Saturday, February 16, 2013

Meet Nature Girl!

     At almost 8 months old, Nature Girl became our first adoption. She had already lived through more trauma in her little life than most of us in a lifetime and came to us in pretty bad shape. This little girl was exactly the vision God had planted in our hearts about defending the orphan and fatherless, and was a direct answer to prayer. We knew her start had been rocky, and she was definitely malnourished and delayed, but we had faith that with proper care and nutrition she would soon be right on track. We had agreed as a couple to adopt at risk children, but without special needs, and to take them as young as possible. Low and behold....God had other plans.
     A couple of years and another adoption later (her sister who is only a year younger), we realized we had an issue with this little girl on our hands. She just was not progressing normally like her sibling but most of the time still fell in the 'normal' range according to the developmental experts. Our gut instinct was that something wasn't right but when you still fall within 'normal' it wasn't a concern to the so called experts. Blood tests came back normal, she was not the most coordinated child on the planet, but neither are alot of children. She suffered from horrible asthmatic attacks which kept us up pulling all nighters for weeks at a time. She was even hospitalized for a lung biopsy at one point. She never complained and was always the model patient. We kept going. We saw lots of doctors and had multitudes of tests. She slept alot. I KNEW something was wrong. Again....no one seemed concerned and would you believe those tests all came back normal?!!!
     Years past, school started, and the delays got worse. She was slipping farther and farther behind and into her own little fantasy world. At 8 years old she still couldn't read, and day to day couldn't remember anything she had learned the day before. She was so very weak and getting weaker by the day.  She couldn't even ride a bike because she had no muscle strength.  Even her youngest sister 4 years her junior, began to pass her developmentally. We began to get very concerned and realized we had significant special needs on our hands but at the same time no one could give us any definitive answers. We were told by one very- smart -but- clearly- dumb 'expert' that Nature Girl would be learning 'impaired' and have limited ability to function the rest of her life. We had another friend who we shared our concerns with who blew us off with the statement 'What's the big deal? Why are you worried? Nature Girl doesn't know she's delayed or behind! Just leave her be. Let her live in her own little world." (Uh....bye bye friend! Who says stuff like that? We are the adults for a reason....to help the weak...not just let them be. Sheesh!)  Finally, tired and exasperated and tired of getting no where, we fired all the specialists (14 of them total) who had cared for our girl and started over......and began to get answers. Finally! It had been 8 years.
     My husband ordered the newest and most thorough blood tests. We had MRI's, EEG's, nighttime AND daytime sleep studies. This time we had different doctors who along with the hubs got different answers. We began to peel back the layers that had haunted us and kept this child in a prison all these years. What was wrong with our child? Nature Girl we discovered had multiple issues. One being Narcolepsy (google it) which explained the weird sleep patterns and the inability to learn. She ended up having a rare autoimmune cell disorder which explained the overall weakness and lack of coordination. Her cell disorder affected her entire body including her brain's ability to accept and process information. With therapies and meds it could be not cured, but helped....but to what degree we still did not know. We learned she would be on medications the rest of her life. As we watched this child suffer with even the most basic of activities you and I take for granted, it lit a fire inside of us. We would not take no for an answer and would keep pressing on until this child had reached her full potential. We had never felt equipped nor had the faith for a child with special needs but now it was our life 24/7.  We lived determined to not let anyone or anything stop us from getting her the help she so desperately needed.  We charged on full speed ahead!
     Today Nature Girl is 11. Three years have passed since those diagnoses and what a three years it has been! Nature Girl takes 40+ pills per day to keep her cells healthy and operating with the highest strength amino acids possible. Her Narcolepsy is sometimes an issue, but we are able to treat it with meds so she can stay awake during the day. We've had tutors and national learning 'programs'. We've had hours and hours of therapies including physical, occupational and coaching every week to get her caught up all the while not knowing whether or not catching up would even be possible. This Mama (oh and the wonderful Daddy Doc) has dedicated her life to making sure this child has every possible tool she needs to be successful and reach her potential. Who needs TV? We are watching the most incredible mini series ever written and it lives in our house! This year was the first year she's been strong enough mentally and physically to go to school with her sisters and her peers....but she's AT SCHOOL! She's learning! Not only is she in a regular classroom at school (take that all you bully specialists who were W.R.O.N.G!!)  but has made straight A's the entire year so far. Next year she will be skipping a grade (are y'all getting the gist of this??) because people.....she's that smart. Hiding behind layers of delays, multiple autoimmune disorders, asthma, ADHD...and the accompaning-issues that go with these disorders, was a bright, smart, completely normal brain waiting to grow and learn. We found it!! (insert a little dance here!!)
     Nature Girl is named just that because she is a living breathing encyclopedia about animals and all things nature related. She recently began equestrian lessons and horse care. This kid seriously needs to be a Vet or animal trainer when she grows up.....and what's even more exciting is that she has the ability! So many wanted to write her off. So many said she couldn't. We were told at one point to put her in a special needs school....because she couldn't handle 'regular' school academics. She would have been trapped in labels and never progressed beyond what that school would've tagged her to be. We are so grateful that we listened to our hearts and God speaking through the dark, twisting mazes to the end of this medical mystery. The girl with the rocky beginning is now turning into a butterfly! Fly girl, FLY! Stay tuned for more from this remarkable kid and more chapters to her story! She is no where near done!!

3 comments:

  1. And you should see her at PE. Once she starts a skill, you can't hold her back!!!!! Once you convince her she is good at it just like the other kids she actually loves it. I love her.

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  2. What a wonderful testimony to love and to God who put that love and precious girl in your lives. What a blessing you all are. I love your determination and your fight. I, too, heard things about Jonathan I did not accept as truth even though they came from specialist's mouths. I admire you, Cissy. Amazing woman of God.

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  3. Nothing is more beautiful than when God places the right child with the right Mommy! I find your Nature Girl to be a delightful encyclopedia of facts about animals.....she is such a sweet girl! I'm new to her life so I had no idea of the twisted road you have traveled with her.....knowing exponentially increases my affection for her & my admiration of her mom!

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