So....

I deeply love a child that happens to be a medical mystery. She is fifteen years old. A precious and priceless, beautiful gift. All my children are. From the moment my mysterious one was born, there was something so strikingly different and delicate about her. She was delicate in ways that made strangers cry. We knew that she was beautiful and ours. We had no idea what God had wrapped up extra-special just for us. We still don't know lots of things.

I am blogging this story, our story for so many reasons. There are many days that it feels like I am walking the edge of an emotional razor blade. Writing makes me feel better sometimes. Maybe there's someone else dealing with a medical mystery and you need to know that you aren't the only one. Maybe you have nothing but healthy, "normal" children at your house and forget how blessed you are. For whatever reason you are here, thanks.

Here's how the story goes. My youngest daughter has been a medical mystery for most of her life. She has some diagnoses that are only symptoms really. Symptoms of what, we may never know. New stuff has been popping up more and more lately, which has brought us back to the point of searching again. Now for the list:

Hypotonia (low muscle tone) - she was born "floppy", there is nothing actually wrong with her muscles. This is a symptom of an undiagnosed neurological problem. She is also intellectually challenged. Another neurological mystery.

Spina Bifida Occulta - the mildest form of Spina Bifida, has no significant bearing on her other than reduced bladder and bowel sensation

Connective tissue disorder - possibly Ehlers Danlos syndrome, she has extreme joint hypermoblity, along with joint pain. Not fun when the muscles supporting those loose joints are weak.

Dental issues - enamel and dentin deficiencies, along with reduced salivary flow

Scoliosis - big fun here, she sleeps in a Providence sleeping brace, a device of torture

Mysterious hand symptoms - started with her left then her right. Trembling, weakness and pain. The neurologists ran every test they could, and referred her to a pediatric rheumatologist to see if he can figure this one out. She sees him in 2 weeks.

That's one list. Here's the other list, the good one:

She is brave - faces tests, needles and all, without fear. She hates every minute but she endures with such courage. She had her first root canal when she was 4. God gave her an extra measure of His grace to carry her through. She doesn't fall apart, so I can't either.

No one works harder than her. She wants to do everything for herself. It might take her twice as long and it might not be perfect, but she is going to try.

She is artistic, creative and willing to learn. She loves sushi and High School Musical. She want to drive a Volkswagon Beetle with a Hello Kitty steering wheel when she grows up. She always wears frosty eyeshadow and too much jewelry. She can ride a bike and swim like a fish. She loves her cat and calls our 80 lb. boxer her baby and lets him sit on her lap.

We are blessed.