Monday, May 19, 2014

Requests - Prayer, Dresses, and Being Aware of One's Surroundings

I posted the following on Facebook earlier today, but I've added a little bit to it....

First, thank you for your prayers. We went to my hometown this weekend and saw so many people that told us they have been praying for us since they found out. It is absolutely humbling to hear that still and yet incredibly awesome to see the body of Christ at work, not only in my hometown, but across the country.

We still ask for your prayers at this time. We want you to know that we both desperately pray that she is the miracle that defies the odds, but at the same time, are trying to prepare ourselves for what is most likely to come. In the meantime, keep praying for us because we mostly pray for Lily. We pray for her healing, whether here or in heaven. If she's healed in heaven, then our prayer is that we have an opportunity to tell her we love her before she goes.

As for us, I'm taking the bar again this summer. I'm looking forward to throwing myself into the law. Brandon is working always and continuing his PhD classes. Pray for our strength and to find the good in the bad. I do not want her time with us to be mostly sadness. So pray we have the courage to fight for good days and to turn to Him during this season. Pray our stress levels remain as normal as they can be in this situation so I don't go into labor early because our doctor does not want to prevent labor due to the complications that can occur with our situation.

Our families can use your prayers as well. This is not what we imagined for our first-born or any child for that matter. No one ever does, but they are standing beside us through it all.

Pray for our doctor. We have found a wonderful specialist in Arkansas that has our backs. He is straight-forward and entertains no bull when it comes to my health and is the most compassionate doctor we have met in some time.

Lastly, some statistics. Lily has full Trisomy 13, not mosaic. A lot of people have asked about that. There is a difference and we love that you are researching what we are going through this time. Lily's diagnosis was confirmed by two ultrasounds and an amniocentesis. We didn't find out about this through a blood test. A good website is trisomy.org and any educational articles are as well. Stay away from WebMd because it lists things that are inaccurate.

I don't know if I've mentioned what her defects are, but I'm too tired to look back at my blog at this point. We have been told she has a congenital heart defect in the form of missing the lower two chambers of her heart. I don't know a lot about CHDs, but her problems don't end there. Her right and left side of her brain are fused together which causes major problems as far as her brain communicating with other parts of her body or in some cases not at all.

Finally, as you can imagine, our view on the world has been changed for forever. The biggest things that we have realized is to make the most of every day and to tell each other we love you. We want to encourage you to do the same.

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Dresses - I am looking for two smocked dresses. Both of which I'd like to be pink. I want one with lions and the other with turtles on the neck. I'll need a newborn size.

I want one for the hospital and one for her funeral. I haven't really been able to look at kids anything because it's too hard. I waited to buy pretty much everything until we knew what we were having. My sisters, mom, Karen, and the committee were just waiting to pull the trigger. And then, well you know.

So if you're into smocked dresses, I would really appreciate your help in finding the two I've mentioned. Some day, I'm sure I'll be a smocked dress guru, but that day just isn't here for me right now.

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On Being Aware of One's Surroundings 

I'm not really sure how to start this section. I want anyone that reads this to know that I come from a place of love.

People aren't really sure what to say. That's the one thing we keep seeing. We still can't believe we are in this. I know that people don't want us to hurt and wish they could take it from us.

But dang...sometimes, people have foot in mouth disease.

A good family friend of ours is one of the first people I went to see after we found out about Lily. She had a little boy named Jordan that was stillborn. Her daughter's husband also came from a family who suffered a loss with a stillborn baby. Her name was Zoey. His dad called it the gold standard of misery when they lost their little girl. And he is right. This experience will be our gold standard of misery. I've learned that pretty much everything else is a minor inconvenience in comparison.

I don't want to sound condescending or come across as preaching. In fact, this will be the only time I mention it. The rest of the time if I see others complaining, I'll likely just take a break from social media. I just think it's worth me speaking up on my behalf and others who will experience this hell behind me.

But here it is - Be aware of your surroundings. 

Everyone grieves differently. Just because someone doesn't talk about it all the time, doesn't mean they aren't hurting. I'm at the beginning of this so things are going to hit me harder and more frequently right now. But these are just a few things I've seen.

