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.
Saturday, February 4, 2012
Carrying on with Nalah in my Heart
Just admiring my little girl. She is on my mind constantly. I 'carry on' with her firmly in my heart. I do not like that talk of 'moving on'. I think anyone who speaks of 'moving on' does not understand grief or the reality of losing a child. I much prefer the idea of 'carrying on' with the child a central part of my life, whether they are physically present or not. Nalah is part of the spirit world now. Heaven, or whatever you may call it depending on your beliefs. Nalah still is....I do not talk of her in the past tense. I refuse to. To me, Nalah is as precious as a spirit as she was as a child. I know her earthly life is past, but I will not speak of her as someone who no longer exists. She exists in a realm where I cannot see her, cannot raise her, cannot watch her grow up. But she exists, somewhere. I believe it is Heaven, given her innocent lovely soul. I consider myself a Mommy to a child on earth and a child in Heaven. We cross both realms. We are a family of four, embodied in three. Nalah is still integral to our family and I will not have it any other way. We treasure her. Perhaps I am sensitive on this topic as there are so many others who devalue the life of a developmentally delayed child. Especially those with a trisomy diagnosis. I promised my girl before she was born that I would never complain about any of the challenges we would face together because of her condition, Trisomy 18. I have kept that promise, I think. I would not complain about Nalah, nor would I ever complain about her sister. Children are a precious gift. It took me a long while to learn this. I became a parent later in life, and Nalah forced me to confront the degree of sacrifice I was willing to make. I can honestly say, that any sacrifice we have made pales in comparison to the joy of being my girl's Mom. I am proud to be Nalah's Mom, and I feel fortunate to have this opportunity to parent my girls, even though I miss the one in Heaven every second of every minute of every day. The blessings outweigh the hardships. Learning to love unconditionally and to let go of what does not matter is quite liberating. Thank you Nalah for teaching me what is important, and what is not. You continue to inspire me my girl.