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.
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.
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.
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.