Luca Birthday Letter: By: Shannon Gilmore (Luca's GodMama)

Luca,

How can it already be a year since your birth, a year since I held you in my arms, a year since you shared your baby coo’s with me, and a year since I kissed your sweet face?   

A year ago today I was anxious, excited, and so very hopeful.  The night before your birth we gathered together as family to prepare for the big day that was just a few hours away.  The evening was joyful, full of love and laughter.  We prayed and sent your light up to the heavens with lanterns.  I watched the clock change hour to hour until I could get up and prepare to meet you.  My drive to St. Mary’s Hospital that morning was peaceful, I wasn’t afraid for your future.  My bag was packed and I was ready to go with your Daddy to Cardinal Glennon to be there during your surgery and to stay with you until your Mommy was well enough to get over to you too.  The hospital room was full of “Luca Love” paraphernalia, your painting, blankets, your bible, stuffed animal lions for our brave boy, and everything else your mommy and daddy could think of to celebrate you.  Team Luca moved in!  Father Blessing led us in prayer and we each gave hugs before you were to be welcomed into this world.  I sat next to your mommy on the bed and we embraced, holding each other tight, knowing that the journey that started 9 months before was about to come to realization.  All of the fighting for doctors to SEE your beautiful brain, all of the celebrating each and every milestone along the way, all of the conversations after each doctor’s appointment; it was finally time for you to make your arrival.  I rubbed your mommy’s belly where you were happy and cozy and told you that I needed you to breathe when you came out and that after that we would meet again following your surgery.  I told you I would see you in the NICU and I promised to not leave your side for a second until your Mommy and Daddy could be there with you. 

When your Daddy and Aunt Jess came in to tell us you were finally here they announced you came out and shared your cry with the world!!  You did it Luca Bear, you took a big breath and cried out that you were here!!  You were prepped for surgery and the team at Glennon was told you were going to be coming their way.  Father Blessing went with your Daddy to do your baptism and at that time it was decided that while it was AMAZING that you were breathing on your own, you would not be able to continue doing so.  The decision was made that you would not be transported for surgery and instead you would spend every single minute of your life wrapped in the loving arms of all of us, your family, and while there was such heartache that you weren’t going to surgery the amount of unconditional LOVE that filled the air was overwhelming.  I walked into the room and saw this beautiful boy tucked inside of a “Luca lion” blanket and I couldn’t wait for you to be in my arms.  I cuddled up with you and rocked you, kissing your cheeks and telling you how much I loved you.  You began to make the sweetest little sounds, cooing and talking with me.  The more I talked to you, the more you talked back.  That moment was pure magic angel boy and I can’t thank you enough for giving that to me.  

After your sweet soul went to heaven there were so many tears.  I remember a time when it was just me, you, your Mommy and Daddy in the hospital room and I lost it!  I was sobbing and heartbroken, your Mommy and Daddy held me while I cried and we mourned together.  You see Luca Bear, your parents have the biggest hearts of anyone!!  They had lost their perfect boy and yet in that moment they were there for me, comforting me, and helping me with my pain.

Before you were born I promised your Mommy that I would always walk beside her come what may with you and I meant it!  The inception of the Luca Hill Acrania and Anencephaly Foundation means that my duties as your Godmother will continue on!  I will do all that I can, Luca, to make sure your story is told and to shine your light on these life limiting birth defects.  We will support families, fund research, and search for answers, all while celebrating and honoring you baby boy.  We will not give up, we will be brave just like you, and we will find answers.

Over the past year I have seen you.  Only once in my dreams, but in a butterfly that flew into my house, a shooting star blazing through the sky, and in a unexplainable bright light in a photo taken at a celebration for you.  I hope that you continue to visit me that you always know how much I love you.

I was the lucky one who got to announce your arrival to the world and now I am lucky enough to share my letter of love for you with the world too.

All of my love sweet boy,

Your GodMaMa, Shannon