A tribute to our brave and precious little girl Nalah, who lived valiantly with Full Trisomy 18. Nalah is an inspiration, a blessing, and our greatest love.
A POEM FOR NALAH
A butterfly lights beside us like a sunbeam.
For a brief moment it's glory and beauty belong to our world.
But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.
Thursday, February 2, 2012
Nalah talking to her Momma....
This video is special to me, as the morning we recorded I had just lost 2000 or more videos/photographs when my iPhone got wet. I had begged my husband to upload them, as I was not 'technologically literate' at the time (still learning). He did not get it done. I was so sad to lose these images. I had a little playtime with Nalah and she was particularly vocal with me that morning. This is not really shown in the video, but what I see is her determination to let me record. Somehow, she sensed how important it was for me I think. She drew me in to her world, and away from my sadness and disappointment. We lost our records of the three months where she was learning at such a rapid pace (for her) and while she was the healthiest ever (in respiratory terms). The photos and videos I began collecting after that loss will always be special to me. I cannot emphasize enough the importance of documenting our children's lives. Each moment we have recorded is absolutely priceless. I love to hear her voice now. We used to play a little game. I would hide my iPhone and set it on record. Nalah always knew, somehow, when it was turned out. She would stop chattering right away. It was a difficult challenge to record her communication, but there were rare times that she cooperated and let us record without going to great lengths. Nalah was always aware of her surroundings. Always engaged. She was far from the girl the medical community led us to believe she would be. We were told she would not interact in a meaningful way. Rather, she communicated constantly and we adored speaking to her in any way we could. There are many ways to speak that are non verbal. Love you Nalah.