Skip to main content

Posts

Zoie Rae getting older 💜

It’s been 3 years since I wrote a blog. So long in fact that I had to download the Blogger App on my phone because blogging has changed and I couldn’t figure out how to create a new entry. I asked Ivie what she thought I should name this blog post after telling her what I was going to write about, and she came up with, “Zoie Rae Getting Older.” It’s pretty fun to have girls old enough to share my blog with! So, here’s my shot at sharing what it’s like to have a 10-year-old amazing needs kiddo, and some things that the world doesn’t prep you for as they get older, some life updates, and prayer requests too.  Alright, let’s be honest and start by saying we never thought Zoie would live to see 10, so praise God for this, and going an amazing whole year without a seizure! Miracles are all around us and I love witnessing them. As Zoie has gotten older and stayed so healthy we are navigating puberty and hormones with the help of an endocrinologist (a whole new team to our list of teams,) but
Recent posts

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

That extra Chromosome 21

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&#

Real and raw emotions

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.

The very best yes.

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

A letter to my Rae of Sunshine on your first day of Kindergarten

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