A Very Special Case.

Let me tell you all about the boy that is the inspiration behind A Very Special Family. Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and...

Being a medical mom is hard, beautiful, exhausting, rewarding and often messy. When you walk in our home and look closely, you'll see medicine on our ceiling, formula stains on our furniture, medical equipment in corners and medical papers stacked so high, you'll think we are applying to be the stars of the next Hoarders.                                                                    Before our son Case was born a clean house, order and organization were very important to me. Before leaving the house, I made sure everything was straightened, and the main rooms were swept and vacuumed...It sounds insane 8 years later. Things are so different now. Instead of living in a predictable world, we live in semi-orderly chaos. Our days are long and are nights at times are longer. Getting going in the morning is like a...

Stop letting your child’s milestones make you sad. Your kids are growing. There are things you’re going to miss. You’ll miss their tiny toes and the way they let you hug them in public. You’ll miss picking out their outfits and the way they said “tickledy” instead of "that tickles". I get it, I do but I also see the other side. You see, I live in a community where moms don’t get all of that or any of that....They don’t get first words and first bites. First holidays aren’t always spent passing their baby around while they beam with pride and joy. Sometimes, there are no words at all and first holidays are spent in hospital rooms. Sometimes, first days of school look different and sleepless nights don’t end. In this world we celebrate milestones and next steps because we didn’t know we were going to get them and some of us never did. So, momma don’t let them growing make you sad. Let it be a reminder that life is short and full of new phases.  They are growing up and that...

"At least it isn't Sepsis" I whispered to myself a half a dozen times this week when life wasn't going "as planed" and inconveniences popped up at almost every corner. It was one of those weeks where one annoying thing after another happened. A flat tire on Valentines day, A broken heater in the dead of winter, the dash of the car that's not in the garage lighting up like a Christmas tree just to name a few. 15 years ago when we were low on funds and even lower on life experience this week alone would be enough to send us to push us over the edge. Then life happened. We saw real chaos and heart break. We handed our son over for dozens of invasive surgeries including a full scull repair, multiple abdominal surgeries and even surgeries that days afterwards failed, split right at the seems. We've sat bedside during painful intestinal folding and even blockages that wreaked havoc on his gut and took months to heal. We've handed his unresponsive littl...

I have a confession to make...sometimes it's hard to be happy. Right now, actually I'm in a place where happiness isn't coming easily. Honestly, it's embarrassing to write. I should be so full of joy. With a great job, four beautiful kids, a hard working, loving husband and a roof over my head why wouldn't I be happy? Is it that I' ungrateful? No. It's not that.. Is it that I'm depressed. Nope, depression is dark and debilitating and awful and this is just a nagging blah that I wake up in the morning with some days. Don't get me wrong, I find happiness. Happiness is Lainey holding my hand at the end of the day telling me a funny story about school. Happiness is kissing Case's freshly washed face goodnight after he's fallen asleep. Happiness is watching my two oldest help each other navigate Jr. high drama, academics and life in general. Happiness is all around me but sometimes I have to look harder to find it. Sometimes I have to be intention...

You read the title and if you're anything like me you thought, "Oh, here we go....ANOTHER weight loss story. She's probably going to try to sell me something or even worse tell me how she gave up carbs, protein, fast food and showers then BOOM lost 50 pounds". Seriously, that's where my mind would go and I'm not goin to do either of those. I'm not going to go into my past or my childhood relationship with food and tell you that my my overeating and love for all things sweet started in Kindergarten because it didn't. I was naturally thin until I started having kids honestly. During my my pregnancies I gained 40, 50, and 60+ pounds. Sometimes, I held onto half the weight of the pregnancy before and then would gain some. After Case (our fourth and last baby) It was a roller coaster of losses and gains, Simple stresses like on-going insurance issues, prolonged hospital stays and DMES that never kept their promises would cause stress eating. The big, scary ...

In honor of the amazing holiday season that is slipping by us so quickly, I’m going to list out a few of my favorite things! The things that help me keep my head above water, help me stay healthy and save me sacred, sacred time! As a mom, career woman, caregiver, mock nurse to our youngest with many medical complications and the crazy lady in charge of keeping all of this afloat, I need help. I need energy. I needed to find resources to help because, like most every mom, I can not do this alone!  So, without further ado and in no particular order, here are 10 of my favorite things. My time saving, self caring, mom friendly, favorite things! WalMart Grocery Pick Up. Seriously guys, this is a GAME CHANGER! If it’s available in your area and you aren’t using it, start. Now. Close this blog and make your grocery order! An easier life is just a few clicks away.... Amazon Subscribe and Save. Truth: I haven’t bought toilet paper from the store in over a year! I get my paper produ...

