New Game

Written Mar 15, 2012 9:47am by Amber Gannon Medina

I keep waiting for the morning my head doesn't feel all fluffy and cottony. Or the evening I don't feel like going to bed at 8pm. Or the afternoon I am not running around trying to fit errands in when Mira is sleeping. I keep waiting for my brain to work right and my list of to-do's to twindle down before I update our caring bridge, and I don't think its going to happen. So I am hoping this coffee kicks in before I write something that makes absolutely no sense! 

I am starting to get the hint that life with a baby is pretty tiring (Duh!) and I am starting to think mommy brain is not a wives tale. And when I think about how exhausting the hospital is (that place sucks the life out of you, I swear!) and how tough having a baby in the hospital feels, I like to play a new game. I call this game-"Wait until she gets home!" OK, maybe I just made that name up now and upon second glance I am not sure how I feel about it. I may change it. I may just stop playing it.

Anyway, I am really curious about how life with a baby in the hospital compares to life with Mira at home. Sometimes when I express how tired I am or how overwhelmed, I wonder if I have it EASY....That sounds crazy......Maybe it is crazy. I don't know, I have nothing to compare my experience to! Mira is our first child, and all we know is how to be parents in a hospital.

Scenario 1: When your baby has been crying for two hours and nothing you have done has calmed her down, you are able to give her medicine that immediately knocks her out and makes her happy....OK, so in our reality its not so perfect. We HAVE to give it to her because her body can't handle crying for that long, and that medicine that makes her happy is an opiate that creates horrible withdrawal symptoms. I think that scenario goes to the "easier at home" category! 

Or think about all those restless nights where your baby won't sleep more than an hour at a time, and you are waking up with her each time and by the next morning when she is sleeping and you have to get up, you are absolutely exhausted....I don't have those nights. I leave Mira with her nurse, and I go home and I get a full nights sleep. OK, in reality I get a few hours of sleep, interspersed with a few hours of waking up with my heart racing and worries about Mira's next surgery flooding my head. That might be a tie between at home and hospital. This game sucks!

Surgery. It is what is pervading every aspect of my every day. It is there when I hold her, or when I see babies out and about, or when I see old pictures of how Mira used to look.This surgery means so very many things to me. It means Mira's life is being put in danger again with a very serious open heart surgery (although really her life is also in danger every day she doesn't have her surgery-what a catch 22). It means she is going to go through a lot of pain. It means we have to see her go through more pain. It means she has to have tubes inserted into her, copious amounts of drugs administered and then a struggle with the withdrawal from said copious amounts of drugs. 

Really, the real worry, the purest part of my worries, one that follows me like a knife in my gut is-there is always a chance Mira won't make it through this surgery. There is a chance that this surgery might not work for her. 

I know I am not supposed to let negative thoughts pervade, and I need to keep a positive attitude about all of this. However, I've realized these aren't negative, and I wouldn't even consider them realistic, although they are. But they are more than that. When I truly see our situation, its obvious Mira has given us a gift, and with that is a strange (what feels like a mixed bag) responsibility. 

Living in the moment is sometimes the only way I can live this strange new life of mine. However, living in the moment is like this bizarre new muscle that has only recently grown inside of me. Its still so little and unsure of its strength. I flex it every day, and sometimes I can't lift much with it. Some days I don't even work it out. The responsibility comes in to play when I have to balance living in the moment with my hopes and dreams for Mira's future. A future that isn't promised to her. The responsibility revolves around loving a little person who may or may not be here for her sweet 16, who may not go to school or have a boyfriend and who most certainly cannot have her own biological children. I cannot tell you what runs through my head when I say things like-maybe Mira will be an actor when she grows up (she is pretty dramatic, if you couldn't tell). Other parents might say things like that without even a thought, but I am not one of them.

Maybe some of you might think its negative or counterproductive to think that way, and I totally understand and I might even agree. Yet, when I think that way, a whole new world opens up to me. Because honestly, when we all start out in the world none of those things are promised to any of us, and somehow we choose to forget that part of life. And that is where Mira's gift comes into play, because if I had a choice, I would choose to forget how fleeting all of this is. Heck, I still try to forget it, and when I do, I am brought back to my new life. A new life that will never ever let me forget this new lesson. 

And maybe that's the answer to my new game. It doesn't matter whether I am in the hospital or at home-loving Mira is exhausting and amazing and it requires a part of me I didn't know I had. A part of me who has ripped out her heart handed it over to God and to a little person who is fierce and pure and strong. Every so often, when I stop feeling sad for Mira or when I stop feeling scared for her future, Mira lets me know she has everything she will ever need in just that very moment of life she lives.