What's in a diagnosis anyway?

So it looks like Marie does not have Trisomy 18... well, there's about a 1 in 10,000 chance at this point.  I had a blood test called cell-free DNA testing.  It checks for Trisomy 13,18,21.  It doesn't diagnose, but tells you if you have a high-risk or low-risk for these disorders.  The test came back saying that Marie is at low-risk for T-18 meaning there's about a 1% chance.  Now, I'm not big on percentages these days since there was like a 1 in 2000 chance that I'd even have a baby with a chromosomal disorder in the first place.  But, I still lean toward believing the test.  This could be taken as good news, but it really doesn't matter.  The prognosis is the same.  She still has a lot of markers revealing that SOMETHING is clearly going on.  It threw me for a loop at first... what am I supposed to think about this?  Is it supposed to give me hope? Or are we just not supposed to know the diagnosis?  The news was unsettling at first, but now I'm back to normal-my new normal that is.  It is what it is at this point and we still just have to wait and see.

She was just giving me a little treat... kicking me like crazy. :)  I didn't want to move! :) But now her big brother is up from his nap and singing the ABCs in his crib.  Time to get moving! :)

I found this article somewhere today... can't even remember from where and it was just a few hours ago.. anyway, here it is. Check it out... beautiful, sad, inspiring!

Fame

I have 14 comments on one post and 4 followers! Woo hoo!  I feel like a celebrity... kind of. :)  I just wanted to check in quick and say thank you again to everyone!!! I can feel your prayers and support surrounding my family and I can't tell you how much it means to me.

I also want to thank Mrs. B over at Joy Beyond the Cross.  Her post was humbling, encouraging and so filled with love.  I was just floored when I read it.  If you haven't already, check out her inspiring, honest and love-filled blog when you get a chance.  She is one of the very first people my husband and I met when we moved here and we fell in love with her from the start!  She has always been one of our very favorite people.  Like she said, we don't talk/see each other often, but when we do it is like no time has passed.  When she found out we were engaged 4 years ago, she sent us a prayer book immediately. It had been months since we had seen her.  One of the many examples of her generosity and kindness!

Planning to write more soon.  It has been a good week.  Between appointments, life morphs back into a bit of normalcy for awhile.  The pain and fear is not at the surface, but buried just a bit deeper, making it a little easier to forget for awhile.  Prayers for all of you!!

Much love,
RMB

Thank you!

Wow... a BIG thank you to Rebecca over at The Road Home. And to all of you who have offered your support, encouragement and prayers. This morning I checked my email to see a few more comments on my blog which is always exciting. As I read through them, I noticed a theme, people were coming over from Rebecca's blog. I thought, "Wow, I wonder if she added me to her blog roll. Cool!" But when I clicked over to her blog, I was moved to tears when I saw a whole post dedicated to my family. Thank you all again. I had a MUCH better day today and I know it was because of your uplifting prayers!

This blogging world is amazing and I feel truly blessed to be a part of it.  My first real exposure to it was back in March when I went to the Behold Conference.  I meant to write about it back then but never did.  Now here's my chance!  I traveled with a friend of mine who I knew long before either one of us had a blog. She is actually the one who really encouraged me to get going on my blog!  Anyway, she was really excited to meet up with a number of her blogger friends.  I can remember the joy and excitement in the room when two other bloggers walked in.  It was as if they were neighbors who had just seen each other a few hours ago. They talked and laughed and reminisced about stories and other bloggers.  When my friend and I were alone again later that night, I asked how many times they had met in person.  "Oh, she said. This is the first time!"  I couldn't believe it!!  They had a deeper connection with each other than I do with many people who I have spent time with for years.  I saw this same scenario repeated time and time again. When people would introduce themselves, the first question was about where I blogged.  I loved it.  So foreign to me.  Now, I am swept up in this wonderful support group of bloggers, friends who so willingly give their love and support to someone who they have never met, but who they see is in need.  Thank you, all, so much.  And please know of my prayers and love for all of you!!