  • Telling someone you know that has a perfectly healthy baby is something that person deserved is a knife in the gut for me. NO ONE deserves anything - healthy or not healthy -  in a child. Each and every one of them is a gift from God that has been entrusted to you as a parent for a short while. Plain and simple.  
  • Telling someone to not worry they can have another baby is hard to hear. I wanted and still want Lily. 
  • I've seen a ton of people complaining about various things regarding parenthood. And it's a hard pill to swallow. I would do just about anything to have your problems. I realize that all moms will grow weary at some point in their job, but be grateful that sleepless nights and nap refusals are the worst of your problems. 
  • Telling someone they knew someone who faced what we did, but had kids and they don't know how they made it otherwise.
I realize that everyone has their own battles they face and it's why I struggle even writing this section. You may not be in my situation, but I am certain you probably have your own gold standard of misery. I know tons of momma's that have faced infertility. I have a good friend that finally pregnant with twin boys and I watched her cry and be upset by for almost three years by people that didn't think about what they said. She is thrilled to finally be pregnant, but don't think for one second that she isn't mindful of those around her still waiting for their turn.

And that's all I want. I just want people to think before they speak and be aware of his/her surroundings.

I hate that this is my story now. I went to sit down to write this blog post tonight and I wished that I had a funny story to share instead. But that's just not where I am right now. Some day it will happen again.

In the meantime, I hope this finds you well and with those you love.

Tuesday, May 13, 2014

Mama said, there'd be days like this...

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.

HOWEVER.

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.

Tuesday, May 6, 2014

"And though she be but little, she is fierce."

A few of you have asked what her name is, so that you can pray for her by name.

Back before we ever knew anything was at risk, we were struggling with names. We had lots of names that we liked, but couldn't really match up on how we wanted them to go. We had a boy name for a bit and then we just didn't really discuss a girl's name. The committee (aka the group text that consists of me, my sister Jessi, and our friend Jessika) informed me that I'd better get on it.

Brandon and I wanted our baby's name to be a surprise of the day. We planned to only give initials until the big day, because we wanted to introduce our girl for the first time to our families. That's how you meet people anyways. Plus, we really didn't want to hear any "Oh I don't really like that name" business.

About three weeks ago, we decided that we were for sure on a first name for our girl. It met our criterion - a family name (my great-great-paternal grandmother was Lillian), very feminine, and depending on the middle name she'd have a nickname as well.

And for those of you that have read my blog for awhile, she was even a Gryffindor. In fact, she's named after one of the bravest of them all. I loved it. The thought of my girl being brave and strong as part of her legacy was something that I was going to be proud of when she grew up.

Her first name is Lily.

Then April 24, 2014 happened. On Friday afternoon, Brandon and I were alone for a little bit and I told him that I still wanted to name her Lily.

She was still all of those things we had talked about.
She was still our girl.
She was still our Lily.

Lily means purity or innocence. It never occurred to me to look up what her name means until right before we had that conversation. When I saw that it was crushing, but it also was her.

Her middle name is Faith.

In short, her name means Pure Faith.

But this little girl has a lawyer to be for a momma. So you know there is more to the story.

Brandon and I couldn't agree on her middle name before we knew anything. We both liked our options, but favored one name over the other. I told Brandon that we should hold off on the middle name and see what happens. I further said that we would know what to do.

Well. I can tell you that we didn't know what to do when we found out.

When we saw my doctor's partner, she mentioned that we should take the weekend to sleep and think about the questions we would have. We didn't need to worry about our next stops and options until we had an official diagnosis.

When we went to see the specialist on Monday for our amniocentesis, he told us that we could carry her as long as we could or we would be eligible for early induction since she would have a condition that is "incompatible with life."

I'm going to level with y'all. At that point, I didn't really think I could handle carrying her.

The abnormalities the doctors were seeing were not good. A normal brain has two sides that mirror each other. Lily's looks like it's fused together. Lily's heart abnormalities lead the doctors to believe at this point she will have a congenital heart defect. Most of the time, they have a whole other host of problems to go along with what I've mentioned.

Say what you want, but I felt like my girl was suffering already. I didn't and don't want that pain for her.

