A Very Special Case.

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...

As some of you know our life is about change. In 7 days we are picking our 4 children and life up and moving it an hour away. Dan got a job offer back in October and took it. It took 3 months to find a buyer for our house (we had to sell before we bought) but now we are only 7 days away from a whole lot of change. Good change, sad change and a little bit of scary change. We leave our dear, feels like a grandma nurse that has been with Case for a year. We lose the pediatrician that I've grown to love, trust and call all hours of the day. We leave all four of our sweet, dedicated, hard working therapists and well just a lot of special people. Thank God we don't lose our Children's hospital! As a child, I struggled with change. If I couldn't find my pillow or someone else was sitting at my seat at the table, my whole day/night was thrown out of whack. Well, these past 26 months have been nothing but change and I'm still not used to it!:) I know that change is good....

If I could go outside of myself, hug myself and tell myself one thing, it would be that's it's going to be okay. I've never met a mom of a child just like Case. I've never had anyone say that they know exactly what I'm going through or what my future holds but some nights I wish I did. Tonight, all of a sudden Case felt hot. I took his temp and it was 103. Because of his kidney problems, this could potentially be a big deal. I'm suppose to call his pediatrician anytime he has a temp over 102. So, of course I called right away and if Tylenol didn't work I was suppose to rush him to the ER. This started to get to me. I started to think that maybe I'm not cut out for this. At the drop of a hat our lives could change. There's no guarantee that anything will ever be normal or easy. If I could jump outside of myself on nights like this and give myself a hug the one thing I would say is that it's going to be okay. That I am strong enough for this. Th...

To my two oldest daughters. Meredith Rae and Samantha Lynn. This is what I would tell you if I could text you after you got on the bus in the morning...I'm sorry you had to run to catch it. I'm sorry you almost miss it 3 out of 5 days a week. Thanks for being patient with me while I try to split my time and energy a million ways. I'm sorry I can't chaperone your field trips and volunteer at your schools much now that your brother doesn't have day nursing hours. Thanks for stepping up. For helping out. For being wise beyond your years. Thanks for understanding and loving our "dates" even if they are usually just to the grocery store. Thanks for not minding too much when your homework helper is distracted by a beeping pump, vomit and important phone calls. Thanks for growing in wisdom and understanding that different isn't defective, different is beautiful. I wish you could stay home from school and cuddle me all day like Lainey but I know that school ...

Dear Husband who stuck around, To you. The one I pledged my love to almost 9 years ago. You are pretty special. You're still here. After all we've been though. For better or worse and lately things have been worse more than better. Thanks for sticking around when most would have run away. Thanks for embracing the "special needs dad" role like it's what you were born to be. Thanks for defying the odds and preventing our marriage from becoming a "statistic". Thanks for watching all four kids (even the one with the beeping feed pump and leaky drain tube) so I can get out before I go nuts. Thanks for loving me even when I've already gone there (nuts). You're admirable. You're the hardest worker I know. Thanks for working SO hard that you've made it possible for me to be here, home (it's where my heart is). Thanks for wiping my tears, being my soft place to fall and showing me even the strongest of souls cry. Thanks for telling me I'...

So, as you all know I love this very special Case of mine. It's obvious that from the tip of his tiny little webbed toes to the top of his (slightly large for his body) head he is FULL of special. For all 20 months of his far from normal life he has touched, blessed and loved more people than I could ever count. As he walked around the restaurant we ate dinner at last night, it was almost as if he sprinkled joy all around him. Every one he came in contact with smiled at him. He was awed over and adored. Yeah, he's cute. I'll be the first to tell you that but it's more than his adorable little body that has people go out of their way to meet this tiny star. It's his pure soul and his ability to love without discrimination. I didn't realize how easily I judged people by their appearances until my tiny teacher came along. Just the other day this crazy looking dirty man with a lazy eye came over to the fence around the play ground Case and I were playing at. I immed...

This life that I'm living is my story. It was written before I was born. A beautiful story full of tears and smiles, exhaustion and energy. I'm not in control of most of my story, just how I choose to "be." I want to be a character full of grace. I want people to think of my story and smile, but mostly I want to make my maker proud. Some days feel like they'll never end.  I feel like I'm in over my head with paper work, phone calls, and children, but when I close my eyes at night, I'm certain this is the perfect story for me. This past Tuesday I was having a "blah" day. I was discouraged in the fact that it seems like lately when we get one of Case's problems under control 2 more rise up. It's like taking one step forward and two steps back. When I got the mail that day there was a small box with a simple bracelet from a dear friend. You see, my birthday is tomorrow and she got me a gift but what she didn't know is that it would co...

Once Case was born and his health problems were addressed, the only thing keeping him at Children's was how little he weighed. A couple friends of mine (husband and wife) used to say, "Grow, Case! Grow!". Throughout his life that kind of became his chant. Lots of people say this to him often. Like I said before, having the tube in his belly didn't produce the results I expected at first. His gain was slow and he even had a loss since he came home from surgery. This week though, he gained 6 ounces bringing him up to 11 pounds 13 ounces. Awesome!! Getting him to eat enough has been a struggle his whole life. I've had to give this to God over and over. For three months I begged Case to nurse. I pumped, stored and fortified my breast milk until I couldn't any more. The whole time desperately trying to get Case to nurse. He would latch on sometimes and suck a little. But doing that too often would wear him out and cause poor weight gain. Eventually he wouldn't ...