A Very Special Case.

Dear Case Daniel McNulty, Today you woke up FOUR! Wow! That's 4 more years than you were promised. Four more years than we were told to expect! Four years full of kisses and chaos! Baby, you have come so far! You have proven so many wrong. You fought for every year! I am SO proud of you! I've watched every tear fall from your eyes and held your tiny hand through every needle, every test, every sonogram, every hospital stay.  Daddy and I can't imagine life without your contagious smile and your energetic hugs. Your life will be different than the other preschoolers. It's full of tubes and pumps, medicine and Dr visits but we know four is full of promises. The promise of strength for the journey. Grace in abundance and the promise from Jesus that he will never leave you or forsake you.  Nobody ever promised it would be easy but I promise you, it's worth it!!! Love, mom.  Birth  First birthday  Second birthday  Third birth...

Dear Case,  Four years ago today, they told us to prepare your burial. They told us the worst. You were still inside. I could feel you. I knew you weren't well, weren't growing, couldn't survive a natural birth..... and I loved you. I loved you with every fiber of my being. I knew you belonged to God and I begged him to let you live. To give daddy and me the chance to raise you, watch you grow. I couldn't think of the future because I couldn't bear a future with out you. I wanted to see your first steps, hear your first words, let you pick out a dog that needed loving. You are a gift that keeps on giving. You may grow different, eat different, hit milestones different and live behind hospital walls sometimes, but you are perfect just the way you are. We thank God everyday that he loaned you to us, every perfect-imperfect part of you. Today, as emotions tug at my heart and visions of that horrifying day four years ago flash through my head, I thank God for hi...

When I first found out I was pregnant with my fourth child, I was elated! I miscarried our third child. A few years later we had Lainey and we really wanted one more. So many thoughts ran through my mind....."What if the baby is our only BOY?! What if we have a fourth, precious girl? What if I miscary again?....That would be so hard.....I wonder how big he/she will be, who they will look like and what their future holds...." Never once did I think, "I wonder if my child will be chronically ill and qualify for Make a Wish". There were a lot of things that never crossed my mind concerning my unborn child. Atleast not untill my 25 week sonogram with a high risk doctor.  Spnething thing I did realize while on this journey is you can't imagine the grief you'll experience at times. Equally, you can't imagine the joy that comes along the ride..... Our precious, complicated, strong boy, Case was picked to Make a Wish. Through all of the hards, the bads, the boob...

  It's true, through the darkness and the trials. At the hospital and home, He will be with me always because I am loved and I am valued. In a world of medical. When it seems all I do is make phone calls, shuffle paper work and travel to specialists because my child is special, it's easy to lose myself. My mind frequently spins with the last medical info or the dread of the upcoming test/hospital stay/procedure.  It's a burden that is heavy and constantly reminds me that there is no end in sight....but then I remember, I am loved. I am valued and I matter. I remember when I carried my miracle who's insides and outsides were being formed intricately and uniquely He was whispering His promises into my heart. That this is a beautiful, blessed and different journey. That we'll always and forever be okay because even though our future is uncertain He will always have His arms wrapped tight around us. He's always close by to hand the ever looming anxiety and fear...

"You make beautiful things. You make beautiful things out of dust. You make beautiful things. You make beautiful things out of us. You make me new. You are making me new." Case is a beautiful thing. Through him we are becoming "new". A new mom and dad doing things and going places we never thought we would. During the nightmare that was my pregnancy with Case one of the million OBs I'd see used to say his "computer programming is messed up. When your baby's computer program was put together it was put together wrong." Yesterday at the Genetics appointment they talked of how baffled they are by Case. "We've just never had a case quite like his. We know there is a reason behind all of his differences/issues we just don't know what.  We are at a point where we've tested most everything we think it could be." We spent hours with the Geneticist, Genetic councilor and a student studying Genetics (they brought her in because "C...