Life as we know it

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,)...

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...

I haven't blogged for a while. Life takes you to unexpected places, and these 2 girls keep me more than busy! I blog when I want to share a great deal of information, or need to get stuff off my chest and can't have the same conversation 20 times. Today we had the highest highs, and some really low lows. Maybe it happens that way so you find peace in a tough situation. We got a repeat, repeat, repeat, sweat test done for Zoie on Friday. She had two As a newborn, one 3 months ago, and one on Friday. Only 2 of the 4 have come back with results. Her newborn one read 36, Friday's read 80. What this means..... 36 was very low. If that's all we had to base her CF off of, we would say she doesn't have CF, but genetically she did, therefor she was on the cusp of having it. We wanted to do a repeat now to see if levels had changed, or if her CF had changed and what we needed to do as she gets older. Friday's was an 80. A ton higher than 4 years ago. This is bad, and good...

Okay, so, since we have never went on a family vacation, im not experienced on blogging them obviously. Bare with me, as I do my best to share in words with all of you,Zoie's Make-A-Wish beach vacation to Newport Beach, CA. Zoie's wish got accepted about 2 months prior to our vacation after going through several steps and an interview process with Make-A-Wish Colorado. Obviously Zoie couldn't tell us in words what her wish would be, but we know she loves the water, she loves textures, being outside, on walks, on runs, and music, so what better place to experience this all than at the beach! We choose Calofornia because it was fairly close, had Disneyland, we knew the temp would be tolerable, and Newport had the Boardwalk. Make-A-Wish was SO accommodating in every way, in helping to make sure first and foremost that Zoie's needs were met! Our family friend, Erin Hoffner threw us a wonderful, beach themed, send off party two weeks prior to our departure. Here, we got to ...

I remember when you were born, 4 very short years ago. School wasn't even in your dad and I's minds. It's almost as if we forgot that when you have a child, part of them growing up is sending them off to school. You would think this would have crossed my mind being an Elementary Ed Grad, but we were so caught up in the now, and making sure we took our lives day by day, that no, school never came up. We decided to keep you home for your first year of preschool, due to your Cystic Fibrosis and learning delays. We wanted to strengthen your immune system an extra year, keep working on home therapies to help your brain development, speech, and muscle movement. You also had a very special friend at home to learn and grow with you; your baby sister Ivie. The last year you two have taught each other so much, she has pushed you, and you have pushed her. I'm so thankful we kept you home for that extra year! We have found a great preschool for you! It's called the Monroe Ear...

My role as a mom is like peanut butter and jelly. Zoie is my peanut butter, Ivie is my sweet jelly. With Zoie, things can get sticky real fast, her diagnosis can complicate things in the blink of an eye. Ivie isn't quite as complicated or sticky, but we all know these healthy kids can be complicated too, just in different ways. In this circumstance, different colors. I'm lucky enough to have a peanut butter and a jelly kid, as im sure most of you are. Your peanut butter may be your little toddler who throws himself down in the middle of the aisle at Target, or your teenager who argues you about everything. Your jelly may be your sweet newborn baby who just lays there and sleeps all day, or your precious 5 year old who has started taking care of himself and given you a bit more freedom finally! If I make a peanut butter and jelly sandwich, it may look similar to yours, but never exactly the same. As moms, I believe we need to think of our bunches of kids the same way. My peanut...

I feel like I have so much to catch up on! Birthdays, running, doctors appts, and the girls have kept me so busy. Spring time is always the busiest time for us, even more so than summer! Okay, to get one thing out of the way, Zoie had a hard, or I should say, we had a hard appointment at Childrens two weeks ago. her checkups with CF and Neuro were perfect! She is in the 14th, yes 14th percentile for weight! This is huge for us! Her lungs were clear, her meds and CBD oil are "working" as good as expected for now, and her GJ tube swap was easy breezy. All of this was kinda overshadowed at the end of our neuro appt when our awesome, yes an awesome doctor asked us if we had done anything to prepare for the future. I have a weird relationship with our neuro doc. I love her because she is amazing at helping us manage seizures, and she's on board with CBD. I hate her because it's so easy for her to say to us "how Zoie will probably pass" or "have we thought a...

Hey Ivie Mae-bay. That's what I call you, either that or Ives. I can't believe you're turning one. It seems like yesterday I found out I was pregnant with you after one miscarriage and lining tests up to see if you were healthy. When I found out I was pregnant with you, I told your daddy and no one else for a while. We kept you our little secret for a while until we knew you were healthy. I think we knew deep down you were, because we trusted God, but the odds were stacked against you. You were "supposed" to have either Cystic Fibrosis or Microcephaly like your sister, so we call you our miracle baby. You didn't have either, and you were a perfect little baby growing inside of my tummy, so at 10 weeks after genetic tests confirmed you were a girl, we named you Ivie Mae. You and I got lots of bonding time your last two weeks in the womb. We spend those two weeks in Greeley, sitting on a bed in the hospital, as I got to hear and watch your heart beat 24 hours a...

