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.
5 thoughts on “Why Blog?”
I am so happy you’re sharing your family’s story and hope that there is comfort to you and all the other families traveling their own similar but very unique path.
Julie, it is so hard to look at those beautiful eyes of Eliza’s and believe that she is or will be anything other than perfect. I suppose it is possible that her perfection may be outside of what may be considered normal but she is non the less perfect, as is her sister. I believe the journey of your lives with Eliza will be joyous and she a gift to you and all who know her. It may seem that I am stepping over a line a bit but I do believe it is all for a reason….though we may not always know the reason or the why. I do know that living with the love you, your family and all your friends have for each other will make it easier. You have created a beautiful circle of love that has been so apparent to me for so many years, I just want to say I love you all and am so fortunate to know you. I look forward to following your blog and also the growth of your sweet, dear family. Barb
so glad you’re sharing your heart – your girls are beautiful and lucky to have a mama like you 🙂
Good evening Julie. I am a NICU RN and I’ve just read Eliza’s article in the Advances in Neonatal Care journal. Reading this came close to my heart as my younger brother also has Prader-Willi syndrome that was unfortunately undiagnosed until he was 7 years old. His experience is what led me to being a NICU nurse. I continue to learn from him everyday and I am so grateful he is in my life.
I’m so glad you commented and shared your own connection to the PWS community. I love to hear how inspired and encouraged others are by their friends and family who live with PWS, so thank you for sharing that. I have no doubt your brother is incredible. And thank you for all you do as a NICU nurse…you guys are truly amazing!!!