A Very Special Case.

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...

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 ...

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...

It's okay not to be okay.  You: "How are you?" Internal me: "I might burst into tears.... It's been a rough week and it's only Wednesday. I've caught vomit, stuck a needle into a port, tracked a fever, spilled meds, hooked up IV fluids, made 600 phone calls, worked till 5 each day, tried to cook diner and straighten the house. I've fallen asleep waiting for the night nurse to come when I know there is so much more to do.... All the while, I've tried desperately to make sure my three other children felt as loved and "normal" as possible... Do you really want to know how I'm doing? I mean....REALLY? Will you give me "advice"? Will you tell me how "strong" I am? Will you say, I don't know how you do it? OR will you just look at me with a blank stare because, really you thought I would just say..."I'm okay."? I give you a smile and say, "Good. I'm good, you?" Now that I'm ...