All the happiness and dreams I had for my girl were gone. I thought about being further along in the pregnancy and people asking me what we were having and when we were due and are we excited and everything else that's supposed to be happy with pregnancy.

And thinking about those hypotheticals were hard for me.

I don't want to be the girl who had a baby born with Trisomy 13. 
But I am and it hurts. 

I want to be the girl that is a first time momma with a healthy little girl on the way.
But I'm not and it hurts.

So while at the specialist, I asked what an early induction would look like. I needed to know.

I realize that is quite the sentence to read. But it was something we had to take into consideration.

After the amniocentesis on Monday, we began the waiting for the official diagnosis game. At the time we were looking at an induction that weekend.

On Tuesday, I woke up thinking about Hebrews 11:1. For those unfamiliar with this verse, it says, "Now faith is being sure of what we hope for and certain of what we do not see."

I told Brandon that I thought we should call her Lily Faith because I felt like this was going to be "the test" for us in our lives. We were going to find out what we are made of and I wanted her legacy to include that.

He readily agreed.

On Tuesday night, he went to bed wondering if we were doing the right thing with the early induction. He didn't say anything to me. But he prayed about it.

On Wednesday morning, I woke up thinking about it. I felt like I couldn't breathe. Not because I wasn't getting enough oxygen, but because I felt like I was carrying a huge weight. We got out of the house and at times I felt like I could spontaneously combust at any moment.

I told Brandon that I didn't know if we were doing the right thing. I just wondered if I was playing God. He just sat and listened and let me talk. He told me to pray about it. And that was it.

I felt better, but I knew I needed to talk to my dad.

Jesus had an inner circle of three. His circle was Peter, James, and John. They were his closest confidantes.

For me, it's Brandon, the Jessica/ka's and my dad.

I knew I wouldn't make it through the conversation without crying. I needed my dad to not have to translate crying daughter conversation. So I texted him. I let him know that we hadn't heard anything on the results yet.

And then I asked the million dollar question, "Are we doing the right thing?"

My dad told me that was our decision, but that he was so heartbroken that we were in this place. The loss of dreams and hopes just made him ache for us. He told me that the loss of a child was something no one should have to endure.

I told my dad that I felt like I was carrying a weight around because I still couldn't believe what we were facing. The doctors could be right. And they could be wrong. But even if they are right, I was still looking at making decisions that no one should ever have to make.

And my dad said, "It's almost like God is saying, 'Do you really trust me?'"

I was bawling at this point. I told my dad that we shouldn't do this based on convenience. I felt like if we wait, that God would honor that. Even if Lily had it, God would still bless us.

And he said that he agreed with that. Then he said, "Sometimes we think we have it all figured out and God says, 'Hold on, that's not my plan.'"

I knew that it wasn't God's plan for us to be in the hospital that weekend.

My dad said, that if we went through with the induction, we would always wonder. If we do our part, and God still takes her home with Him, that we would be doing what we could for her as her parents.

I told my dad her name.  I told him that I felt like I've got the faith of a mustard seed right now. But it's there. God needs to be honored through her with that. I told him, "I just think that if the doctors are right about the trisomy 13 diagnosis and she goes to be with Jesus after all of it is said and done with, then so be it. And if we have to scramble to buy everything under the sun because the doctors were wrong, it'll all be okay. I don't want her to think that I ever gave up on her as her momma."

My dad told us that no matter what, he would support us. He knew that if we were headed for the worst, we would be okay.He said that he'd continue praying for us. He also wanted to tell the family and Dick and Karen.

At the end, he told me that he had always loved the name Lily.

I talked to Brandon after the conversation and I told him that I wanted to give Lily the best and safest home while I could. And we cried.

It was the lightest I had felt since we'd found out.

So that's the story of my girl's name.

Like Shakespeare said, "And though she be but little, she is fierce."

She's my brave little lion.
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Hi y'all! The name's Samantha. You can call me Sam if you like. I am a lover to a boy I met at Falls Creek in the summer of 2005, that is a student of Jesus, a Sooner born and Sooner bred and when I die I'll be Sooner dead, Democrat by party, blonde to the core, and oldies but goodies kind of girl.
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