The Spirit of Madilyn....

Let me share my thoughts with each of you on this somber evening. I have read your blogs and the post by Kari about a decision that another Mother is facing. I have felt all the frustration and sorrow and pain that you all have shared.

My situation was completely different when I was pregnant with our sweet Madilyn. For some unexplainable reason, other than a miracle, we had no idea that anything was wrong with our growing baby girl.

On March 26th 2004, I was taken into the OR for my third C-Section. As we entered that room I felt a strong presence there. It is almost hard to explain. The room was filled with light and warmth and peace. Stronger than I had ever felt before in my life. I knew that my Heavenly Father above was aware of me at that moment. I believe that angels were abiding with us that day.

Madilyn's entrance into the world was peaceful. Her sweet cry was beautiful. She was wrapped in the arms of love. Her spirit was so strong that it overwhelmed me. Tears flowed and I couldn't stop them. These were tears of joy. Joy at being blessed with the gift of Madilyn.

I was not prepared for what happened next. I had no time to think about it. I had to act and make decisions to keep Madilyn alive. As parents we became her biggest advocates. Her life was our responsibility. Our daughter was born with Spina Bifida that had not shown up on any ultrasounds or tests prior to her birth.

The odds were against us that day. But, I believed in the remarkable spirit of Madilyn. I also believed in my Father above and his plan for our family.

Today, Madilyn is a healthy and happy six year old. She completes our family. Spina Bifida does affect our daily life as in the routines we have. But, it does not define Madilyn. A few weeks ago she walked and ran 2 miles in a fun run at her school after she was confined to her wheelchair just a year earlier. Yes, her bowels don't work and we have a MACE to help them out, her bladder has to be cathed, she has developed Lymphedema in her right leg, she often brakes her right foot and has no idea how she has done it, she doesn't sleep well sometimes, she visits the hospital often and has lots of doctors who care for her. I could go on but I will stop there.

The flip side is she is brilliant. She has a smile that will melt your heart. She loves school and is doing well. She is challenged by handwriting and spelling but can read like a professional. She loves to play dress up and barbies. For Halloween, she is going to be a "Pirate" complete with a parrot to sit on her shoulder.

During this time of "Spina Bifida Awareness", I want people to be aware of what it means to me to be Madilyn's Mom. It means everything. She challenges me to live better each day. As a family...we laugh, we play, we cry sometimes but we live the best life possible!