A Very Special Case.

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.....

"I am trying to understand How to walk this weary land Make straight the paths that crookedly lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine" I've been traveling a crooked path and all I see I one step ahead. This land can be weary but blessed. I am overwhelmed with the amount of blessings Case and his story bring, spiritually and monetarily. As I was speaking to his Genetic Councilor today (yeah, we chat on the phone, lol) I started thinking about what a special Case we really have. Noone, not one of his doctors, nurses or therapists have ever met a child just like Case. He's complicated and so far, un-figured out. It's been a long, exhausting journey and its only just beginning. But for every complication Case has received a hundred blessings. He was sent to us to show us how precious life is. He's opened my eyes to a huge, beautiful world of people who have hearts of gold and love that reaches far beyond their 4 walled home...

Being a mom is tiring. Being a mom of four, with an overworked husband and a special needs, medically complex child is beyond exhausting. You have days of weariness before you even realize how weary you are. You fill out piles of paper work, call an endless amount of doctors, hold puke rags, give meds, order supplies and the list goes on. You thank God for your blessings but sometimes wonder if he has you mistaken for someone else, someone stronger. As you walk this weary land you gain strength, just before you break. You learn that "me time" is vital to your health even if it means locking yourself in the bathroom. You seek out others who get it, who also walk this weary land. You are dumbfounded by the out poor of love and kindness sometimes by people you've never met. You savor the cuddly moments, silly dances and coffee from friends. You try (hard) to take it moment by moment and tackle the problems and not focus on all the "what ifs". Sometimes you feel lik...

"So hold me. When You're here ill never be lonely. You're my favorite part of this story. So, sing it again and again.." I woke up with those song lyrics in my head Tuesday morning during Case's inpatient stay at Children's. Case had his tethered cord release surgery on Monday and is doing great! We stayed at Children's until yesterday. I'm stayed in his room with him and had a peaceful stay. The hardest part was when Case reached his hands up and from laying flat in his hospital crib and said, "wanna ge owwwww" (want to get out). He had to lay flat for 48 hours. He's amazing and special for a very apparent reason. Hospital stays, needles, doctors and medications have become a part of his life so much that it's his norm and he walks down the halls like he owns the place. I've felt a particular amount of joy and peace this time around. I belong too. Being a special mom is who I am and runs deep in my blood. I talk in medical term...

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...

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and  Dr. Ruldolph   (GI Dr.) mentioned the possibility of giving Case GJ tube. "A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department. GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)." This tube would stay in his body most the time. If the tube got pulled out we would go ...

Since Case was born we've spent countless hours in rocking chairs. First it was the rocking chairs in the NICU then the ones in the step down unit  (if you can even call them "rocking" chairs. They were more like "slightly moving, cushioned chairs".:) and now it's the two rockers in my home. I love rocking this boy. He's so soft and cuddly. I love his smell and his sweet voice when he babbles but one of my favorite things about rocking him is listening to the songs that play on my phone. Since those early days at the NICU I played songs while I held him. Lately, I've been playing a "radio" on my phone. I quietly pray, listen and cuddle. I treasure these times and have them often. Since we got home from our last trip to Children's Case had some of the hardest days feeding wise. The volume was just too high. The retching got violent and frequent and was often followed by some vomit which meant lots of cuddles and rocking sessions. After ...