A Very Special Case.

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...