Sunday, August 28, 2011

A different kind of Perfect.

That day in May, when I saw Audrey's face for the first time, I made a decision. I decided not to tell many people about her condition. Why? Well, her condition will probably NOT affect her life in a negative way. If I never told you about it you may never know she had a challenge at the beginning of her life. I want her to grow up with out any prejudices or assumptions made about her, and have every opportunity to accomplish her goals and dreams. Now that I've been living with her condition as a part of my, her, and our life, I feel that I need to expain more about what we face when she returns home. Also, I feel that I'm leaving out a bit of her story that is SO important for all to understand just how AWESOME God is.
Audrey was born with Cranial Mengocele Spina Bifida with Hydrocephalus. Because of her spina bifida she also has a Chiari malformation. Here are some definitions as to what that diagnosis means:

Spina Bifida

Spina Bifida is a type of birth defect called a neural tube defect. In spina bifida, a baby's spine does not close completely during early pregnancy.

Meningocele

  • A cyst made up of membranes, which surround the spinal cord, protrudes through the open part of the spine.
  • Spinal fluid can leak out.
  • The cyst can be surgically removed.
  • Development after surgery is usually normal.
Hydrocephalus
Hydrocephalus occurs when excess fluid builds up in your brain, most often because of an obstruction preventing proper fluid drainage.

Chiari Malformation
Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal.

Sure is a mouthful to say, isn't it? Basically Audrey was born with a fluid filled sac at the base of her skull. Since her fluid was protruding out of her skull, the skull has a little bit of a bigger gap in it around her spinal column than most of us have. I only have some basic information about her early months and hope to find out more when I go to China. What I know is that when Amanda got her, she was in a lot of pain from the pressure in her head. That was in December of 2009. In January of 2010 she was taken to a local hospital and had surgery to close the sack. She still was in pain and not well so a few days later a shunt was placed in her head to relieve the pressure. Since then things have gone well for Audrey. She is developing normally, though a little behind. Heck, she had brain surgery twice when she was two months old....I'd be a little behind if I had brain surgery. She should develop normally for her whole life and only we only expect her to have minimal restrictions....like not playing contact sports...which is fine with me. :)
We may have to have some physical therapy when we get home, we may not. We may have to have some speach therapy, we may not. She may have to have a shunt revision (brain surgery) when she gets home, she probably will not. The only difference we see in her is that she will have to visit a neurologist a couple of times a year to make sure the shunt is working. That is it. For someone left in a dying room when she was in the orphanage, she sure has come along way. Without God getting Amanda to Audrey, she would have been left to pass away. Without God providing her wonderful surgeons, Audrey would have suffered more pain and major brain damage. I've written before about how God has watched over her and blessed us with the Starfish Foster Home and Amanda. God has something amazing in store for this little wonder, and I can't wait to see what she does with her life. She had a rough start, and was not born under our definition of perfect. She is a different kind of perfect, and I think that is the best perfect, because she is the only perfect for me!

This week she recieved the scrapbook I made of me, Mom and Dad, Sophia, and her room. She also recieved a voice recoreded book that I read to her. Here is a photo of her with the books. Shang, the gal who took the photo, said she just kept smiling while looking at the book and while they were taking her picture. You can also see the chicken pox that she is recovering from.





Thursday, August 11, 2011

Shhhhh.....don't tell my mommy I don't look like her....

It may come as a surprise to many of you, but my daughter won't look like me. I know, I know, a shocker. The title quote for this post came from a t-shirt that is no longer in production. I saw it when I began the adoption process and am sad that I can't purchase it any more. As an adoptee, it was just luck of the draw that I happen to look like my Dad' s side of the family. I resemble them. I never had the uncomfortable conversation with folks who ask who my "real" parents were, nor did my parents have to explain to others what my country of origin was unless they told someone I was adopted. Audrey will not have that luxury. At all.
I remember a conversation with my friend Janene one night after a day of completing an online adoption class. " I'm not sure why they keep asking me all these questions about multi-racial adoption. My daughter is just from China, she's not of another race. We are not going to be a multi-racial family, are we?" "No, you won't be a multi-racial family," Janene replied, "Wait...." she said. And so began my realization that I will have a multi-racial family.
I knew my kid would be from China. I knew that she would have dark hair and olive skin. I knew she would be Asian. I just didn't think it was different. When you are looking through the eyes of love (you can thank me later for getting that song stuck in your head) I guess the differences doesn't matter to the Mom. What I had not figured out is that though I don't see our differences, the world does. Though I knew my kid could be purple with green polka dots and I would love her anyway, the world cares. Maybe because our family is different, maybe because they are racist, maybe because they don't understand how someone could love a child that didn't come from their body, I don't know. But people will notice, and have questions, and make snarky remarks. I'll never know where some people get their sense of entitlement to ask rude questions, but they have it, and they do. I would like to think I am prepared with intelligent, reasonable, kind answers to their questions. But I know myself and will have to really THINK before answering the ones I expect to encounter. And I will have to help my daughter with intelligent, reasonable, and kind answers to give as well. She will learn to answer these people from my example. And I hope I honor her with those answers.
Here are some questions and statements I expect to hear: (what I want to say is in italics, what I will say in regular font)
- Are you her real mother?  (Have you asked your mom if your dad your real dad?) Yes, I am her real mother!
- Where is she from? ( A town called Nunyabiznaz) Bethalto.
- Do you know her real parents? ( No, they didn't give me the serial number when they made her at the factory) Yes, I know myself quite well.
- How much did she cost? ( $1.25 - ON SALE!) She is priceless.
- Does she speak Chinese? ( She speaks 12 languages - a child prodigy) She is a baby and baby is the
   same in all languages.
- I don't understand how someone could throw away/give up a child! (when you were married to your spouse did your family throw you away?) She wasn't thrown away/given up. Her birth parents turned her over to God and trusted that someone could raise her and give her medical care.
- Your child is so lucky - you saved her. (She sure the heck is lucky to have me as a mom...I rock!) I
   didn't save her. God did. I just get to raise her!
I don't think that most people are out to be mean. The person asking may know someone who has or is adopting internationally or may be interested in adoption for their family. Most of the time, however, people are just curious as to why we look different. Or they may want me to know that they notice the difference. Or they are mean. Whatever. My family, my kids' story, is really no one else's business. All that matters is that I am her Mom and she is my kid. You that read this blog are priviledged to know most of Audrey's story because I love you and I am just so excited about her that I can't keep quiet. I want you all to know of God's provision for us and how He has made this journey just for His glory. There are things that I will not share with you because it is her story and I want to let her make the decision as to what she wants to share with people. Our looks are obvious, yes. But our story, her story, is one that is precious and not for public display.
I (hand on the computer, one in the air) pledge to answer intelligently, respectfully, and reasonably those questions that other people may ask of me and my family. Most of the time. I will refrain from saying, "So what if she is adopted, maybe you were a mistake." I will bite my tongue and not pretend I can't speak English. I will be kind and not punch people in the throat. But in the words of the great Ron White, "You can't fix stupid."


We are about the same age in these photos. Doesn't my Dad look groovy?