RMB

Family

The last few days have been very emotional. We went to a family reunion on my dad's side-lots of cousins, aunts and uncles, laughter and tears. We had sent out an email about a week earlier, so every one knew what was going on with us. Friday went well. Lots of hug and supports, but no tears. We were all just happy to see each other. The last time we were all together was four years ago for my Grandma's 90th birthday party. This weekend, we celebrated her 94th. On Saturday, we had a Mass, where I did a reading. We arrived right before Mass and I did a quick look over of the reading. "Really?" I thought. "This is what I'm supposed to be read?" It was all about suffering and asking God to take away our afflictions. I started to tear up a bit, but thought I'd be ok to read it.  I wasn't. I was about halfway through when the tears started coming. I made it through... barely. I was doing ok until the petitions, when my sweet cousin read a petition for us and started crying herself... cue tears again. It's not over yet. At the end, my dad had a few announcements for the group. He talked about my Grandpa and Mom who have both passed away. He started tearing up and there was no way I could hold it together after that. While it was extremely emotional and difficult at times, it was so healing to be surrounded by family, enveloped in loving hugs-sharing our tears of sadness together.

I am so thankful for the blessing of such a loving and supportive family to help us through this time. They lift me up and keep me going and remind me that we are not alone on this earth- God has given us so many people to help carry us through.

Forgetting

Every once in awhile I forget that our unborn baby girl has a terrible abnormality that is ultimately going to kill her. I do the normal day to day things-washing the dishes, playing with my son, making dinner, and then, it all comes back in a rush. I see a picture of a baby, see her name somewhere or I just... remember. It's nice to forget for awhile and think that we are normal again, that we aren't facing tragedy. But when I remember and come face to face with reality, I also remember that my daughter is a gift from God. She is a precious life who I already love more than I could ever imagine. This is what I need to remember, this is what I need to let take over so that I can enjoy my time with her and rejoice over the beautiful person growing inside of me!

RMB

Bittersweet

That last post was a little intense. I'm not used to share my innermost feelings and emotions with, potentially, anybody. Yet, in that moment, it gave me a release and felt right. Also, if I am going to truly chronicle these events and these feelings, I need to be honest. And if one day, it all helps someone on their own difficult journey, then all the better.

This journey is full of both bitter and sweet moments.

Feeling Marie kick and move inside of me is so sweet, with a hint of bitterness. Every time I feel her, I have an overwhelming sense of joy and love. I guess it makes me a little sad, too, but not as much as I would think. Feeling her move reminds me that she is still with us and that I need to enjoy every kick, every moment that I can with her. She is my sweet, beautiful daughter and, right now, she is with me.

Today I held our neighbor's 2-day old baby girl. She is beautiful and precious and perfect. Holding her brought so many emotions. I was so happy for them and for this beautiful life, but so sad, too. I was sad for myself, but mostly sad for what would not be. My neighbor and I have shared our pregnancies the last few months-the joy, the pain, the anticipation. We've talked about how perfect it is that our first-born sons are only 5 months apart and next babies only four. We were excited when we found out we were both having girls. Now, I can't help but be sad knowing that our little girls won't get that chance to play together, laugh together and share secrets.

I take joy in the sweet moments and cling to the Lord in the bitter moments, because without Him, this road would be unbearable.

RMB

Denial

This isn't really happening, right? It can't be. We can't be losing our baby.

I have spent today caling different people about planning our special birth. I had a conversation with my brother about planning for her funeral and burial. On the outside I say things like, "I'm ok, we have to talk about." "These things need to get done." But on the inside my heart is breaking and I feel crushed by the weight of this pain. I want to sleep, watch tv all day and not think about it. But I must face the reality as the world goes on and around me. As my almost two year old clamors for my attention and gives me more joy and love then I could ever imagine. I must cling to the Lord and depend on his strength, not my own.