A Very Special Case.

You tell me, life will not always be pain free.... *but* You are stronger Than any terrible possible scenario today Come and save me -Song lyrics that ring true to me.  The life that is led by the mommy of a special needs child is not always pain free. It's the *not letting pain lead to suffering* (because He is stronger then any possible scenario that has ever been thrown at me) that keeps me going. And, oh, have we heard EVERY possible scenario.  He has saved me from the suffering. Saved me from overwhelming worry. Saved me from being taken down by these anomalies. Syndrome or no syndrome, big or small, sick or well, Case is exactly the child God desires him to be. We are not being punished but rather rewarded and made stronger by the blessing that he is and his special journey. Galatians 6:9   Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.  

Case has his second surgery this Friday. This surgery is completely unrelated to the last. It will be the first of possibly 3 total surgeries to fix his severe hypospadias and other issues with his boy parts. It will require at least one night stay in the hospital. Although this has been scheduled for months, it feels like it has snuck up on me a bit. Time is flying, I must be having fun! Really, I am not nervous or scared but when I think of it I get butterflies. Maybe it's the fact that I'm not sure if it will be one, two or all three procedures and will not know until the surgeon calls out to the waiting room to tell us. I won't know how long he will be under until then. Maybe it's the fact that I'm excited (weird, I know) but I'm actually looking forward to it. Children's and the Ronald McDonald House have been our second home and I'm looking forward to going back. I'm praying for a quick recovery and hoping the pain is manageable. After all, I h...

Tonight while I was rocking sweet Case I was thinking about his feeding issues. He maybe takes a few bites and and ounce on a really good day and by day, I mean 24 hours. I was really wanting him to eat again. While I am thankful for the tube, I desire a bit of normalcy when it comes to food. As I rocked Case I spoke to him, to his belly specifically and told it to empty, to grow, to be hungry again. Sounds little silly, I know but when I was pregnant, I would put my hand on my belly and speak healing to every part of Case's body. It worked for his heart and maybe for some other issues. I would end those prayers something like this, "Jesus, these are the desires of my heart but above all I desire your will to be done." That was a scary prayer to pray. I gave this baby to Jesus. I find myself  (sometimes daily) giving Case to Jesus. Every time I worry, every time I fear, I take him back. Then out of my peace-less-ness, I realize I need to give him back.;) Tonight while I ...

I used to joke about being a Martha. You know, in the Bible where Jesus was visiting Mary and Martha. Martha was running around the house, crazy busy and Mary was sitting at Jesus' feet. Martha was irritated that Mary was sitting while Martha was busy getting things done for Jesus. Martha complained to Jesus and he said,  “Martha, Martha, you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.” I used to be busy. Too busy. Case is helping  me become a Mary. I stop all the time and smile while strangers admire him. I've spent hours waiting in waiting rooms and doctors offices. But most of my "Mary time" (the quite time of worship and prayer) is often spent sitting holding or rocking him while there is "much to do". Dishes and dusting can be done in the morning. Case and the girls are much more important. Being the mother of a very special boy has helped...

When I feel surrounded by troubles. When I feel weak. When I'm too tired and  too over whelmed to take on my responsibilities, I readjust my focus. I am not strong enough. He is. When I am sad. He is joy. When i am troubled, He is peace. He made Case in His image. He made him my son. The only way I can get through life with out losing my mind over small and big problems his to focus on Him. I read a short devotional today and this part really stuck out: "You will not find lasting peace in the world around you, in circumstances or in human relationships. The external world is always in flux-under the curse pf death and decay. But there is a gold mind of peace within you waiting to be taped. Take time to delve into My resting presence." So to answer the question I've heard a thousand times, "How do you do it? How are you not overwhelmed?" That is how. I "tap into His gold mind of peace." Colossians 3: 15 Let the peace of Christ rule in your hear...

When Case was tiny and in the NICU I knew that if he didn't eat and grow he would get a G-tube placed. I was relieved that he was sent home tube free. I don't know why the G-tube made me uneasy back then but it did. Maybe it was the unknown of it all. Well, at age 11 months we bit the bullet and he got the dreaded tube. After 11 months of forcing, begging and pleading with him I stopped fighting the inevitable and buckled up for the G-tube journey. I have to say, I am very thankful for it. Without it Case wasn't thriving enough.  He was loosing weight and looking sickly. He now is gaining around a pound a month and has filled out nicely. The G-tube is a wonderful gift that has enhanced his life. That's the good. The bad is that what he eats by mouth has dropped significantly. It's almost like he knows the eating by mouth is hard work for him. He'd rather just sit and be fed through his trusty tube Also, with feeds as frequent as they are he is rarely hungry...

For as far back as I can remember I wanted to be a mom. When our first child, Meredith was born I finally understood the undeniable overflowing love that fills your heart when your baby is placed in your arms for the first time. I love everything about motherhood. From pregnancy to the fist day of school. Sure, cleaning up vomit and hold hands (and entire tiny bodies) during shots aren't the most comfortable experiences in the world but they are part of my job. My wonderful, beautiful job and I wouldn't trade a second of it. Even though it took days before I held Case I still felt that overwhelming rush of love the minute I heard his beautiful cry. When they pulled him out of my belly we were uncertain of his future. I didn't know if we would bring him home from the hospital. I wasn't sure if Dan would ever teach him how to ride a bike or if he would ever help me bake cookies. All we knew was that we wouldn't take one second of his life for granted. The same concept...

In case you missed it...Here is our Very Special Super-Star! Watch Case and his mommy's interview at their home.:) Watch Case, his mommy and his daddy on the show! As you read in one of my previous blogs you read that Case and I would be on Central PA Live yesterday evening. If you missed it, you can watch it on the website. It was a blast!

Case absolutely LOVES drumming. It is too cute. Enjoy...

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 ...

"I wouldn't change him, even in my hardest moments. I'm so thankful for him just because of all the love he has brought," Liz said. "He's considered disabled, but I think he's perfect. I wouldn't change him because he's just so cool." Yep. That's me. I said that and it's true, "he's just so cool!". Our family is in an article in a local magazine called, Mirror Moms. I was contacted a few weeks ago and did an over the phone interview with a lady named Kristy. The article is called, " Ronald McDonald House helps families with sick children". You can read the article  here .  I speak briefly of Case and our time at the RMH. I was also contacted by a lady named Dawn, from a local t.v. show called "Central PA live." She asked if I would like to be on the show, I said I would love to. Her and her camera man came to our house this past Monday. I did an interview while he recorded and then he video taped ou...