Minisode: When RARE. Found Me
This one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there forever without being polite enough to ask for permission. That’s the thing though right? You don’t get a say with a rare disease. You don’t get to choose. But maybe that’s a good thing. Because if I got to choose beforehand I wouldn’t have one of the biggest blessings God has ever given me. This was a choice I’m grateful I didn’t get to make. Two and a half years ago our lives changed forever. I gave birth to Owen. My 12 pound chunky as all hell blessing. A boy whose life flipped ours upside down. Owen was born with Beckwith Wiedemann syndrome a disease I knew nothing about and had never heard, along with pretty much the rest of the world. Many of you here are Beckwith families who I am incredibly thankful for. But for the ones here that aren’t, I’ll give you a quick rundown of what bws is. Let me add my famous disclaimer. I am not a doctor but a mother on a mission. A mission to learn as much as I can about my son's disease, raise awareness in the process, and connect with anyone I can. BWS is an overgrowth disorder that affects Owens rate of growth. Hence why I gave birth to a toddler! One of the risks of BWS is an increased risk of developing childhood cancer. and as September is childhood cancer awareness month it seems pretty fitting to share Owens's story. Owen is screened with abdominal ultrasounds and bloodwork every three months. There’s a lot of other aspects of this syndrome that affect Owen but for myself, this one is the hardest. This is the one that constantly has bws mothers on the edge of our seats. Some of us manage this unknown aspect better than others. For myself, I go in waves. Sometimes I am doing fine and then other times I really struggle. You go from having a clean cancer scan and being on top of the world to a feeling in the pit of your stomach I can’t quite put into words. It’s a constant roller coaster of emotions. Not to mention the stress the scans bring. We try and make them as fun as we can but Owen hates the bloodwork. He fights like hell and begs me to rescue him. Nothing hurts your heart more as a mother than hearing your child beg you to help him while your the one helping to hold him down. That’s a trauma that sticks with you as a mother.
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