A Very Special Case.

After the birth of sweet Case a lady from our insurance company called and told me "Because of all your baby's problems he is probably considered disabled." She was right. According to the state Case is indeed disabled. I remember the first time she told me that. I was standing outside of the NICU wondering why I was wasting my precious cell phone minutes talking to this lady. Disabled? Really? How can a baby even BE disabled. A war veteran or a woman who lost her leg in a biking accident yeah, it makes sense that those people are considered  disabled but my sweet, new, precious baby did not seem disabled to me. Once I got over the fear and faced the reality of raising a "disabled" child I realized what a blessing it is to be his mom. He may be disabled but he had never let that define him. His ABILITIES out weigh his DISABILITIES. He is able. He is able to have peace in the midst of chaos. He is able to overcome obstacles. He is able to love when most would hat...

Yesterday was Case's Nephrology appointment in the Children's Care Clinic. We met a new Dr. He was great, thorough and gentle. He had a genuine concern for Case and took lots of time talking with us. Case's good kidney looks good (there are small pockets of fluid but this is fine for now). His bad kidney is very clearly not functioning and very slowly shrinking. The Dr. asked if he has dwarfism. If I had a dollar for every time I got asked that question, I'd be going to Disney Wold. Case does not have dwarfism. He had a skeletal ex-ray while in the NICU. It came back normal. The dr. was concerned with his Sacral Dimple. He thinks he has a tethered cord  and Spina Bifida Occulta . This is not the first time these conditions have been mentioned. He wants an MRI in the future. Because Case is so young, he will have to be knocked out for the MRI. I will update you all when a date is made. The doctor was concerned with his size and feeding struggles (as all his doctors ar...

I have a confession. I'm tired of fighting the food battle. For all of the 17 months Case has been alive, I've been fighting my butt off to get this child to eat right and grow well. The food battle started as soon as Case was born. They whisked him away from me via helicopter (even though we were only minutes away in Magee Women's Hospital) to Pittsburgh Children's Hospital. Once he was gone, the food battle started. I pumped around the clock every three hours to have milk for the time when they allowed me to nourish his tiny body with bottles then with breast. If only it would have been that easy. He was about a week old when they first let him eat, after a day or so they stuck a tube down his nose. Eventually they let me try to nurse. He was too weak. Once he was sent home, they took the tube out of his nose and I was feeding him fortified breast milk every 3 hours (around the clock). I was also pumping. This went on until I could no longer keep my milk (around 3 m...

Happy is as Happy Chooses. A week or so ago, on our way to the bus stop I was having a discussion with one of my daughters about choices. She was in a grumpy funk and had as I call it "the Eeyore Syndrome.” The Eeyore Syndrome is a made up syndrome that means no matter your surroundings, you are grumpy. "Ho, hum. Nobody cares about me. My life sucks. It's too hot. It's too cold. Nobody loves me…." This particular little girl in our home was just plain grumpy no matter what was going on. She was so grumpy that week that I am pretty sure even if we were in Disney World she would have found something to complain about. As we walked the two block walk to the bus that morning, I told her I could not make everything perfect and neither could she, but what she could do was CHOOSE joy. Regardless of how crappy she felt her life was, she had the power to choose real, true joy. I immediately thought of sweet Case. He is FULL of joy. He is blessed with peace. At his y...

A few days ago I decided to take Case to Walmart. I needed to exchange something that broke and wanted him to pick out a couple of presents for his two main home nurses (in case you didn't know, it's nurse's week:). When we got to customer service, they gave me a hard time. They told me their computer said they had no record of the flawed product, and it hasn't been bought in at least 6 months (not true, I bought it 2 1/2 months ago). They said I was out of luck because I didn't have a receipt. I was so annoyed and frustrated. I was out $20, and they didn't care. As I headed to the back of the store, I remembered a time during my pregnancy with Case when things looked grim. A time when if Case lived, he would be plagued with serious physical and chromosomal issues (or so man thought). During this time I made a deal with God. I promised Him that if he made Case whole and gave him the grace to live a full life, I would stop letting little things brother me. I woul...

With mother's day soon approaching I thought I'd blog about all you special mommies! Definition of MOTHER 1 a : a female parent b (1) : a woman in authority; specifically : the superior of a religious community of women (2) : an old or elderly woman 2 : source , origin <necessity is the mother of invention> 3 : maternal tenderness or affection 4 : something that is an extreme or ultimate example of its kind especially in terms of scale <the mother of all construction projects> but a mother is so much more. If I were Webster this would be my definition:  Mother:  1. A women who holds her pee, ignores her hunger and rarely brushes her hair in order to meet all of her children's needs twice over before her own.  2. A women who has felt a love in a very deep and different way then ever before.  3. A woman who would indeed die for her children but instead lives in a way she hopes will inspire them.  4....