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This one might be a little difficult for me. As much as I put my family out there it doesn\\u2019t make sharing my story any less difficult. My story isn\\u2019t tragic. It\\u2019s not depressing. It actually is quite the opposite. Don\\u2019t get me wrong there are hard times, there\\u2019s a struggle, and loads of stress and uncertainties \\xa0 But among all the bullshit there are more blessings than I can count. I\\u2019ll 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\\u2019s the thing though right? You don\\u2019t get a say with a rare disease. You don\\u2019t get to choose. But maybe that\\u2019s a good thing. Because if I got to choose beforehand I wouldn\\u2019t have one of the biggest blessings God has ever given me. This was a choice I\\u2019m grateful I didn\\u2019t 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\\u2019t, I\\u2019ll 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\\u2019s 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\\u2019t quite put into words. It\\u2019s 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\\u2019s a trauma that sticks with you as a mother.\\xa0

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you\\u2019ll check out Chili and see why I love their products so much.