One thing I wish I had known about during my first pregnancy was what an amniocentesis test was. 
It wouldn’t have changed my decision to have my son… not for a second. But it would have given me time to prepare, learn & understand what life with a genetic disorder / gene mutation might look like.
My oldest son has neurofibromatosis (NF1) Because of his diagnosis, he sees multiple specialists every six months & undergoes MRIs under anesthesia + echocardiograms every three-six months. It’s become part of our normal, but it was a world we were completely unprepared for.
My son is the brightest light. He’s full of love, resilient beyond words & the strongest little boy I know. When he was just 3 years old, doctors found multiple tumors on his cervical spine. One week after his birthday & while I was 26 weeks pregnant with my second son he underwent cervical spine surgery. Surgeons removed four tumors that were completely compressing his spinal cord. To this day, they still don’t know how he was walking, using all of his motor skills, or even breathing the way he was. He truly is a miracle.
Nothing prepares you for watching your child suffer. Nothing prepares you for wishing you could trade places with your baby & take every ounce of their pain away. During that season, I was so focused on helping my firstborn get through surgery & recovery that there were moments I forgot I was even pregnant. Every thought, every prayer, every bit of my energy was poured into him.
Recovery wasn’t easy. He had to relearn how to walk, regain movement in his neck & spend countless hours in physical therapy. Watching such a little boy work so hard was heartbreaking, but he never stopped fighting. His strength & determination is what I’m so proud to witness.
Because of everything we experienced, I chose to have an amniocentesis during both my second & third pregnancies. Thankfully, everything came back normal genetically & having that knowledge brought me so much peace.
If it’s an option available to you, it’s something I would encourage you to talk with your provider about. I know there are risks & that decision is deeply personal. But for me, having answers earlier would have made all the difference in how I prepared… not in how deeply I loved my child.
Having more information simply gives us the opportunity to advocate for them from the very beginning & if there’s one thing my son has taught me, it’s that strength can come in the smallest packages. He has overcome more than most people will face in a lifetime & yet continues to shine his light wherever he goes.
this post is for you my boy. 
it was definitely a hard post to write. It brought a few tears because it reminded me of the hardest season our family has ever faced. I cant believe at the end of the month it’ll be 2 years since his surgery.