Oh, December I have a love-hate relationship with you. I love you because you’re December!  You sprinkle beautiful, white bliss all over the dread grass and bare trees. You bring comfort and joy! You host the holiday that I’ve loved since I was a child and love even more as a mother! You are beautiful and giving. You’re full of cookies and eggnog and all of my favorite foods. I LOVE that about you. But....I struggle with you. Every year, I struggle with you. You bring sadness and painful memories. You remind me of everything that was almost taken away from me. You remind me of how close I was to losing my son. You host memories of unbearable news and long, heart wrenching sonograms. You are the month that held the words, “prepare to bury  your child” and, “your baby’s body is broken. He just wasn’t wired right”. You hold lies. You remind me every year of the scary 24 hours before you marked our son's December 21st birthday. The 24 hours of breath holding, non-stress testing a...

Guys....I used to be TERRIBLE at this. Now, I’m just not great at it. Living in the moment. It sounds easy enough but really, it takes conscious effort to enjoy the good life gives you while NOT dreading what feels like the inevitable. Whether it’s another hospital admission, a decline in my son’s health or a new, scary diagnosis. It’s a mix of fear and anxiety. It’s total lack of control. It’s a lot of things but what living in fear of the future really is, is giving into the thief of living joyfully in the moment. Whether the fear is loud and noticeable or a consistent white nose playing in your brain, it’s toxic. Honestly, it took me years to even realize this is what I was doing. I knew I was worried all of the time. When my phone would buzz with a text form whoever was caring for my son or Case felt even slightly hot I started planning a hospital stay in my brain. I’ve planned hundreds of these that never even happened. This isn’t something I’m proud or even like talking about. It...

The holidays are CRAZY. Add kids, they get crazier, add a child with any kid of extra needs or medical complications and they sometimes can feel unbearable....The holidays are supposed to be fun, the happiest time of the year and I know for me, they can get stressful. I have often let worry and anxiety steal all of the beauty and joy the holidays hold. As mom's and dad's of special, medical kiddos, we need to take that joy back! I see some of you and you are SO good at that! You are usually just so happy to be out of the hospital for another holiday that nothing else matters and you do what works best for YOUR family. You enjoy the holidays because you've been doing them long enough to know what works and what doesn't. You've started some new traditions and maybe don't force some of the old ones because they don't jive well with your new normal. Guys, if you haven't already, it's time to TAKE THE HOLIDAYS BACK! Here are ten tips, tricks and hacks t...

Taking care of a child with complex medical needs is the hardest thing I've ever done. By hard, I don't mean impossible or miserable just hard. Our son Case is seven years old and has a list of medical needs longer than my arm and it would take an entire blog to list them all but lately, his biggest battle is a severe intestinal disorder. He is feeding tube and IV nutrition dependent. As parents, Dan and I don't just care for him medically, we order meds, make sure supplies come on time, go to IEPs and therapies, visit specialist after specialist after specialist. We've watched him endure so many invasive medical procedures my stomach turns when I allow myself to really think about it. That's just the short list of what medical mom's and dad's endure. One of the most frustrating battles we have had to fight is the dreaded insurance battle.... Within the past few months, our son’s primary insurance (the one we pay for, not the one through the state) started...

Blessing vs. Burdens. Click the link below to watch my thoughts on CHOOSING to see the hard as a blessing not a burden! https://www.youtube.com/watch?v=BnlRyw8Ntyc&feature=youtu.be

Guys, I still need you. We still need you. 7 years into this crazy journey I still don’t have my ducks in a row. Heck, I don’t even knew where half my ducks are let alone have them in a row...The truth is, when your child has a chronic illness or special needs of any kind, chaos follows you. It doesn’t end after a long admission or surgery number umpteenth. It’s always there, even on good days. When you parent a child who needs 24 hour care you tend to LOOK like you have it all together when in reality, you are like a swollen water balloon in a field of porcupines. Just take a moment to visualize that...a water balloon with arms and legs trying to navigate it's way through a treacherous field of horror. The moment it loses its balance or something goes wrong, it pops and then, it slowly picks all its piece up and tries to put itself back together. That’s me. That's all of us. The tired, the worn, the perfect looking, the crazy, the mom’s and dads of medical miracles. Most days,...

Hello my name is warrior .  I am fierce and strong. I fight battles I never dreamed I would have to fight. I am fearless even when I'm afraid and fight until the battle is won. I run on love, adrenaline and coffee.  When the day nears it’s end, I wipe the sweat off my brow, close my eyes and rest. For tomorrow, another battle may rise.  Hello my name is Momma Bear. My cub is my world. You mess with him, claws will come out. I do not walk around looking for a fight. I am content caring for my cub and spending my days as peacefully as possible. But....if you fight me, I will fight back. I will appeal and appeal and appeal when I know something he really needs is being denied. I will put my foot down and insist he gets the surgery, medication, nursing hours and respect he so very much deserves. I will roam the lands in search if the best doctors, insurance and treatment.  I'm not an angry momma bear but I will roar when I need to.  Until my last breat...

You know how you take your child to get a shot and promise an ice cone for afterwards? Something small and sweet to put a smile back on there little faces. Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it..... You see, sometimes my son  has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated.... After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel be...

Every year since my husband and I  got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family.  We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain.  When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip.  When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go.  All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip...