A Very Special Case.

  You are good enough.  Hey, you....Yeah you, the mom with regret written all over your face.  You are good enough. You are strong enough. You are pretty enough. You are doing a good job. At the end of the day, when you're laying in bed and through your brain is running all the things you've done wrong. You're thinking about your unorganized sock drawers and dirty toilets. You're thinking about the home work you forgot to sign last week resulting in your daughter getting a "warning" (in other words, her mom sucks and she suffers)...About all the things you could have and should have done but didn't have the time, the energy, the brain space or the strength....  At that moment remember how loved you are. How forgiven you are. How you, yeah you were made in Christ's image and you are a child of the one true King. Don't listen to the voice that tells you otherwise. With all that you are and all that you have, believe that you indeed ARE good...

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” —Matthew 6:34    Dear worry, I'm over you. You exhaust me. I'm tired of your constant need for attention. You started to push your presence hard into by being over three years ago when I heard words like, "Prepare yourself to bury your son" and "I just don't know what to tell you....your child was just made wrong...". It was then you started whispering no, shouting, "NOTHING IS EVER GOING TO BE OKAY. Don't you see, the Dr.s don't even think your baby has a chance!" Well worry, you were wrong. My baby is a fighter and my God is sovereign. He doesn't make my life perfect because perfect is boring and perfect requires no dependence on Him. You, worry, are getting old and I'm breaking up with you. Don't tag along when the Drs give my son his 30th diagnosis. I don't need you when I open hospital bi...

  Being the mom to a special needs, medically fragile miracle is like walking through the woods with a blind fold on. Most of his doctors are right beside you...blindfolds on too. Helping you find your way and making this place a safe home for your child. Other doctors ran away when they were handed a blindfold..."It's just too much. Too complicated.....too scary" they'll say. "Good luck!" They'll say and run away... Then there are the other miracle momma's walking behind you. Some have special angles and have been forced to do what you fear most, bury their miracle. Still, behind you they'll stay because together you are a community. You need each other and aren't afraid of a little blindfold... Sometimes you'll feel lost, bruised and broken...but you'll keep walking...As you walk through the dark, scary woods, you'll hold tight the hand of your child and in your other hand is a machete, cutting down the obstacles in your wa...

Dear beautiful child without a voice, I will be your voice. I will not back down, I will not give up, until my last breath...I will fight for you. I will not let a man in a suit, behind a desk tell me what is "medically necessary" for you. He has not cried for you, slept in a chair in the hospital for you or fought for you. He does not know your pain nor has he seen your strength and with all due respect, I don't think he'd care to but I have...and I will continue to because i love you with every fiber of my being. For the rest of my life I will fight for your needs to be met because the sad reality is that children as special as you don't always get treated as the kings and queens that they are. It's true, dear boy and that's why they were given mommies like yours. To be their voice, to fight for meds and treatments and beds....Don't worry sweet prince, I will do all that I can for as long as I can so that your sweet, soft voice can be heard. Ev...

One of Case's fans asked a few days ago about what my biggest fear for Case's future is. Honestly, I don't think about it much. I've tried since pre-birth to take one day at a time but I know what it is. My biggest fear for my medically complex, special needs son is that he will feel left out, "defective". I will always be beside him, cheering him on...Telling him that different isn't defective. Different is beautiful!!  Dear beautiful baby, After you were born, God broke the mold. No, really. There is no one else like you, anywhere. You were made different. Yeah, different but that's a GOOD thing. You are not weird or odd.  In fact, your differences make you even more beautiful than I ever could have imagined. Not only on the outside but on the inside too. When God put you together he placed your parts with great care and made them super special, kind of like Spider-Man's web shooting wrists and Superman's extra strong arms...You ...

Almost 3 years ago my life changed. I stepped into a world that was no longer comfortable. A world that can't be fixed by a prayer. Where asking for healing doesn't always mean the pain or the sickness goes away....It was in September, 2010 when I saw a perfectly beautiful unborn baby full of deformities and disease before he even took his first breath. I was told over and over and over again that my perfect baby was made wrong. That the child inside of me was deformed and incomparable with life...(I hate those words "incompatible with life", they make my stomach turn...I don't think they should be formed into a sentence....If a child is born alive then that alone is a child "compatible" with life.....Right?!) During the days leading up to the birth of Case I belonged to a "high risk pregnancy" board online. I read a post of a young mother who aborted her daughter because the Dr.s told her of the horrible things this girl was up against.....

Yesterday I needed to get my picture taken for my drivers licensee and when I looked down at my old license, I saw a young girl who decided she would hold onto her organs when she went on to heaven....... 4 years ago I was living in a different world. A would where The Children's hospital was just another hospital I've heard of and backpacks were for books. 4 years ago I had 3 healthy babies and terminal sickness was something I rarely thought about. 4 years ago when I got my last drivers license picture, I opted out of organ donation because I didn't want my organs "eyed up" and I didn't know I'd ever be living in a world that children die waiting for the gift of life. 4 years ago, I never dreamed I'd love a short, one kidneyed, webbed toes little man with all of my heart and someday, when I do pass I will leave my organs behind and I encourage you to too. Because, some day in 4 years or 14 it could be your loved one dying for the gift of life. ...