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.

Tuesday, January 31, 2012

A blessing

This post is to explain my intentions with this blog, created a year after Nalah passed. I regret not documenting every day of Nalah's life. While she was here, I wanted to spend each waking moment (which were many) with her and her big Sister. I regret now that I did not document our life more fully at the time. However, those years, months, days, weeks are all so precious to me. My intention now, is simply to show those of you who are interested in learning about Trisomy 18 the joy, love and blessings these children can bring. Further, I want to show that a life lived with Trisomy 18 is not 'incompatible with life' as the medical community constantly states, but rather there is a quality of life that transcends our expectations. Nalah was a peaceful, loving, joyful girl. Nalah faced her challenges with such patience and tenacity. Nalah often surprised us in a good way, and when things got hard she was the strongest of the bunch. Our decision when Nalah was diagnosed was to give her a fighting chance at life. A fair chance. That included medical intervention, which is something Trisomy 18 kids often have to fight hard for. Nalah had her complex heart corrected at six weeks of age. She enjoyed good cardiac function after surgery. We were blessed with two years, two months, and twenty two days before her fateful passing. This time together is an immense blessing and I have absolutely no regrets for any sacrifices we made or challenges we faced. Knowing Nalah made all the difference. As a dear friend has said, "Our lives are better because of our child with Trisomy". I wish society could see the beauty and worth of our children. My hope is that by seeing glimpses into Nalah's life that other's might find some hope and open their minds to children who are complex and /or different.

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