It has been a long, hard road. I never, ever expected this life. When the doctors told me that first night at the hospital, after she'd started having seizures at a few weeks old, that she would be "mentally retarded" I thought "Oh, I can handle that." I was seeing what you always think of when you hear those words, high functioning, living happy lives, maybe even on her own one day. I could deal with that. It wasn't until the neurologist told me just what she had (Lissencephaly) and told me to "go home, put her in an institution, and have normal children to love" (btw, I immediately found a new neuro), that I have any small idea of what was ahead. Still, I never realized, not really because how can you? Not until you are in the thick of it. At first it was hard to see the difference, aside from the seizures she was just like any other baby. But soon enough the differences became obvious. No sitting up, no talking, no . . . lots of things. I put away so many dreams, it hurt so much. But there were so many little joys, too. When my husband chose a different life and walked away, saying she should be "put away", our lives changed a lot. He lives a very nice life and we live below the poverty line. Is it worth it? Some days I waver but the truth is YES! My Bee is worth every back pain, every lost dream, every hungry day, every mile I have to walk, every sleepless night. She is a gift, as is my son. We are both so much the better for having her in our lives. With Christmas having just come and gone and us spending hundreds of dollars in the last few weeks on medications, OTC's, she just got one present and it was really meant to help clear her lungs - a massage mat. I'm hoping it helps. And that her diaper doesn't leak on it. But one thing at a time!
A lot of people helped us to get to this point. Her longtime pediatrician, her newest doctor, old friends, new friends, her brother and, of course, God. And we must give Bee some credit, she's strong and amazing. I've a link on the sidebar for her website if you want to check out her paintings and things.
So before I go to bed for a couple of hours of sleep before the next breathing treatment, I wanted to just say thank you to everyone, and to God. My girl (and she LOVES that song - she also loves Taylor Swift and Della Reese) is 21!!!!
Psalm 145
1-3: I will exalt you, my God the King; I will praise your name for ever and ever. Every day I will praise you and extol your name for ever and ever. Great is the Lord and most worty of praise; his greatness no one can fathom.
8-9: The Lord is gracious and compassionate, slow to anger and rich in love. The Lord is good to all; he has compassion on all he has made.
