I have kept a private journal for years and have found that the act of writing is clarifying and healing. I brought my journal with me to the hospital knowing I would want to at least attempt to capture the wonder and gratitude that inevitably comes with the birth of a baby. When we unexpectedly found ourselves in the NICU the day after Eliza was born, my journal became an outlet for expressing the new wave of emotions that overwhelmed me…the grief and fear that came with this sudden turn away from everything we planned and knew.
The grief was real and heavy and unlike anything I had walked through before, but so was the gratitude. The five weeks we spent living in the hospital were the most intense in my life, and I felt called then and since to share that journey…to use it as an opportunity to widen the net of our community and to hopefully encourage others.
It’s scary to do this…mostly because sharing my experience and my feelings makes me vulnerable to criticism and judgment. But God has already taught me too many lessons in love, trust, and gratitude through Eliza that letting them sit in a drawer with the rest of my journaled ramblings seems selfish. She whispers wisdoms, and I have no doubt that all of my children will teach me more than I will ever be able to teach them. Beyond that, this experience has opened my eyes to the power of a praying village…a village I hope will only grow throughout Eliza’s life. And finally, I feel compelled to contribute to the limited (and mostly negative) sources online for PWS. As a mother who scoured the Internet the weekend after my own daughter’s diagnosis, I know all too well the terrifying testimonies and devastating statistics of PWS often offered online, and I wanted to counter some of that with what I have witnessed in my own child with the syndrome because when I take away all the facts and figures and look only at Eliza, I am amazed! She is engaging and gentle and full of enough love to make your heart burst open…and I can’t wait to see what the future holds for her. I am dwelling in possibility and refusing to believe that anything is not possible for her. Anything. And some may say that’s ignorant, but it’s what I believe in my heart of hearts…so I’m sharing my story hoping that it speaks to your heart too.