bird mobile and maybe hold some of her toys?

All of this thinking is part of what is behind our emotionally exhausting days...None of this is happening. None of this even seems close to happening. I had mentally prepared for Mira to want to take another route than any we had envisioned for her, just like she always does. I just didn't think it would be so unknown.

Nothing has prepared me for how difficult it is to see my daughter in pain. Not just for a minute or two when she gets her twice daily shots and not just fussy periods throughout the day. She has been in pain for much of her waking moments.

Mira also seems sad. She seems like she hurts. Like being awake is painful. It hurts me so much to know that in these past few weeks, Mira has not been able to enjoy much of anything. She is either sleeping (in a very doped up stupor) or awake and crying. Once again, she is either angry or in pain enough to scratch her face up pretty badly and so she wears the mittens of shame.

What really sticks with John and I right now is how little of a life Mira has had so far. It may be our warped memories, but we can only really recall a few weeks (in total) where Mira was (mostly) left alone and felt well enough to play and smile. It breaks my heart to know that she turns 6 months tomorrow and she hasn't been able to enjoy much of anything. In fact, when I feel like making myself really sad, I list them:

Hasn't been able to go to brunch, doesn't have the strength to sit up, hold her head up on her own, roll over, never taken a ride in a car, never taken a nap with mom or dad, no baby wearing, never eaten by mouth, no walk outside in the stroller, hasn't seen flowers or sat in grass, hasn't been to church or participated in a family holiday, never passed around from one loved one's arms to another, never been to a park or seen a dog, hasn't been home or seen her nursery, can't start eating solids, never met another baby, never traveled in an airplane to a new place, never played in a sandbox or dirt, never smelled the air after a storm, never had a bath, has never been carried around the house.....

What are we doing? What are we up against?

We are back to basics here. What is more basic than simply trying to survive? That is what Mira is up against right now, and that is all she seems capable of doing.

This is all compounded by the fact that the doctors don't know why Mira is not getting better and in order to figure that out, we are facing yet more invasive and dangerous procedures. 

When I take away all the fear and anger, it all boils down to simply wanting Mira to be happy and wanting her to experience some comfort and joy. Wanting more for her than mere survival and pain.

I don't want to be a "complainer". I've always hated when people continually see the glass half full. However, I don't know if I would call where I am at or what I am doing as complaining. It seems much deeper than that. It is more of a plea for my dearest Mira. A plea that she is able to see why life is good and worth living. A call out to GOD for her to stop suffering quite so much physical pain and discouragement. A prayer for her to be able to LIVE life! This pain and suffering, this hospital stay. It has seemed endless......

The one thing-and probably the most important-that Mira has known in this limited life of hers is true and great love. You have all either flown your love in to her, brought it with when you visited, sent it to her in packages, left it in messages and prayed it for her or buoyed us up so we could bring it with us on our visits. I am truly grateful for you all and for your mind numbingly endless support. Seriously, every time I am sick of the sad updates I post, you all take time to write something that keeps us going another day. 

If I had to guess, I would say Mira knows life is worth living because you and your love are all a part of it.