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Showing posts from 2018

Miracles

Our last sweet babe, is about to turn one. I remember the days when I used to think that babies came when you wanted them to; in a certain season, a certain month, or that you could even pick how many kids you were going to have. Then, you slowly realize that God may have a different plan for you, but it’s going to be even better, if you can just trust him, and hang on for the ride. I’m about to share with you, a letter I sat down and wrote to Charlie for when she’s a bit older, wiser, and may have questions...... To my sweet Charlie Fae- I bet you always wondered why we decided to name you Charlie. Your dad choose it really, we had it picked out long before you were created. We always said, boy or girl, “it’s” name will be Charlie. Your dads name is Derik Charles, so this was our way of you, having a piece of your daddy’s name. Now that we know you, and your personality, Charlie Fae is the perfect fit for you. It took approximately 2 years for us to have you. From start, to holding

To be the mom of a medically complex child

Today we celebrate World Rare Disease Day. To me, this means celebrating Zoie, for all that she is, and all that she will be. Being the mom of a medically complex/medically fragile child, is the true meaning of bittersweet. You spend your time full of emotions, not being sure what tomorrow may hold, which rings true for every single person on Earth. Zoie has Cystic Fibrosis which is a lung disease. Because of this, she is more likely to develop colds, coughs, lung infections, which can all be deadly. Zoie has Microcephaly. This means her brain is smaller than average, which causes her to have severe learning disabilities. Zoie has epilepsy. This causes her to have seizures which are managed by 3 different daily medications, a VNS implanted in her chest, and CBD oil. Zoie also has Cerebral Palsy. This is why she cannot walk, crawl, drools often, and has trouble holding things. She’s what doctors call, “very complicated.” Being the mom of Zoie, means that when you go to have other childr