A Very Special Case.

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 products,

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 and mo

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

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....are you ready for it?! Each year Case for Case's birthday (December 21at) and Christmas we try to do a great big "give back" project for the Children's Hospital of Pittsburgh. We team with Rooting for Ramsey and have collected everything from toys to ornaments. This year we are collecting non perishable foods for the family pantries! Each unit has a little kitchen with cupped that are often scarce. There is such a need for quick and easy snacks that will fill families up when they are low on time and or money. We will be collecting food from now until December 21st! We will be providing a list of food, an address to send the food to and flyer to share with your friends and family! Thank you for always supporting Case and for helping us give back to the hospital that gives us continual hope!

Sometimes, we are stuck in situations we can’t control. Sometimes, the ONLY thing we CAN control is our attitude. Sometimes, those situations are so sucky that the world gives us PERMISSION to feel sorry for ourselves and we do. I do. I was sitting by my son’s hospital bed during admission number 4 million and was throwing a little pity party for myself....It was Friday. My son was admitted the night before and we were looking at about a week behind these four walls. We had plans for the weekend. Plans to get away for for a few hours, my husband and I. We were going to spend time together, eat our favorite food and celebrate his birthday. All these plans changed  quickly and were replaced with needles, IV fluids and hospital gowns. So, I did what I normally do and pouted a bit. I thought, “of course this happened! We had something planned and every time I plan something fun for myself, it doesn’t go like I imagined” and on and on my pity part went. In the thick of my internal whine fes

Let’s talk about self care. If you are anything like I used to be, that very combo of those two words in that order make you want to throw up on your shoes. You are probably thinking, “Are you kidding me? She wants me to take care of myself? When??? How?? Does she really think I have the ability (time, money, energy) to do anything above the required semi-weekly shower and pee when my bladder is about to explode. Cause I don’t. I can’t take care of me because I need to take care of everyone else! Including (for a lot of us) a very needy, child with SO MANY extra needs!!” When I say, “I get it” I’m telling you the god, honest truth because I was there and still have off days. You see, for a LIVING I tell other parents to take time for them. I run whole support groups on self care and why it’s so important. I’ve been doing this for years....All the while I was so neglectful of my own needs that I ate donuts like they were going out of style, would get so tired I’d fall asleep on m

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 breath, I will tirele