A picture of our girl

December 15, 2011

 

This is a picture of a picture, so it's not great, but she's still beautiful.

 

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His Love

December 15, 2011

Hey everyone. I just wanted to give you all a quick update on our appointment yesterday. It was good to see Mary, but as always, it was also really difficult. I was hoping for some small sign of improvement, but instead we found she has more fluid on her brain than before. As expected, her head was about three weeks behind the average head size for her gestational age. The rest of her sweet body is growing great, though. The doctor said there was really no need to do any more ultrasounds, especially since the visits can be pretty emotional. But, I asked him if we could do just one more before she’s born-just so I can see her again, and maybe see positive changes (I know that this would be a total miracle, but that’s what we’re going to keep asking for until there’s no need to ask anymore).

It was a really sad visit for Hayden and me. I am just so afraid of losing her, but I also know that God is big enough to handle my fears and doubts. I would love to share two songs that have recently been very relevant to us. The first is by Shane and Shane, called “Your Love”.  It just talks about how his love is big enough to carry us through anything, and even to bring good out of anything. The second is by Matt Hammitt. I’d heard the song probably 50 times but hadn’t ever really listened to the words. It’s a song he wrote when he thought he and his wife might lose their newborn son to heart problems. It describes perfectly our feelings for Mary, and also the struggle to completely open our hearts to her, especially with the possiblity of losing her. The links are below.

Shane & Shane, Your Love

http://www.youtube.com/watch?v=sJcaaU0opJA

Matt Hammitt, All of Me

http://www.youtube.com/watch?v=50ygAc2qP5A

One of my most favorite ladies, Kim Ransleben, tells me over and over again that when I get fearful or worried or dissatisfied (or impatient, or angry, or any other sinful emotion I deal with daily), that I’ve lost sight of my Heavenly Father; that if I can just place my gaze back on him, and see who he is, and who I am in him, all of the other things will grow dim, and really won’t seem like “things” at all anymore. And in truth, when we see Him for who he really is we become more and more like him-2 Corinthians 3:18 “But we all, with unveiled face, beholding the glory of the Lord, are being transformed into the same image from one degree of glory to another. For this comes from the Lord who is the Spirit.” So that is our prayer. That sweet Mary will help us to see him better, will cause us to press in to him, and not turn away. And that others will come to know him through her life, as well.

With all our love,

The Staggs

Well, I didn’t think I would EVER blog. And this may be the beginning of the end, we’ll see, but I really want to give it a try. I haven’t really decided yet what this blog will ultimately be about, but the main purpose of starting it now is to share with you our journey with our newest baby, Mary. Many of you know about Mary’s condition, but don’t really know specifics about it, or even what Hayden, the kids and I are feeling about it all (and I’ll warn you, this first post is going to be a bit long to catch you all up). In all of this, we want Christ to be magnified and honored, and I hope that this blog will show him off to you all a bit. God has always been faithful to us and He is now. And I want you all to know how he has already shown himself good and faithful in this trial. And my greatest prayer is that if you don’t know him personally, that you will begin to see him a little more clearly through our lives.

This pregnancy started off like all of ours have (with the exception of Ruby)…with surprise! I don’t know why we are still surprised when we discover we’re pregnant, but we are :). As always, the shock and disbelief quickly turned into excitement over another addition to our family. I had to take three pregnancy tests to convince everyone, including myself, that it was true.

With three kids three and under, time seems to pass extremely fast and slow all at the same time, but before we knew it, it was time to find out the sex of the baby! I knew even during the ultrasound that something was off, but I wasn’t really concerned about it. When the radiologist came in and told us we were having a girl, but that she had some major concerns about her health, Hayden and I both were shocked, but immediately started praying for ourselves and Mary (Hayden, as usual, named her right away, even before we knew she had problems). 

Thanks to our wonderful doctors, I was able to go the next day to visit a maternal fetal medicine doctor (basically, an OBGYN specialist), and have another more detailed ultrasound done. After a long two hours and, suprisingly, a good bit of laughing, we found out what we had feared. Mary had major neurological problems-the front part of her brain was missing and the back portion wasn’t formed correctly. Because of this, her facial features were also incorrectly formed, especially her eyes and nose. There were also other things about her body that pointed towards a genetic anomaly, most likely Trisomy 18 or 13. The doctor told us that regardless of whether or not she had one of these conditions, the brain issue itself would ultimately be fatal to Mary, and that barring a miracle, she wouldn’t survive after birth. We decided that we would do genetic testing to hopefully find out for sure what she had, and within a few weeks, we found out that she did indeed have Trisomy 13.

It’s hard to describe the way I felt when we first received that news. Truly, I can tell you that I didn’t and still haven’t felt any anger towards God about it. All I really felt in that moment was tremendous sadness. Praise God, up to this point, I’ve never really experienced tragedy in my life. I’ve heard about others’ sadness and even cried with them through it, but I was always an onlooker. For the first time, I truly felt the weight of grief, and I am so thankful for a Savior who knows my grief and carries it for me (please see Isaiah 53:3-5). And while I was overwhelmed with sadness, God lovingly put hope in my heart. Here is just a short piece of what I wrote in my journal shortly after that first specialized ultrasound. “We know that God is always faithful and completely good, that His love towards us has not and will never change. We also know that Mary has hope and a future. While she may not live her days here on earth, we know with absolute certainty that she will spend a tearless, disease-free, joyful and perfect eternity with her Creator and Savior–and we will see her again–Halleleuiah!”

Many people ask us, “What next?” I know some even wonder why we would carry Mary to term, when we know she won’t survive. But I can tell you that Mary IS alive now. She has been since God began forming her at conception in my womb. She kicks and moves, and she even smiles (we saw that on ultrasound more than once). She is our precious baby, our Mary. And more than that, we believe in a God of miracles. He is the same God that spoke this universe into existence. The same God who created you. And me. And Mary. We ask him daily to heal her body and I want to wait until he answers us “yes” or “no”. And I am realizing more and more every day that EVERY single baby that is conceived is a miracle, and Mary is no exception. We want to spend every minute I can with her.

We do have another ultrasound this coming Wednesday. I’ll update the blog soon after to let you all know if anything has changed. Thank you so much to all of you who are praying. We have never felt so loved and cared about as we have the past several weeks. I want to share more about that, and how we’ve seen the body of Christ in glorious action, but it will have to wait for a later post.

With all of our love,

the Staggs