Perseverance Personified

June 20, 2015 arthrogryposis, Family Stories, June 2015 Feature - Orthopedic, Orthopedic 2 Comments

I’ll never forget the first time I saw Olivia. I worked night shift then and would often stare at sweet faces when it was slow. There were so many. I often would get overwhelmed and quickly close the page because I couldn’t look at so many big brown, solemn eyes, without a feeling of loss. 

A couple of times I requested files and prayed about the beautiful little girls. However, for some reason, we didn’t have a peace with them being our daughter, so I returned the files. We began the adoption process in February, 2012. By August our homestudy was close to being done. We hadn’t found a child yet and were thinking we would wait until after LID to be matched; however I didn’t have peace with that. I kept thinking, why wait for them to match us when there are so many children staring me in my face?

I went back to the agency’s listings of special focus children and saw a little girl named “Loralei”. She was lying on her tummy with a very serious look on her face. The need listed was “clubfoot”. I immediately asked for her file – didn’t even think twice – and yes it was in the middle of the night, while I was at work. 

The next day I got the file. I remember scouring it multiple times. I sent it to a friend of mine that was guiding me through the craziness of the adoption paperwork and she said I needed to ask a couple of other moms to review it. One had adopted a child with clubfoot and one that adopted a child with Arthrogryposis (AMC). I had never heard that word before, she said it can be affiliated with clubfoot. She also said, that there was probably something else going on since she was already 2 and special focus. If her need was really just clubfoot, she would probably had been adopted already. I said ok and sent the file to the two women she recommended. 

The mom whose child has AMC replied and immediately I knew there was more. She said, “I don’t understand why they’re commenting on her hips. There is no need to comment on her hips, if it is truly just clubfoot.” She said she thought I needed to have a doctor familiar with AMC review the file. So I sent the file to a doctor she recommended and his reply was, “I think she has AMC, she has dimples in her knees and she isn’t walking. Kids with just clubfoot can walk, even on the top of their feet. If she isn’t walking, then there is most likely more going on……” There was also another question I had about her file, so I requested an update, the file was a year old. 

Of course all of this is happening over a few days, so in my waiting period, I prayed. I prayed a lot: “God please give me a sign.  Is this our daughter?” I also asked myself two questions: 1. Would I be ok with the possibility of her never walking? 2. If someone else wanted her file right now and was going to move forward with her adoption, how would I feel?  Would I graciously give it to them, or would I say No, she’s mine?

My answers were always the same…..

1. Yes, I would be ok with her never walking. 
2. I’d say No, you can’t have it!

Now, even though I would answer these questions like this I still wanted God to give me His answer. I needed something more concrete than just my selfish thoughts….

I received the update on the file two days after I requested it. It was a video In the video the little girl is sitting in a playroom babbling….she stops talking and looks away from the camera for a few seconds, then looks back and says “Mama”. 

That was it, that was my sign, my wink from God that this was our girl! She then tries to stand up and is unable to. I also knew then that the doctor was right. Her knees were affected and she could not stand or walk. But that was ok. She was our daughter. I talked to my hubby that night and told him all my thoughts and prayers and he said he hadn’t stopped thinking about her either and wanted to bring her home!

Arthrogryposis is a congenital joint disorder that can affect ANY joint in the body, even the jaw. The cause is unknown, however there are many theories to why it happens, like low amniotic fluid or little room to move in utero. It is also found in many different syndromes.

We wouldn’t know the extent of Olivia’s AMC until we saw her. My biggest concern was her hips. When we got her I remember thinking how little she was, she was almost 3 but looked to be about 18 months. I tried to wait as long as I could to take her shoes off and investigate her feet, they were significantly clubbed. Her knees would bend but not straighten, so she crawled well, and her hips seemed to be ok. Her favorite position to sit in was criss cross, with her knees out, which caused her hips to be externally rotated. 

Once we got home from China I searched for a doctor in our area that treated Arthrogryposis. The doctor that reviewed her file was in Philadelphia and was well known for his treatment of this condition, but the thought of traveling so far so often didn’t seem possible to me. After much prayer, research, meeting with the only doctor I could find in Georgia, and talking to some amazing moms of kids with AMC, I decided Philadelphia was possible and needed. So we started our traveling to Philly in April 2013, three months after coming home. 

Olivia has had 3 rounds of castings on her feet, totaling 24 casts and two surgeries. Her hips have improved only because her feet have been straightened and are no longer as clubbed as they were. She had surgery this past February on her knees and now has legs that are just about perfectly straight and she walks. Now she can’t walk without her braces on, she has little to no muscle in her legs, but she walks. We will try to build that muscle, and hopefully she will eventually be able to walk with a smaller brace. 


AMC1


Her feet will be an issue until she stops growing, they are very stubborn. I have to remind myself that 3 years in one position is not going to be fixed overnight, or even over a couple of years. It is a long process and her feet are very stubborn. Every time she goes through a growth spurt, her feet regress. We have to keep braces on them 23 hours a day to keep them from regressing faster. But it is all worth it, because she walks!

Olivia has been such a blessing to our family. She has a spirit about her that everyone who meets her loves. She has brought more to our family than we could have ever imagined. She has endured more in her 5 years than most of us will our entire life, but she doesn’t complain, she keeps on with a smile on her face, enjoying life. We couldn’t enjoy her more. 

I have met many kids with AMC in all our travels to Philly and they all have one thing in common, perseverance. They all learn to overcome their disability, not let it define them. Some kids with AMC can’t move their shoulders or hands because they are fixed in one position, but it doesn’t stop them from being kids and enjoying life. Just like Olivia, she tells me all the time that she wants to play soccer, there is no doubt in my mind that she will one day kick a ball and run down a soccer field!

— guest post by Katie

…..

At NHBO, we love Family Stories. And we know our readers love them, too. Beyond being encouraging and informative, Family Stories shared here have actually resulted in children coming home to a forever family. If you’ve adopted a child through China’s special needs program, we hope you’ll consider sharing your family story. It just may be the reason another family considers that very special need.



2 responses to “Perseverance Personified”

  1. mandy smith says:

    I love your story and was wondering if you have a blog? It would be awesome to see your families journey.

  2. Angie says:

    Love reading your story! I have been so drawn to AMC kids and we are praying we can adopt a specific boy with AMC. I just love how I hear these kiddos are so resilient…they persevere, as you said. Amazing!

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2019 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.