Long story but you might want a tissue. :)
June 2nd, 2009, I gave birth to my 4th child. A little girl named catalina. We knew immediately something was wrong but after a short NICU stay, we came home without answers. It took a month before we received devastating news. Our child was going to die. She had a rare brain disorder called miller dieker syndrome. The doctors told us we might have a month with her. So we made the best of the time we were given. Well, a month came and went. Christmas came and went. Then it was the new year. Then unbelievably, we were celebrating her first birthday! She was still an infant in every way. She had no control or purposeful movement of her body. She had no words. She required constant oxygen and suctioning of oral secretions. She was on heart monitors. Her heart had stopped beating a dozen times and she had seizures almost constantly. We had signed a DNR because we felt it was wrong to force her to keep living. She had developed lung disease from constant pneumonia infections.
At this time, the doctors were happy to see she hit her first birthday but they told us the odds of her living to the age of 2 was less than 1%. I had joined a support group and I knew the doctors were right. I was watching everyone's babies die and kept wondering when it was my daughters turn. But it never came. She turned 2. Lots of sicknesses. Hospitalizations. Lots of scares. No development physically, mentally, emotionally, but she was 2. I had come to terms a long time ago with the fact that she would always be fed through a tube. She would never hold up her head. She would never hold my hand. I was just happy to see her smile and watch her breathe. The doctors then prepared us by telling us that a child with her disorder living to the age of 5 has only been documented a couple of times. As her body grows, her brain will become overwhelmed and succumb to seizures and eventually death.
Every day, I prayed. I didn't pray for big things. Just to give us tomorrow. But someone informed me a few months ago that God doesn't Want me to pray for the possible. He wants me to pray for the impossible. So I did. Your religious beliefs aren't the point though. The point is my daughter is doing the impossible!
She turned 5 June 2nd! But that's the tip of the iceberg. My floppy noodle daughter learned to stand up! She is supporting her own head. She is holding my hand and her toys! She is rolling over and making yes and no choices using her eyes! She is throwing tantrums too!
So to recap, 6 months ago, our goal as well as our doctors goals, were simply to help her breathe and keep her comfortable. Now, she is receiving equipment because physical therapy believes it's within the realm of possibility for her to learn communication through technology and to be standing unassisted in a years time! As parents of healthy kids, we take for granted the seemingly small things but these things are huge for us. If I woke up tomorrow to discover one of my other kids could fly, I wouldn't be more surprised than I am right now. Blown away. Just wanted to share. As far as seizures go, we see one every now and then. Doctors can't explain why she isn't having tons of seizures. Her EEG shows brainwaves that correlate with constant seizure. Yet, she's not having them.
ETA I didn't expect this post to get so many responses. Thank you for all your kind words and prayers. If anyone is interested in following my daughter, she has a Facebook page called "I love catalina Ruddock". I try to update regularly. Her disorder is rare so the more awareness we can raise, the better chance that in her lifetime, a treatment will be found.