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...

It’s true. I am a terrible soccer mom. I don’t like the bugs and the porta potties. I dread spending a good part of the evening or Saturday morning sitting in a muddy field listening to my kids whine that they are hungry and bored when all I really want to do is put my sweatpants on and drink wine on my couch. I’ve successfully avoided volunteering for the mandatory confession stand job for an embarrassing amount of time. And worst of all....I’ve MISSED games do to work and (usually) don’t feel guilty about it. Okay...before you start thinking I’m a terrible mom (too late?) let me explain...I love my kids. I love them so much my heart could EXPLODE. They are smart and funny. They are kind, considerate and helpful. And mostly, I really enjoy spending time with them and even though I’m a terrible soccer mom, I love watching them improve each season. I love watching their faces when they try to pretend they aren’t over the moon excited about the goal they just scored or the assist they ju...

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...

Childhood chronic illness does not discriminate. If you have ever walked the halls of any Children's hospital, you have seen this. It doesn't matter your race, religion, background or social status. Chronic illness doesn't care. It comes for you and leaves no one in your family untouched. This, of course is the same for adults, I just happen to be the mother of an 8 year old with a chronic intestinal disorder along with a slew of other illnesses and congenital defects. He was born chronic and is growing up chronic. For us, the reality that we are all in this together despite our differences started while Case was still in my womb. I can vividly remember the faces of other women in the high risk waiting room at a speciality Women's hospital 2 hours from home. Their faces were worn and eyes sad but hopeful. I listened as a mother pleaded with the medical team to let her continue the rest of her pregnancy in peace with out all the high risk inte...

"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...

Here is is! Christmas 2018 give back project is ready to roll! Visit visit the event page for more info! https://www.facebook.com/events/308791043060575/

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...