Life as we know it

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...

My original OB doc sat me down 8 weeks ago and told me she wanted me to see a specialist for our 20 weeks ultrasound. Not because there were any factors pointing to abnormalities, but because I'm one of those weird people, who no matter what we do, we get thrown curve balls when it comes to pregnancies and births. Walking into that appointment today, Derik and I had zero fears, and zero doubts that everything was going to be perfect. And perfect she was! 10 little fingers, 10 little toes, a big ol' noggin, 4 chambers on her heart, and she was moving like crazy. Let me back up and say that Derik and I took the necessary steps we felt we needed to to ensure that we have a healthy baby. But, we also know, that in the end, God is in full control and it's His plan. Always! So, after looking Charlie Fae over, our doctor proceeded to tell us that she has a white spot on her heart. It's not small, but it's also not large. This white spot is a sign of Downs Syndrome. I can...

My name is Lindsey. I'm a wife. I'm a special needs mom. I'm a regular mom. I'm a friend, a daughter, a sister, and a believer in God and miracles. Bedore you question why I'm writing this, let's just say that writing helps me, it's like a form of counseling, plus, both my girls are tucked into their beds sound asleep and I felt the need to share what happened today. Going back to being a believer, I used to be SO good at closing my eyes every night and thanking God for giving me another day with both of my daughters and my husband. I started this prayer (it's a simple one) when Zoie went a few nights a year or so ago, with seizures that lasted all night long, and I had to sit up and watch her, just to make sure she was still breathing. It made me thankful, for the simplest things in life. As time went on, and "bad" stuff doesn't happen, you forget to be thankful for the simple in life, the things that truly matter. Today was a normal day....

I started reading a book the beginning of the year, and I'm just wrapping it up. It's titled, The Best Yes, by Lysa Terkeurst. I found it fitting, every single piece of it, in relation to 2016 for my family and I. I don't know about you all, but life's demands of being a wife, mom, daughter, friend, God-loving, and healthy human being is hard, really hard, and it's exhausting. Pretty much, I'm always "tired as a mother." ;) As we wrap up 2016, and as I reflect on this last year, Derik and I have had many best yes moments, and when you say yes, and make a decision to do something, you run full force with it! Life is full of decisions, and it's your choice to say yes or no. I've also learned how to say no, especially if it's something I really don't want to do, or if my schedule is too full, you say no. Trust me, the people who truly love you are okay with you saying no. Saying no, has taught me to prioritize, it's relieved stress, i...

Oh Zoie. We have officially made it to Kindergarten. You my dear, are a smiling, rolling, laughing, beautiful, God-filled miracle. I once said, "if Zoie lives to see 5, and see Kindergarten, my life will be complete." You have far outweighed our expectations, and just so you know, you have many, many wonderful years ahead of you. We have set new bars for you, and plan to do so often, because this world needs you and so does your mama. I never really planned what it would be like to send you off into this world of Kindergarten, and here we are. We have just read The Night Before Kindergarten after I downed 2 glasses of wine because my nerves are so bad and have been all day. Your "first day of Kindergarten" sign is made, your outfit is set out with the new Etsy shirt I ordered you, your backpack is stuffed with your AFO's and hand splints that we promised your teachers, and I just spent 3 hours of my afternoon reviewing your healthcare plans from the school nurs...

I started running right after Zoie was born. As a mom, it was something I enjoyed. I could pop her in the stroller, get fresh air and a workout while still being with her, but doing something for myself. At that time I was only running 2-3 miles. But, Zoie has always known running, and what it feels like from her side of the fence (being in a stroller with fresh air on her face.) After I had Ivie, I had gained close to 40 lbs with a preemie and needed to get my weight off somehow. So I picked up my running. I set goals, I got a new, 2 new 😜 Double joggers, and I started slow. Pushing an extra 150 lbs isn't easy, but it kicks your butt into gear. One of my goals was to run a half sometime in my life since all I knew was 5K's. So I trained with my girls by my side for 3 months and completed my first half in May 2015. It was easier than I had thought, for being my fist one, but I didn't realize what it physically would make me feel like afterwards. This is when I remembered s...