Sweet Sydney (photo courtesy of Now I Lay Me Down to Sleep)
Little Sydney is a patient with Scimitar Syndrome at Children’s Hospital in Minnesota. Her parents have been told she will not survive. Mom Sylvie has been sharing beautiful letters of love and faith during these challenging days:
What an invaluable lesson this little girl is teaching me, teaching us all, about living life in the moment and taking in each day as a gift. She is looking and feeling terrific. I focus now completely on my baby and not on the numbers, labs, monitors, etc. I don’t chart her progress anymore, read the doctors notes or worry about blood gasses. It’s very freeing.
I focus on how often she locks her eyes with mine, on how she reaches for my arm at night, and her many attempts to smile. Everything I do is deliberate and loving. From giving a bath, to telling a story to dressing her. It’s all done with all the love I have to give her. I can’t kiss her enough. When my heart starts to ache with the realization this won’t last forever, I have to muster all the strength in my soul to let the sadness pass me by instead of letting it consume me. Sometimes it’s exhausting, but I can do it.
Sydney is a prisoner in her body. I have come to realize and accept that. I feel like I have a good amount of time with her left. And when the time is up, she will be free to run and play and grow, and the moment she misses me, I will be there.
Until then, I live in the joy that is this day.
Visit Sylvie’s journal at http://www.caringbridge.org/visit/sydneycook. Password is squeaker.
The Now I Lay Me Down to Sleep Foundation provides photographic remembrances to families of children with terminal illnesses. Visit their website at http://www.nowilaymedowntosleep.org/home/.
