When writing this blog I kept going in different directions. So much I wanted to say but how to tie it all together? So, I decided on the things that are most important to me, and so it goes...
On July 19, 2019, my cheery, beautiful baby girl was diagnosed with a rare and aggressive brain tumor at the age of 11 months. I remember as soon as I realized what she was about to endure, what her life would be like, what would be expected of her, I said to myself, “how can I make the rest of her life special?” How quickly did she show me she was making mine special. I am the proud, lucky, humbled mother of Rosie. She is special, she is love, and she is light. She loves no matter. Days after days of illness, poke and poke, stick after stick, med after med, and worst of all being held down against your will by the person you trust the most. To then seek me and my embrace for comfort. She knows nothing but love.
There really aren’t any words to describe how bad pediatric cancer is and what you as a parent have to see, do and be prepared for. The words alone are crippling and the scenes that follow are life changing. You truly live in a state of constant worry. Then add having other children, jobs, family, and friends, into the mix. How do you keep it together and keep going, keep moving, and stay happy? It is a task. It is a job in itself. I’d be lying if I said that it hasn’t probably ruined a part of me forever. But, also, in my case, I have been blessed to have the greatest extended family and the most amazing friends that have carried Rosie and me. Carried my family and my parents as well. This wonderful community in Delaware County has also rallied around us to show us constant support and compassion. For that I will always find a reason to be happy and put a smile on my face.
My darkest days as Rosie’s mom came this spring with her secondary cancer diagnosis. I saw her bleeding, crying constantly, enduring a lot of pain and overall looking like it was the end. I think I blacked most of it out, trying to stay afloat for my other two girls and hopeful we could get through it. And once again Rosie showed us how special she is.
I’ll say it again, Rosie is special. She is loved by people near and far. People I don’t even know or have ever met have sent her things, prayed for her and my family. Rosie walks into a room and has a circle around her within minutes no matter if she is at home, at school, at a party or at her favorite place, the oncology clinic at CHOP. She is loved. Loved beyond measure. She has a way of making everyone feel like she loves them the most and that they are so important to her. Whether she is singing hush baby with my mom, or playing silly games and laying on my dad, playing too many monkeys with her dad, singing with her sisters, rubbing my hands and arms as she falls asleep, running to her favorite people at CHOP, she makes you feel special.
I once read a quote from a fellow mom of a child with cancer and it sums up this life so well....” Being your mom has led to my greatest heartaches but also my greatest joys.” Thank you Rosie for teaching me what love is, what it should feel like and most of all how to love without expectation. Thank you for showing me that you can get up and keep going and that you can always find something to smile about. Thank you for helping others see what is important and how to be kind and show compassion. Thank you for your raspy voice and laugh that makes us all giggle. Thank you for your whacky gait that we chase down the hallway. Thank you for the pretty nails I get to paint. Thank you for the cutest little nose I get to bop. Thank you for covering me in stickers all day that make me smile when I find them later. Thank you for giving the best hugs. Thank you for that crooked smile that lights up a room. Thank you for being strong. Thank you for letting ME be your Mommy.
I have had a feeling for 4 years that Rosie was truly meant to be here to change something. To be special. Maybe change the statistic rate of her cancer and prove them wrong, maybe to change people’s day that she sees along her way, maybe to help use her story to raise funds for brain cancer, maybe to beat two cancers, maybe to just change her family’s lives, change the way her sisters see life and compassion. Whatever it may be, she is has changed me for good. I am now able to get up and speak in front of lots of people and tell her story, tell our story because we do it hand in hand. We live it together. I plead for help to raise money for CHOP and other organizations that directly fund families and research to cancer. If you are reading this, I thank you for listening to our story and I hope hearing it will maybe give you a push to help Rosie’s changes carry on. This is her special. Community, hope, resilience and unconditional love. Rosie, I will forever dote on you, hold your hands, kiss your cheeks and be your strength when you need it. I will hold your hand while you lead me through your special life.
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