It has really been a bumpy ride lately. I don't even know where to start on this one.
I guess I should start with a fellow special needs mom. She blogs, like may of us do to keep sane and make sense of the world around her. She is awesome. I love what she writes and it gives me hope. Recently she wrote something that made people very upset. It wasn't a big thing, just a little thing in passing. But it got very blown out of proportion and as a result she had to shut down her blog. I wrote to her expressing my support. I told her that I even once wrote and questioned some choices my old church was making. It did have some fallout, but I firmly stand by what I wrote. People don't always like to have mirrors held up to their faces. The truth can sting. I hope that she finds the strength to blog again and not let others force their ugly thoughts on her or her family.
Then we celebrated Cary's first Christmas. I was so excited! The flu has been working its magic in VA and some of my family was recovering from it. Cary's BPD doctor was very nervous about flu season as the shot has not protected like they thought it would. I was given strict instructions on keeping her away from places, things, and people. To make a long story short even though my family was well on the mend Cary was not allowed to be around them for Christmas. Cary and I stayed home while Shannon and Marvin went and had a nice family dinner and presents. I think I cried most of the day. I felt so mad and cheated. Cary, on the other hand, could have cared less and played with her new bumpy ball and dancing piggy all day. It was good that at least one of us felt festive. I did finally pull it together. Thanks to some caring friends calling in and a big slice of apple pie and reflection on what the day is really about I ended up enjoying time with my daughter. Plus my rocking mother in law sent home a ton of goodies!
Yesterday we went to MCV for an EEG. I had scheduled that and a neurology appointment all in one day. After dropping off Marvin and Paw paws house and picking up my friend Heidi, we were off. Cary was treated to a facial scrub and then had so many wires hooked up to her she could have been the bride of Frankenstein. Cary slept through the whole thing. Thank heavens. We were in there for about five minutes when the nurse excused herself. Heidi told me that that usually is not a good thing. She came back and was happy to hear that we saw the doctor the same day. So then I started to worry. Heidi told me that it probably was a little thing. So I relaxed some and we had lunch and went to the doctor.
It turns out it wasn't so little. Dr. A told us that they expected Cary to have abnormal brain scans. She had massive brain bleeds at birth and hydrocephalus. What they didn't expect was so much abnormalities. Cary is having many preseizural brain waves. Lots of them. So many that we have to go back in a few weeks for a 24 hour EEG. Then she will go on medicine. I knew that she may have to do this, but she is so young and little. I was hoping to wait until she was 3 or 7 or 12. I felt like I had been hit by a ton of bricks. Again. We also discussed her ability to walk and talk due to all of her brain damage. Dr. A was hopeful that she would be able to do some things but also realistic on the situation at hand. Again, feeling like I was being hit by bricks. It was hard. I like Dr. A. She is awesome. But my daughter is my world. And it is hard to hear about limitations and brain malfunctions. She will also soon bear a new label. When she is 2 she will be classified as having Cerebral Palsy. So after dropping Heidi off I cried all the way home. Cary probably thinks mommy is some sort of basket case at this point, because she was conveniently ignoring me.
So I cried, mourned, and raged against it all. Then I did some digging. CP is not a death sentence. It is brain damage, which Cary has. It also is more common in boys. Everything I have put my hands on so far and read boils down to the same thing. It doesn't get worse. It simply is. Also, the more a person can do for themselves, the better life they had. Aggressive therapies and early interventions are the key. So me sitting around and crying is not going to do a fat lot of good. Yes, it releases emotions, but it does not help my child. So what happens next? We step up her therapy. It is important for me to get vision to show up and be on board on this. Shannon is also pitching in more and not treating her like she is glass. I have also been working on getting a Montessori curriculum together for Cary. By immersing her in a language rich environment with a heavy focus on Sensorial as well as simple Practical Life skills I am on my way to giving my daughter the education she is entitled to. After all, I am a teacher. The stakes are so much higher this time around though. Every gain Cary can make is a step forward to a better life for her.
So I will continue to fight, speak out, and bring out the best in my daughter. She is amazing, funny, and my little hero. Together we can conquer the world!