Those Designer Genes…

This past few weeks, my son Brandon has been so present in my mind and thoughts. He always is, however, these thoughts aren’t the ‘norm’.

March 21 or 3/21 marks World Down Syndrome Day. Brandon was born with Trisomy 21, better known as, Down Syndrome. I celebrate this day with family, friends and professionals worldwide and always will. They have all been touched in some way by one simple, little, extra chromosome. Just like how Brandon’s short life with DS, touched mine.

Getting Brandon’s diagnosis… terrifying. Life changing. A month at McMaster Children’s hospital, in and out of the NICU after emergency surgery to repair a duodenal atresia, issue after issue, all while trying to absorb that I was now the mother of a child with a disability and there were no if, and’s or buts about it. Brandon would always have Down Syndrome. Wrapping my brain around that was not difficult, but, it was taxing. I started researching the crap outta DS, found the Down Syndrome Association of Hamilton and joined support groups via social media and was welcomed into a world of human beings who supported and cared beyond borders. A virtual family of support for this new life path we were now embarking on. Overwhelming support and visions of success in what in the ‘old days’ of DS seemed impossible. I was getting messages from parents young and old about how much their lives had changed for the good when that extra chromosome came into their life. I managed to gather it all together and was able to envision a productive and successful life for my sweet boy. I had hope in heaping loads and felt the strongest purpose I had ever felt in my life. A new path had been paved.

My recent thoughts have been around all the beautiful things I envisioned for my sweet boy and all the milestones we will never get to or celebrate. I mean, we didn’t even make it to his first birthday. It was gut wrenching, soul crushing and devastating to see the new path I thought we were paving, GONE. Literally, overnight. The solid stepping stones were ripped from beneath me and everything I thought I was doing and knew was gone. All the dreams, wishes and aspirations, GONE. I felt I had failed as a mom. I luckily had a coroner who took the time to make very clear to me that no matter what, there was nothing that I could have done. This wasn’t my fault. Had I gone left not right the day before etc, it could not and would not have changed the fact that SIDS takes the lives of infants without any known cause. In the wake of Brandon’s passing, I struggled desperately with the why. What was the purpose, his purpose? Brandon became a catalyst for my recovery and I made peace with my own thought that his purpose was to remind me that I still have purpose and I ran with it and had massive success.

It’s been so difficult walking a path of heavy grief again. I’ve been here. I did this already and I’ve been so angry at times knowing I’m again grieving and feeling like I’m not progressing forward after all the exhausting and deep digging I did to be able to keep moving forward in the first place. I keep thinking to myself over and over again, be all the things you loved about the person you lost. I am desperately trying to be, trust me! My mental health gets in the way sometimes and I’ve had some ridiculous hiccups from asshole humans along the way since early 2018, however, feeling like you’re running to stand still and doing all the work all over again that you thought you already did… It made me want to give up. Than I see my thoughts about Brandon, all the milestones I grieve for us to not celebrate with him, all the strength and endurance he showed me through being poked and prodded in his first 35 days of life. How can I give up on me when I would never have given up on him. No different than any of my children. Especially Jackson. What is me giving up going to serve into our already torn apart world? Nothing, except more pain and my Jackson has endured enough loss already, just like me.

I’m re-drawing lessons, strengths, thoughts from Brandon’s passing and the aftermath. I’m remembering to keep on fighting just like he did. To be courageous, like him. To hit milestones and celebrate them because had I not had my experience with Brandon, I may not truly know just how momentous they are or how my designer genes which are rich in mental health diagnosis make me my very own designer gene rockstar, just like him. I remind myself that I can endure, just like he did. I have endured and I am still standing despite it. When you awake to a lifeless child in their crib and frantically go into panic racing for a phone to dial 911, desperately trying to put breath back into your child, well, that changes you, just a wee bit and it’s enough to break you. Facing a second traumatic loss has just complicated things but, I’m still navigating while standing and I have Brandon to thank for that. Without his life, his lesson that different is beautiful, that courage and strength come in some of the smallest packages, I would not be here today. I found beauty within unimaginable pain and it can be done in any and all situations and scenarios if only we are patient enough to allow the stepping stones to fall where they may, on their own.

Thank you, to my Rockstar Brandon. You were and still are a gift and person I draw so much from. You never steer me wrong. We miss and love you, so very much. These next steps for me are dedicated to you. I love you, my sweet Brandon.

To learn more about World Down Syndrome Day click here:

https://www.worlddownsyndromeday2.org/about-wdsd


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