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...

  "Don't like booboos, no. Don't like no hair. Don't like hospital, no."-Case 3 1/2 and acutely aware of his differences, tired of booboos, tired of hospitals, tired of surgeries, hated having his head shaved for the Cranial Vault Repair......just done and finally able to vocalize it. Two of the hardest things about being the mom of a medically complicated child is hearing how medically complicated your child will be/is and watching your child realize it... For the last few months, he's been noticing he's smaller than normal, he's fed up with constant vomiting and he wants to do all the typical things a three year old can do. He can't tumble due to brain malformations, he can't ride the fun rides at the park due to his abnormally small stature, he can't play contact sports when he grows....and the list goes on. Things he doesn't know he'll never be able to do yet but we'll need to tell him some day. This. Is. ...

Amazing Case.  Long time, no blog....Sorry. Things have been busy, I guess.;) More "normal" than ever.....Case has had a few weeks off from...everything....No therapies....No school....No appointments...Just fun and summer until next week.  He's transitioned from being fed 21 hours a day via feeding pump to, 8 separate, 10 minute feeds through a tube and syringe a day and 8 hour pump feeds at night. HE LOVES BEING FREE, free for his back Panek, free to tumble...free. He's so, amazing....The biggest struggle he's having is daily vomiting. The same vomiting that's been going on for years....I pray for grace....I pray that soon, really soon this will be corrected.  Today, Amazing Case went into a bouncy house for the first time. I was so nervous. Nervous to let my 3 1/2 half year old go in a huge house for bouncing...Not because I'm over protective or a worry wort but because he is fragil. He, not too long ago had his head cut open, movement makes hi...

Dear Case, You are our inspiration. You make us stronger. You've touched tens of thousands of people with your strength. Because of you, mommies are stronger when they have babies in the NICU. Because of you, grown ups decide to better manage their diabetes and stop sweating the small stuff. They see something beautiful. They see Jesus in you and want to be more like Him. You won't understand till you're older but you've shown me that perfect is an illusion. That different isn't defective. Different is beautiful. You don't know this either but, you've been though hell. You've been through more in you're tiny, 3 year life than 10 grown ups put together and you, my beautiful boy have done it all with a smile. I will never be able to thank you enough for being so special, for making our lives brighter. As you age, I see you understand more. You know what's happening soon.....that you're going to the hospital again. That they are going to cu...

"Your grace abounds in deepest waters Your sovereign hand will be my guide Where feet may fail and fear surrounds me You've never failed, and You won't start now" Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger....... Before the birth of our son all Chil...

So, I usually do all of Case's updates on his facebook page. If you don't follow him on facebook, click here. I'm going to TRY hard to update the best I can on here too for those of you that don't have a facebook account but for now, please pray for the important things going on at the end of this month.:) On April 28th (Monday) I'll be admitted to Children's for a procedure Tuesday morning. They will place a catheter into my brain to measure ... the pressures in my head. I will stay in the PICU (Pediatric Intensive Care Unit) while they do this. On Thursday, they will take the catheter out, do an another MRI (I just had my 3rd in December) and decide if I need a Cranio Vault Repair (an invasive and intense surgery where they will completely reconstruct my scull-*and my forehead, etc.) It's all a bit overwhelming but we know that God has great plans! We will be fine either way....If Case gets the surgery, it could really increase his quality of life an...

Rise Above Your Circumstances.  I've heard that phrase 100 times and never gave it a second thought... Until last night. Rise ABOVE your circumstances.  It's been a long month (I think I say that every month) with "normal" SN issues, 3 long days full of appointments, blood work and tests at Children's, long car rides, and you know, raising four children.... I'm not telling you all this to complain, I'm telling you this because it was last night, while I was tossing and Turing that I heard it "Rise above your circumstances." Rise above the issues, the system, the chaos, the pain, the fears that this will never be easier and BE AT PEACE. That's what's crazy about peace, we can have it admist the war. Tucked deep, down in our heart. We can feel it in the PICU and when our son's case workers won't won't call us back. We can feel it when we're tired, sad and happy.....  You see, life is not going to get easier. T...

Don't give up....Let go.... Sometimes I want to give up. I'm so tired, not strong enough, brave enough or organized enough to be the mom of a miracle. It's a privilege and a challenge wrapped in paper work, headaches and messes.....Beautiful messes.  Then I hear it....a soft, sweet voice... "Don't give up. Let it go." "Just let go.....Know your children are mine. I've lent them to you.....To parent not perfect. Perfection is a delusion." When it takes everything I have not to throw in the towel I remember, I don't have to white knuckle my problems (and trust me, it's problems I've got.....). I can let them go. Be broken and remade. "I don't want to be rescued....I want to be redeemed"......Scary thought, right? "I don't want to be RESCUED , I want to be REDEMED !" *"redeemed":  to make (something that is bad, unpleasant, etc.) better or more acceptable.  Being rescued would be...

Blessings are all around us but our vision is clouded by the trouble that is everywhere. Everyday something or 400 things go wrong, don't go as planned or turn into mini (or major) disasters. There is trouble in this world and I, have seen a lot of it first hand. Troubles come with the beautiful blessing of being the full time care taker of a special needs child. The troubles of insurance companies, sickness, un-ending paper work, hospital stays, sleepless nights, no light at the end of the tunnel.....and on and on.....It is so easy to have constant focus on our trouble to the point of creating troubles in our mind that DON'T exist. I can easily and with out even realizing it worry my way into scenarios that won't ever happen....It is at that point that I can be in charge of my thoughts. I can see how blessed this journey really is! I have to consciously change my train of thought to trust and thankfulness (a friend of mine calls it a stop thought: stop the toxic, wort...