Our baby girl

Have you ever felt like your life was a movie and you were watching it from the front row, unable to know how the movie ends? We are there...and for most of the month of April all I wanted to do was yell "CUT!" over and over, but as life would have it, it just kept going.

I wasn't sure I was going to continue with my blog, but it seems a little like therapy for me, so I will. Bryant told me to keep documenting our life, because it is our life and we ARE going to live it.

So I will start from the beginning...

The first week of April, we went in for our BIG ultrasound. We were getting to find out if we were adding another rowdy little boy to this group or if pink, tutus and bows would be invading our house. I was 20 weeks and everything had been progressing perfectly. I was convinced it was a boy, mainly because my pregnancy was going so smoothly...just like it was with William. Within seconds of having that cold goo put on my belly, the ultrasound tech said that there were complications. Even typing it still makes my stomach turn in knots and a sick feeling wash over me. Bryant immediately grabbed my hand and was at my side, we had no idea what we were in store for...
She preceded to look and told us we would have a long road ahead, I would have a doctor and multiple tests in Birmingham, and I would be labeled high risk. We were speechless and I just wept. She then told us it was a little girl and she was going to continue to look at her and take some measurements and asked if I wanted her to turn off the screen....What??? No, absolutely not, this was our little girl and whatever the case we would treat this like we would any "normal" pregnancy!  Bryant finally asked what was wrong, and she said that all she could really tell was that her arms and legs were measuring significantly behind. She mentioned Dwarfism but couldn't make a definite diagnosis. I looked at Bryant and then at the ultrasound tech and said "Is that it?" because we could most definitely handle little arms and little legs! At that point we were so excited that we were having a little girl she could have had 4 arms and 4 legs and we would have been fine! We went in to see my doctor, and he said he wasn't going to make any assumptions or a diagnosis. He wanted our next steps to be to go for a further targeted ultrasound and see a doctor at UAB. I won't pretend we weren't shocked, because we were. We went from the ultimate high of finding out girl or boy, to immediately the lowest low of hearing something is wrong. We looked at each other and said we know that God is in control and He doesn't make mistakes, this little girl is OURS and she is ours for a reason, PRAISE BE TO GOD, regardless.

So for the next 4 days we waited, not so patiently I might add, for an appointment to be made in Birmingham. We had told ourselves and prepared ourselves to have a little person, and we were beyond excited for what God would do through her and through our family. We talked about having to hem clothes and laughing that William would have her in so much trouble...we were living life with our little girl, no matter how small she was going to come to us! While we waited for our doctors appointment, I went to New York with my step mom and we bought every piece of available girl clothing we could find, I am almost not exaggerating! Bryant was at home, cleaning out our guest bedroom in preparation to add another nursery to our home! It was exciting and we had just started feeling her really kick...life was going good.

The day of our appointment came around and in my heart I was anxious, but I just thought they would confirm what we already prepared in our minds for...a little person. After an hour ultrasound and 4 doctors later...we got what would be the most life changing news you could ever receive. Our precious baby girl had several fractures in her arms, legs and ribs and had what seemed to be a collagen and calcium deficiency. Her skull would press in just from the ultrasound wand, her legs and arms were bowed, and she was still measuring significantly behind. They told us she had a bone disease.

Osteogenesis Imperfecta.

Two words I had never heard of, that now hold the biggest weight I could ever possibly have in my life.
The doctor said she didn't have good news and I really can't remember much of what she said after the word fatal. Fatal...our little girl would have to fight for her life before she took her first breath. It felt like the biggest punch to the stomach, I couldn't breathe. All we could do was weep.

You know, we went in thinking our 2nd pregnancy would be just like our first. We have a healthy baby boy, and we just assumed we would have another. Looking back it's crazy how we take for granted the health we are BLESSED with on a daily basis.

Bryant and I, somehow, walked out of the hospital to our car and got back on the interstate. We pulled over at a gas station and we cried. We cried for our little girl and for the unknown road we were now embarking on. Bryant looked at me and said "we have only one rope to hold on to...and it's Christ."

I never knew how true those words would be.

We don't ask why us, we know that disease is part of the curse...the curse that man caused when we turned from God. We know that one day this will be made right when all things are restored through Christ. We know why God is taking us through this...it's for HIS GLORY. We don't know what it looks like or how it will look like and we are so uncertain of many things...but we are holding on to what is CERTAIN and that is truth!

I am not going to lie and say this isn't hard. It is the hardest, darkest valley we've ever gone through. There are moments when fear can creep in and take over and when grief is too strong to deal with. I have cried most days and our emotions stay on a roller coaster that doesn't seem to stop.

But even in the darkest of our days, we have joy. There is joy in suffering. Our preacher has been preaching on this for the past month....God's sovereignty for sure! He said Sunday we don't rejoice in the trial itself, but in what Christ has done. Our hope is in that. We know that because of what Christ has done, taking the wrath we so deserve, that we will one day be restored to what we were created to be. We will have eternity with Him, where there isn't disease, death, or sickness. Thank God we have more to hope in that what is here on this earth.

God has been gracious to give us precious friends and family, a church and an energetic little boy to carry us through. We daily see Him at work in our life and we know that our prayers are sustaining us. He has been faithful to give us grace enough to endure the day...no more and no less. We know that God is the Great Physician and that He can heal her...this is what we cry out daily. We are believing with everything in us that He can, and that He will. His will and plan are perfect and can't be thwarted, so we know if He chooses to take her home...she not only gets to grow up in the Kingdom, but our God is still so good!

In the past month, we have been in a holding pattern. It is such a hard place to be, because we don't know where to go from here. One of the hardest parts of this is the not knowing...I can't tell you how many times a day that phrase has escaped my mouth. "We just don't know." We don't know how to prepare, which road do you plan for? Bryant and I had a heart to heart last night, and if we are earnestly praying for her to be healed then we need to prepare for it to happen.

We are choosing to live life with our little girl. We are giving thanks for the precious gift we've been given in Henley Brooke and we are going to enjoy and fight for her as long as God allows. Carrying her has been one of the most gracious gifts I've ever been given and we don't want to waste any days of her life not embracing it! We aren't promised any time with anyone...it's by God's grace that we wake up able to breathe each morning, that the sun rises, and the earth continues to spin. Our family is learning to see that His mercies are new each morning and with those sweet gifts we are rejoicing!

Henley is kicking away as I type this...another reminder that she is ALIVE and fighting. She is a miracle, a gift and a daily reminder that God is knitting her and creating her for His purpose, just the way He wants her. I am a grateful momma.

I am thankful for this journey...for this season. It's not easy, but some of the sweetest moments with Him come when you are being refined in the fire.

This God- his way is perfect; the word of the LORD proves true; he is a shield for all those who take refuge in him. Psalms 18:30

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:9-10