Wednesday, September 25, 2013

This is Better

You have joined us from near and far on this journey to give Amelia the life she deserves and been faithful to pray and love us well, so I've wanted to update on how she is doing and how you can specifically pray for her, but there just hasn't been much new information.

It has been a slow process of the doctors getting to know her and figure out her extreme specialness and come up with a good plan. We are still waiting on some tests and evaluations but so far it seems to everyone like she has extreme Amyoplasia, the most common form of Arthogyposis.  As simply as I can explain her diagnosis and prognosis, her arms and legs have very little to no muscle in them at all so they have never moved in or outside the womb and as a result both arms and both legs are constricted and extremely displaced. The doctors do not believe that she will ever be able to move any of her four extremities but are hopeful that with extensive physical therapy and possible eventual surgery, that she will be able to comfortably sit in a wheelchair and enjoy a happy life. She is a perfectly healthy baby except for her 4 limbs and the doctors have no reason to think that will change. She is cognitively normal, her organs and stats are perfect, her 4 limbs are just very abnormal.


The scariest issue for us is her fragility.  We were prepared to deal with her precious and unusual frame, but Friday we learned that she is also incredibly fragile when one of her baby arms was broken during a simple procedure to put a new IV in her arm and then her other arm was broken later that day by a nurse simply lifting her arm to take her temperature.

They are starting to talk about sending us home because she is so healthy and I am basically here 14 hours a day totally taking care of her without help from the nurses. So we are trying to prepare for life at home with a baby with limbs as fragile as glass, who can not wear clothes or be strapped into a traditional carseat because the bones in her arms and legs are the thickness of toothpicks and so deformed. It's honestly not as overwhelming as you would think. If you told me 3 weeks ago that this would be my life today, I would hyperventilate, but a funny thing happens when God holds you in the palm of His hand. When He calls you to it, He takes care of it. You know that peace that passes all understanding? It's a real thing.

Don't get me wrong. I've had some freak out moments. I'm human. I want to make sure that I am not going to ruin Averie, Austin Kate and Atalie's life. I want to make sure that Amelia isn't going to freeze to death since no one can tell me how to put clothes on her. I don't know how her car bed is going to fit into our car that wasn't even manufactured in this century. But those brief moments of fear pass when I think about the thousands of tiny miracles that have brought us to this place. God is in the details. He's already there. He's got it all worked out.


I prayed boldly before for her birth for her to be healed from all of the things that make her less than whole medically. I prayed that she would come out kicking and screaming, thrashing around with both arms and legs and that we would bring her home the next day. I promised that we would praise God's marvelous name for miraculous healing. But I knew in my heart of discernment that His healing wasn't coming.  I knew in my soul that my Amelia was going to be more useful to God and His Kingdom like this, and I'm ok with that. It's a hard place to be as a Mommy, to say "OK God. I know she's yours first and you know what's best so if you need to leave my baby broken to use her and to use us, let's do it. You're just gonna have to carry me through it."

If God had healed her, like I begged Him to, we would have praised Him and brought her home and gone back to our easy lives.

But this is so much better.

Instead, she is our rubber cement to God for the rest of our lives! I will never, ever be able to get far from His mercy and grace and guidance because I can not get through a day or an hour without Him.

This hard stuff, this messy stuff, this scary stuff, it's good.

A lot of people don't understand it. Some people think we are crazy. A few people have said hurtful things. We are tired, my house is a mess, we don't know how we are going to pay for all of it and we don't know what the future holds. That's fine. We have an audience of One and He holds the future and we know we are doing what He has called us to do. We have shared Amelia's story, our story and most importantly the GOSPEL - because, please, I never want anyone to think this is about us or even really about Amelia, this is all about CHRIST -  with more people over the last 2 weeks than we ever have. We will never know the number of people who have been brought to Jesus or closer to Jesus because of this amazing baby girl and God's sweet mercy and amazing grace until we get to heaven and Jesus shows us Himself. That makes falling into bed exhausted every night for the rest of my life and this hard stuff worth it.

As I look over into her crib at this little pink bundle of love that by the world's standards is broken, and I think about the journey to get her here, I know that she is beyond perfect. This is perfect. She is exactly what we needed.  I think she is exactly what we all needed and God knew that. His ways are not our ways. They are SO much better.

5 comments:

Kim Abernethy said...

The physical fragility of Amelia will forever remind me of our spiritual fragility while sojourning on this earth. God has, is, and will care for the broken. Physically or spiritually. Stay cemented to HIM. Much love, Jeff and Kim

Anonymous said...

I know we dont know each other...But I learned about your story...praying for you and thankful for your courage. Praising God for what he will do in Amelia's life.

Greg and Ruth said...

Your story is powerful. Amelia is special, but your family is as special...just in a different way. We're praying for all of you.

Susan said...

Jaime, I cry every time I read your updates. We continue to pray for you all. I know your hands were full before you adopted precious Amelia. She has no idea that she has been adopted into the sweetest family ever. One luck little girl. I love you!

Anonymous said...

What a precious addition to your family. I am fb friends with your sister and stumbled upon your blog. God blessed our family with a precious special needs little boy. He was born with spina bifida and is paralyzed from the knees down. He is the light of our family and our girls are crazy over him. Our life is very different from the picture perfect life I dreamed of yet, it is good and blessed. I will be following and praying for you all on this journey of faith. Julie
Julie-thegiordanos.blogspot.com