It was a blog for a little girl who was born 11 days before Kathryn and has Spinal Muscular Atrophy. Her name is Avery and she is not expected to live very long...the best case scenario being 18 months. Her parents created a "bucket list" for Avery and blog about her adventures to spread awareness about her condition. As I read her blog, I found myself crying, unable to fathom what her parents are going through and imagining what I would do if Kathryn had to suffer like Avery. I don't know much about SMA, but it sounds like a cruel disease, not only taking the life of the sufferer, but robbing them of all the amazing things babies do as they grow, like kick their legs and coo.
There was a video on the blog of another little girl, Estella, who had SMA, which was discovered at her routine 8-week check-up. Unfortunately, Estella passed away at 8 months old and the video chronicling her life, was so hard to watch. She started off like any other healthy baby and as she got sicker, she was surrounded by more and more tubing and machinery, and she lost her ability to "talk". I can't imagine never hearing Kathryn's voice again or seeing her little legs flailing about. Needless to say, I was very emotional while watching it and I found myself sobbing.
Shortly after watching it, Kathryn was done nursing and she looked up at me, almost like she knew I was sad. I picked her up and she just smiled at me. I think it was the first time I really understood how much I love my daughter. I held her like I've never held her before and she let me. It was like she knew I needed to. When I pulled her back, she just stared into my eyes, almost as if she were trying to communicate with me. Then she made a smacking sound with her lips and leaned towards my mouth. I think she was trying to kiss me. It'll always her first kiss to me in my heart.
Tonight I find myself so grateful for a healthy daughter...one I can go on adventures with and teach and learn from because there are people like Avery and Estella's parents who won't get that chance. Although I never met either girl, I'm thankful for what they gave me tonight and I won't forget either of them for that.
If you'd like to learn their stories, go to http://averycan.blogspot.com.
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| I love this girl. |
Keep this perspective easily accessible and go back to it when she makes you question yourself...and she will. She will never understand your love for her until she has her own child.
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