05/01/2024
Happy Birthday to my baby girl. I love you Beautiful (aka Beastie, Tormenta) with every fiber in my soul.
Today is the day we celebrate our little warrior Lucy MaryAna.
May 01 2019
6lb 14oz - 20 in long
14:30
5 years old. 1,825 days we have spent with our beautiful warrior, and for 1,825 days we have been blessed with more than we could ever imagine. This little girl has taught us so much. Consistently showing everyone anything is possible. I am so grateful she picked us as her family. That she chose me as her mommy. She is so lucky to have the big sisters and big brothers that she has, to always be her best friends and protectors.
Lucy is the most resilient child I know. Her intelligence amazes me every single day. We never thought she would be able to achieve what she has, yet she always excels and achieves the things we are told she won’t. It simply takes being told she can’t, so she will. Lucy’s strength, endurance, and unstoppable nature is what keeps me going some days. As her mother, I have learned to never take anything for granted, even through the daily struggles. Lucy has shown me the importance of never giving up, no matter what obstacles come your way.
Lucy has one of the biggest personalities of anyone I know and she is only 5! This little girl is filled with sass, sugar and spice. My little sour patch through and through. She is such a perfect combination of her 4 older siblings and I love it.
Going to school (3rd year of 3 years of PreK) starting Kindergarten in August has encouraged her speech to really develop in ways we didn’t expect. Now being almost 5 months post op from a hemispherectomy (brain surgery)
A year ago it took her an hour to calm down at school on her first day. Literally full blown meltdown refusing to let go of me or Caity. Now she goes without tears, blowing us kisses and all the waves goodbye. Lolo LOVES to tell us every day how she played at school with her friend(s) and this is huge because she refuses to interact socially with any friends until recently this year.
She is now attending: Speech, Feeding, OT, PT, and Emotional Support Therapy (on top of the ASL) out patient and in home care. She participates in gymnastics and swimming and it helps her so so much.
Lucy loves to sing (it helps her speech so much) and harmonize. This girl LOVES music. I mean loves it. She will dance and twirl. She is on top of the world. She is walking up stairs. She is doing so well in going above and beyond to try to communicate all of her needs with us, even when she gets frustrated doing so. Lucy’s best friend is her big brother Liam still and Trenty. Liam will always be her person and their relationship is so incredible but she is super bonded to all of her siblings.
Since her last birthday she her brain surgery and changed her daily routine. Her Neurologist team has increased and providers locally have grown. I was terrified and I am so utterly grateful because she is a godsend surviving.
Overall today is the day my life forever changed and in some ways I can say saved. Lucy is the most beautiful, affectionate, silly, sassy, loving baby girl I could ever ask for. She truly is a miracle. Here are just a few fun photos of our girl this year. Also a few photos of Lo from this morning.
Lo wasn’t feeling well this last few weeks so say prayers for our girl. The last big seizure she has took a toll on her developmentally and she digressed a little bit she always gets back to where she was. While she has met all of these accomplishments and achieved more than we could ever hope for her condition will never go away. The daily fear, worry, and vigilance with her disorder takes over and is always a priority. We are so grateful her disorder is minor compared to some but I can not minimize the complexity of what she faces with HME & CP. Fall of last year absolutely rocked us. And since then it has been a rollercoaster. The VNS mitigates and minimizes the severity of these things but it doesn’t take away the seizures (which we knew) and when she wasn’t being monitored closely or things weren’t being adjusted properly we were in a bad place with multiple severe seizures, hospital stays and overall sickness for Lo. The Hemispherectomy is supposed to mitigate her seizures as a whole, we will know better by 2 years post op,
We choose to stay optimistic and we choose to remember even the impossible is possible. She will always remind us of that.
https://www.paypal.me/lucythewarrior
^ if you would like to donate to the nonprofit in her name in honor of her birthday we would be forever grateful. So many fun things are right around the corner and I can not wait to find the first family we get to help. I’ll think we already know who it is.