It's been one year since we prepped ourselves for a scary surgery for Zoie; her VNS surgery to somehow help her seizures. Little did we know, it would cause my water to break, and that Derik would be taking care of a post-surgery girl all on his own. Taking a few steps back, last March 14,2014 we showed up to Children's, or I actually waddled in being 31 weeks pregnant and huge (I thought so anyways) to prep Zoie for a much anticipated surgery. I think we knew it would be easier to get it done before Ivie made her debut, and we were hopeful it would help Zoies seizures. I remember waiting in the room, Zoie in her little gown, spending time in the playroom to waste time until the operating room was ready. Around 11, we carried her to the CT Scan room where they would put her under, do a CT Scan of her chest for Pulmonary purposes, then wheele her off to surgery. That was tough. Laying your child down and kissing them and holding their hand, as they have no idea what's about ...

It seems like February creeps up so quickly every year. It means we are closer to Spring and warm weather, we did our 65 Roses Fundraiser, Valentine's Day, and Rare Disease Day is Saturday Feb 28th this year. I never knew what a rare disease was, and I say this not proudly, but nor did I care a few years ago. I was in a, "life is perfect, life is beautiful, nothing bad ever happens" type of world. I wish someone would have informed me about some rare diseases, how to learn about them, how to bring or raise awareness for them, and how to support someone who was going through something like this. But, no one did. So I'm going to be that person, and inform you, and probably tell you more than you want to know, but knowledge is power, and maybe by sharing some of these things with you that you may not know, you will one day be able to help someone. Or even be there for someone. Rare diseases suck. They suck because with 90% of them, you will hear the word fatal. Fatal me...

After our few recent Hospital stays with Zoie because of seizures, and med changes, we were hoping for a week span between seizures. We made it four days and she had one today. Not a bad one, more because she was exhausted from waking up at 5:45 by her choice and not letting her brain settle down enough to nap. At the time, I get frustrated, mad, and loose patience from these dam things, but after hours of Parenthood, and cuddles all afternoon from my girls, I said to myself, "at least they stopped, weren't in her sleep, and we went four days without any :) I have to pull the good out of each day, or lots of days would stink. So now we keep waiting for the new meds to take full effect, pray and wait for the red card. One step at a time. Even with seizures we had a fantastic day. We delivered Valentines to all Zoie's little friends, I got my yummy iced coffee because I'm always tired now days, we went through all the 12-18 month summer clothes that soon my little Ives ...

Does anyone else get the Sunday Blues when Christmas is all over and you're taking your stuff down saying, " sheesh that went fast! Now what?" I do. And it happens every single year. Although, it would have helped if our snow would have come a little sooner rather than these 50 and 60 degree temps. That didn't help make it feel like Christmas one bit. I'm a Christmas lover. Lover isn't even the right word. I eat, live, and breath Christmas for as long as I possibly can, or as long as my husband will let me. It makes me feel cozy inside! As I went through Starbucks today to order an Eggnog latte, they said they were out for the season..... How are they already out before New Years is even here? I have the lady grief at the window! It's like they were excited to get their red cups out of there along with their eggnog or something. Ha. My family had a beautiful Christmas. It was perfect. I was such a nervous wreck leading up to to because it's always a r...

November is usually the start of the holidays for us. We used to wait until almost Thanksgiving, but since having kids, it's necessary to start much earlier! I'm sure my husband would agree ;) With that, I'm leaving you with my most favorite things about the month of November. Christmas movies! If it were my choice, we would watch them all day everyday. The music, the happy endings, and how they make you feel all fluttery inside. Some of our favorites are Home alone 1 & 2, the Grinch, Christmas Story, Elf, Miracle on 34th street, and Christmas with the Kranks. Starbucks holiday drinks and the red cups! Pretty much, it's Christmas in a cup! Traditions: we love traditions that start in November! One we started three years ago was hosting Thanksgiving at our house. It's nice to have the girls at home and be able to cook for everyone. A new tradition we started this year was inviting our family with Turkey Tickets. Each person must fill out their ticket with ...

Derik and I raise money for Cystic Fibrosis year around. We have never raised money for epilepsy. Let me tell you why. CF is easier for us to deal with than epilepsy is. I'm not comfortable with epilepsy yet, even after seeing my daughter struggle with seizures for three years. We avoid it, because it's a touchy subject. But, with that said, November is Epilepsy awareness month, and in honor of my sweetest Zoie, since Nov has 30 days, I give to you 30 things we, not everyone, has experienced with seizures and epilepsy. I'm hoping this helps me by opening up a little about a "not so easy" subject, and that it let's you all into our world a bit. With this, be kind to the families, friends, and people who struggle with epilepsy on a daily basis. It's not easy. *Zoie had her first seizure when she was 2.5 months old *She was originally diagnosed with meningitis *at 4 months she was diagnosed with microcephaly or small head which was now the cause of her epi...

Halloween is a few days away and it's one of our favorite days of the year at our house! We love being in a friendly neighborhood with lots of fun houses and kiddos to go visit. We have run into a problem the last two years with Zoie though and her basket full of candy; she can't eat it. Not because she is allergic of has allergies, but because she has scensory issues with chewing foods and is also what we call a tubie :) Zoie eats puréed foods only during the day, and gets tube fed at night. When Zoie was 9 months old and so tiny, we along with her CF team make the decision that literally saved her life. We would have doctors place a GJ tube to the left of her belly Button that we could use to pump extra calories in her, rehydrate her when she is sick with water, and put her meds in her morning and night. She wouldnt be alive without it. When we heard through a friend that people were participating in the Teal Pumpkin Project for kiddos with food allergies, it only made sens...