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| Taleah and I , around 2003 |
In my mind I was thinking about what I wanted to say, thinking about her future, but as soon as I began, these dark scary feelings started swirling around in my head and heart. I knew my baby girl was going to have a very hard life. I had no idea why this would be or what it meant, but it felt like there were invisible demons flying around her and I wanted to protect her from them. (Not literally demons, but you know, some unseen general scariness). I went through the words and I remember saying she would have many challenges but she would have the strength to overcome them all. By the time I was finished I wanted to squeeze my very young baby tightly. What's going to happen to her?
A few weeks later we noticed she still wasn't lifting her head up and took her to the doctor. They did some tests, and then some more tests, and she was eventually diagnosed with Type I Spinal Muscular Atrophy, which is one of the scariest genetic conditions out there. It's the #1 genetic killer of children under 2, and we were lucky to have her live until two days before her 4th birthday.
So before I had any idea anything might be wrong with our girl, when I went to say that formalized prayer and blessing, it was like the Holy Spirit said, "Look, I'm really sorry about this, but you are about to face one of your biggest trials of your life." And we did. And I felt like Heavenly Father held our hands through it. I love her and miss her, and someday, maybe the research they did on her and our family's genes can lead to a cure. But that's one reason I believe in God.
