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!