In recent weeks, Luke and I have been having more and more conversations about Olivia’s fate. What will her life look like? How long will she be with us? Will she come home?
The possibility that she may pass away before ever leaving the NICU – no matter how unbearably sad that is for us to imagine – is real. And no matter how many times I’ve been encouraged not to get ahead of myself… not to think about outcomes yet… to stay in the here and now… I can’t. I don’t.
Ultimately, I go there. Usually multiple times a day.
I think about things like how she may never feel the fresh air, or feel the sun. I think about how she might never enter our home, never spend a night at home with Mom and Dad. She may never wear a Halloween costume, or see Santa. I think about all the friends and family members she may never meet. The places she won’t be able to visit with us.
Some things I think about are silly, like Halloween costumes and Santa. Some are sad, like meeting family members, and visiting places that are special to us.
Others are just downright innocent: the warmth of the sun, the feeling of sand beneath your toes at the beach, the way the air starts to smell differently in the fall.
And while not every innocent thing can be bottled up and brought to Olivia, some certainly can. So I’ve decided to do just that. Even if it means sneaking things in and breaking NICU rules. Dr. V – if you’re reading this, no fair telling on us!
16 Comments
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The most precious of precious things 🌸 Break all the rules, mom and dad!
Oh man, so sweet, so sad😢 Love you all! Nana
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Love Grampa P
Break any rule you want! 🌺💖
That raising eyebrow is my ultimate favorite – this video with her first flower(pink, of course) is full of them – can’t get enough of sweet Olivia 🌺💖
Sweet Baby Olivia! Break all rules mommy and daddy. Xo
Whitney and Luke, you are both incredibly strong. We are praying for you and Olivia. Your story today was heartwarming. Love you.
Break the rules and enjoy every precious breath and moment with sweet Olivia! The love and affection you both reflect can be seen in her interactions!
How precious is she holding that flower! She must have loved the soft petals on her skin while looking at her mommy. 🌸
Bring her the world, Mom and Dad❤️ Love watching Olivia”s eyes watching everything. A tearful watch…you are all so strong and good😘 God bless. Love to all❤️❤️❤️❤️❤️
I love this so very much.
Break the rules. It’s worth it. 💗🌸
Break the rules. It’s worth it. 💗🌸💗
You continue to inspire me with your strength and grace. You are an amazing mother and Olivia is blessed to have you as hers. Keep loving the small beautiful moments you all are able to share, and I know that someday you will reflect on this time as what was necessary to get you where you were meant to be… A happy, healthy, loving family … You, Luke and little miss Olivia are in my thoughts and prayers. Xoxo love you all!
Love the pictures of Olivia with the flower. Keep on making new rules! I recall evenings when Tim and I were engaged in many similar conversations and the countless hours spent researching the internet for a glimmer of hope or community that had been down a similar path. Sounds like you have amazing support from your family, doctors, nurses and community. I, too, am here for you. Please let me know how I can help. Sending love and a big kiss to Olivia. XO
So sweet. You two are amazing & strong & Olivia is so lucky. I love how she raises her eyebrow. Thinking of you always. Xo