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 children, you use doctors to help, to ensure you have a healthy baby, because let’s be honest, Derik + Lindsey’s genes together, aren’t good. But, it also means that you will have a whole new appreciation for science and God working together, to get you these perfect human beings. Being the mom of Zoie, means that when you buy a home, you look at every little detail. You don’t buy a home because you love it. You buy a home because it’s goimg to work well for Zoie. But, you make it home, and are so incredibly thankful you have a beautiful home for your family. Being the mom of Zoie, means that you don’t work, because you’re the only one who can feed her by mouth, and her life depends on you. But, you also love the fact that you get to spend so much time with all 3 of your kids. Being the mom of Zoie, means never getting to sleep alone with your husband, and that there’s always a feeding pump beeping, interrupting your sleep cycle. But, you’re incredibly thankful that you have the type of husband, who understands that this is just the way it is, and to be thankful for the extra snuggles from Zoie every night. Being the mom of Zoie, means trading in your Honda Pilot, for a Mom van, so Zoie’s equipment has a place to go. But, in reality, you love the mom van, because let’s face it, the extra room is amazing! Being the mom of Zoie, means cleaning up poop, on the daily, in chairs, in car seats, on the floor, on the bed, becaause she will never be potty trained. I don’t have a “but” for this one...... Being the mom of Zoie, means having at least 3 appointments a week. Some may be therapies, some may be blood draws, and some may be clinical visits to Children’s Hospital. But, you will gain so many friendships out of these people, your support system widens, and these people, along with Derik and I, become Zoie’s voice. Being the mom of Zoie means dropping her off at school, and getting as much stuff done in 3 hours as you can, because let’s face it, it’s dam hard to shop with a wheel chair, newborn and toddler. I mean, where do you even put stuff? But, you’re so thankful, because you have found her the most amazing school, and a mama needs a break! Being the mom of Zoie, means your circle of friends becomes small. You loose some because you have zero freedom, you loose some because people don’t understand, and you loose some, because that’s just part of life. But, you’re so thankful, because those few best friends you do have, love Zoie as much as they love me. Being the mom of Zoie means when you plan a vacation, it takes a year, and you get to know the flight attendants and pilot way ahead of time, because if she has a seizure on a plane, they will be the ones to be sure you don’t have a panic attack. But, once you get to that destination, you breath, you thank God, and you are so thankful that your kiddo gets to see the ocean. Being the mom of Zoie, means you can’t just go on a date with your husband. I mean, do you know how to deal with seizures, or do night meds through a tube, or lift a 40 lb girl? But, when your parents agree to watch her for a few hours, and you finally get that date, it’s amazing! Being the mom of Zoie, means sitting in a doctors office, talking about about signing a DNR, bawling your eyes out, and telling that doctor to pound sand. But, it will show that doctor how strong your faith really is. Being the mom of Zoie, means praying every night, that she wakes up alive the next morning. But, when she does, nothing else in the world matters, because your baby girl is getting another day. Being the mom of Zoie, means knowing she will go to Heaven sometime, and it could be months, or years. But, you look at how well she is doing, how much she is thriving, and you know, or hope you know, that you have many more years with her. Being the mom of Zoie, a medically complex and fragile child, means that sometimes loving her hurts. You love her so much, and absolutely wish you could take some of her troubles away, but you can’t. But, what you can do, is give her the absolute best life, make sure she knows she is always loved, give her two sisters to play with, make sure she smiles, laughs, and gets hugs everyday. But, most of all, make sure you pray with her and for her. Being the mom of Zoie, means you’re getting to experience something no one else gets to, and that’s being her mom. Here’s to rare, and loving rare. Cheers to you Zoie, I’m so proud to be your mom.