4 years ago, my life changed in ways I never imagined it could. On July 29th, 2015, I gave birth to a baby boy who, has come to be the catalyst for a life of betterness. Body, mind and soul, for myself and anyone I come into contact with. He was a catalyst for that when he was here, physically, and though I thought I knew the rocky road we ahead in the world of Down Syndrome, I surely had no idea the real road I would face when I awoke the day he passed away and physically left our lives.
I have so many people say to me all the time, “You’re so strong, I don’t know how you do it”.. etc etc… Courage. I am a brave woman who refused to let the abyss swallow me when I wanted to just die. Because, I did, just want to die. The courage to continue and endure is what makes us stronger. I faced every pain and truth within myself and was real and raw and began, little by little, to gain understanding of myself, my illnesses and my grief and the list goes on. It’s a ripple effect in positive ways into almost every piece and aspect of life when we can admit our truths and live real within them. Just as my grief or mental illness touched every part of my life, so did the healing and positive that came from a better sense of self and, just a ‘wee’ bit of profound loss to remind me that I am still here and have survived trauma and what I will say are THE 2 worst days of my life. I am grateful and blessed for surviving. Gratitude, humility…. empathy.. 3 things that have enriched my life for the better and I am again, so grateful and blessed to understand just how much more powerful they are than self-entitlement, selfishness and ignorance.
Brandon’s loss paved the way for me to understand how to live better, live real and without any justification to anyone but, myself. Brandon’s journey in his short time, reflects exactly what I had to do, to get my life together and back. He endured major surgery at 72hrs old, struggled in and out of the NICU, had holes in his heart, struggled for breath at times however, he had the courage to fight and continue through what came to be his hardest days and what an impression that made on me, in healing and recovery. I had holes in my heart and soul while gasping for breath to find a better way to survive and be. Hindsight is always 20/20. I learned during that healing to live in the moment and create boundaries so I stopped living in hindsight. Mindful of everything around me. Allowing and giving positive only and boundaries…. oooooh the boundaries I’ve learned to NEVER waiver on, ever again.
I also learned never to waiver on the fact that there is no set schedule for my grief, I’ve made peace with the ever fluent waves that come crashing and I also learned to be patient and kind to myself and do what needs to be done to keep moving forward, even if that means I’m not progressing as fast as I’d like. In the wake of Jamie’s passing, I lost sight of that and began to fall into the swallows of grief and now carrying more grief than I could ever have imagined I would again, for Brandon, for Jamie and for my Jackson who lost those same 2 humans we both loved so dearly. Life was put on hold again last year and coming into 41, I turned to my best friend and wondered when it all becomes just an excuse to not progress at all. But, I am progressing. I’m still picking up the pieces to continue building the foundation I have had to rebuild.
I take a step back and remind myself what I have survived and be kind to myself and all those who love and support me for just getting it. I’ve taken this summer as a “0 fucks given” deal and have lived and laughed with some truly incredible people who make my life better. I’ve met a few more awesome people who have let me in and shared and vice versa and it’s such a wonderful feeling to know, that not one of them lays judgement or expectation. I’m blessed.
This blog is for my beautiful boy. My sweet Brandon who rocked his designer genes and showed me what brave looks like, how to endure and keep on breathing… It is for him because if I had not watched and felt his breath leave his body, under my lips, I would not have the gratitude and appreciation that I do for breath and life today. You and your purpose is embedded in my life and how I live everyday and I despise how it came to be however… I know this is that path that was paved and I keep on walking.
I love and miss you dearly, my Rockstar. Happy 4th Birthday above. I hope you are soaring.