So here is what happened. Rocío was born at 32 weeks of gestation due to an infection that was found later. She cried inmediatly and sounded like a baby goat. She stayed in the NICU for a long month. In the meantime, she was diagnosed with Periventricular Leukomalacia (PVL) and our world crashed. We didn’t understand at all what this meant, but just to hear ‘handicaped’ was terrible for us. Doctors told us many stupid things, like we would never be able to communicate with her… Luckly for us, our daughter pretty soon proved them wrong. My biggest pain then was believing she would never be happy, and again we were wrong.
First years were mostly about trying to understand how doctors and society opinions were so different from what we saw in Rocío. She has been diagnosed in so many different ways, and perhaps the first time a doctor wrote ‘spastic quadraplygia’ it made my sad. But the most important thing I’ve learned being a special mom is that nothing of this matters. Those labels don´t mean anything for us, they don´t change who my daughter is at all. Don´t even get me started on society labels… The good thing is that I think we can change those and we definitely should.
Anyway… Over the years we took over control of the situation, as much as we could. No parent should be told how to feed, dress, talk to, move, hold, etc… their own child. We were done working with so many different specialist, with so many different opinions about things that should have only one version. Conventional therapy didn´t make sense anymore and definitely wasn´t working as we expected. I read on a blog (Terrible Palsy) about ABR and our life changed completly. We started as soon as we could and we are so, SO glad we found it. Now I feel our lives are more normal and we are far, far away from were we started.
And just when we felt free from doctors and hospitals… She seized. First time ever and it was a status epilepticus, the worst thing possible. We are still dealing with this, we are giving it a chance to medical treatment first. So we are trying to figure out what drugs and what dosage she needs and hoping in the meantime she won´t seize again. If it doesn’t work, now I know we have options.
And that is it. That’s the base of the soup and a little sour drink to go with it.