About two weeks into this deal, I got tired of seeing people I knew. Because I was faced with two options, either they stared knowingly and said nothing. Or they asked, "How are you doing?"
I told Brandon that I was happy I don't know anyone in Arkansas because I can hide. That hiding only covers me so much.
The odd thing is that I'd rather people ask me, then not. I know the ones who don't ask are probably afraid they'll make me cry. It won't be the first time and it won't be the last. And quite frankly, I've already heard the worst part. I just haven't experienced it yet.
Yet, the question remains.
So here is my response for now.
Some days I feel like I am wounded from being shot, my heart hurts so much. The worst part? I know there is another shot coming and so I feel like I am staring down the barrel of the gun, just waiting for it to fire. It is absolutely heartbreaking and devastating to know the closer I get to the end of my pregnancy means the closer I am to saying goodbye. Before I knew about Lily's diagnosis, I thought this pregnancy would drag forever, and now I hold my breath waiting for her to kick every day, so I know she's still with me.
My heart hurts so much I feel like I'm suffocating.
Other days, I am mad. In fact, I'd say I have a lot of mad days. I'm a type A planner. There have been many times where my ways were not the best ways. But every time, God's plan has worked out even better than I could ever imagine.
Well let me tell you. Me winding up with a baby that is going to be with Jesus does not seem like a better way to me. I don't want her to be an angel looking out for me. I want Lily to be with me. I know God knows that. And some day I'm sure I'll learn why. But right now? I'm mad. I'm "that girl" who has a Trisomy 13 baby and there's not a damn thing I can do about it. And there's no explanation for it either.
You know, when a child dies from abuse or a tornado or in a horrible accident, it is absolutely awful. But at the end of the day, there is a cause.
I don't have anything or anyone to point to on this deal. The doctors have told us that this is just something that happens. It's awful, of course, but there isn't anything that we did. We have been told that over and over again.
WELL WHO DID? AND WHERE THE HELL DO THEY GET OFF?
And please don't misunderstand me. I'm not trying to say the children lost in the situations I mentioned aren't awful. Because any loss is devastating.
But I just can't make heads or tails of this. We are figuring out things like where she'll be buried, who will do the service, what we want her to wear in the hospital and for the service, what funeral service to use, writing a birth plan with contingencies that include her born alive and stillborn...and the list of the terrible awful goes on and on.
We should be daydreaming about Christmas time and Thanksgiving. Figuring out how we would bust up the trip because she'd be a newborn and she'll need to nurse. Figuring out how we'd do Disney next February for my sister's cheer trip. My doorstep should be exploding with dresses I've bought and I should be talking about shower invites with my sisters and mom. I should be daydreaming about what she will be like when she grows up. I should be planning for her first OU football game. I should be teaching her about good music and great films.
And I'm not.
Then there are other days, where I am just zoned out. I don't really feel much of anything. Lily is always on the surface of my mind, but it's almost as if my mind won't let me think too hard about it. It's as if my body is trying to help me cope.
Finally, there are the "good" days.
When I would get stressed about law school I had a mantra "It will all work out. Just breathe," and like Peter Pan, I had a happy thought that could calm the worst stomach aches, anxiety, and make me feel like I could fly - a baby.
The last of my childhood is gone. I know that might sound silly for a 29 year old to be saying, but when I thought about what my future looked like with our first little one, I did so entirely from my imagination. I've read about it on blogs, books, watched movies, watched it with my younger sister and brother. But I've never experienced it. It was one of the last rites of adulthood. And it is supposed to be happy.
I can't get that back. I'm different now.
I want so desperately to be happy for Lily. I don't want her entire life while inside of me to be sad or upset. She is still a miracle. I want her to know love her entire life.
So I fight for that, every hour of every day. Sometimes I don't do well with that fight like I mentioned and other times I do okay.
But I'm not giving up. It's just not who I am.
And then there are other times, when I need to act like this really isn't happening. The committee and my family are really good about just letting me be. They know when I need to talk and when I want to be a "normal person." While it might sound crazy, some times it happens simultaneously. I don't want to lose me in all of this. I still have a purpose and if I lose me, I lose the fight and that's just not an option.
So that's how I am doing. If you know me in real life or just through my blog, don't be afraid to ask. You might catch me on a good day or you might catch me on a bad day. But when you ask me, you're acknowledging me, and more importantly, you're acknowledging my sweet Lily girl. Ask my family about it as well.
Not talking about Lily is not an option for me.
Even though I struggle with all of the above, I want you to hear me when I say this: I still believe in God.
Like I said, some days I'm mad as a hornet, but that doesn't mean that I'm not talking to Him.
On those days, I'm just yelling at Him.
On most days, my prayers and conversations are just a lot of the same lately. No one in this world wants her to be a miracle baby more than me and I tell Him that.
But in the last days,my prayers have shifted. I read Angie Smith's "I Will Carry You" recently and she talked about how Mary and Martha sent word to Jesus about Lazarus in John 11. They didn't ask Him to do certain things or meet certain needs. They told Him the problem and left Him to work.
I've been praying for healing here or in heaven. I've been praying for time with her. I still pray for those things, but not as much as I used to. He knows what the desires of my heart are.
Now I wake up in the middle of the night with John 11: 3 "Lord the one you love is sick" on my lips.
I don't know how the Great Physician is going to heal Lily yet. God is bigger than a 100% diagnosis. I truly believe that.
If He decides that healing Lily looks like her going to be with Him, it'll be okay.
Some days it'll suck like hell. On those days, I hope there are those praying for me to have peace and rest in the fact that I'll see her again healed and whole.
In the mean time, I'm going to let God be God and get busy living to the best of my ability.
the reason why it’s deeply okay — to not be okay
18 hours ago