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...

Our Crainio Journey.  Steep a cup of tea and get comfortable because this is gonna be a long one! I've never really documented Case's journey from diagnosis of Sagittal Craniosynostosis  to the Crainio Vault Remodeling. In part, the struggles of the journey were still fresh in my mind and I wanted to wait awhile for the results of a full scull repair to be apparent.  Let's start in May of 2013. For a while, Case's Geneticist thought he had a suture (every baby is born with small gaps in their scull that close as they grow older) or two that had prematurely fused causing his brain to be crowded and his head to grow wrong. She requested a CT scan and for us to be seen after the scan by the Crainio-Facial clinic at Children's. He was already a patient at the clinic due to his sub-mucus cleft pallet and other Cranio-facial anomalies. The CT scan showed that the top suture on his head was indeed closed meaning Case had Saggital Crainiosynostis. The fir...

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...

He Smiles in the Storm.  When our beautiful, amazing, medically complicated son with an unknown syndrome was born, he was immediately hurled into a storm. We knew he was sick, were told he would die and when he literally started "dying inside of my womb" he was  thrusted out via C-section, taken to the cold, metal exam table in a specialty hospital miles away from our home. Dozens of NICU nurses, doctors and staff crowed around him to "assess" his physical status and told his father we couldn't see him until they "knew what exactly they were dealing with". They allowed me to kiss his face while I was still strapped down to the surgery table and whisked him away.  Once they had him all "suited up" in his isolate for transport via helicopter to Children's, they wheeled him into my room, my husband and I got to touch his little plastic box and say goodbye..... He was born into a storm. He new nothing but the four wall...

"I don't know how you do it!" If I got a nickle for every time I heard that, I could buy.....well, a lot of coffee.... I don't know what "it" is but I can assure you, I don't do it as well as one may think. Some days, I snap. Some days I cry. Most days I can't even function until I've had two cups of coffee. Honestly, with all that could or might go wrong, feel impossible or "not work" in this insane, beautiful, crazy life.....I barely get through the day without a whole bunch of coffee and even more grace. "By His grace we are healed". I take that figuratively. Yes, I believe in total healing of the body but I don't believe we get everything we ask for. I don't know why, but God chose our son to have Special Needs. He chose this family of six to live, to learn, to fail and relearn but most of all He chose to give us grace and grace unending......For every time I fail, for every time I snap at the kids, get grumpy ...

"She is clothed in strength and dignity and laughs without fear of the future." Proverbs 31:25 It's a thing. Laughing, enjoying life without fear, anxiety, worry about the future... I can honestly say, one of the hardest things I've had to do on this crazy journey is slowly teach myself to enjoy life free of fear and it's evil twin anxiety. To rely on God's peace, presence and perfection. I AM clothed in dignity and strength. I CAN laugh without fear of the future, fear of the mail, fear the ever heavy financial burden, fear of ever changing insurance policies, denials and limits.......I can laugh because God's got this. Because His ways are far better than my own.....I can't micro manage this. I don't have a magic wand.....I can't change Social Security's policies, government run health care or the fact that my baby still vomits every day....I've tried and I've failed.....What can I change? What can you change in whatever s...