Tuesday, February 21, 2012

Where does strength come from?

Today I sit here in my home waiting to here when my nephew will make his grand enterence in the world. My sister Kathy and my wonderful husband Dylan are having their fourth child, Ryan Dylan. I am filled with such love and happiness for them. They are a beautiful family and deserve such joy. It brings back many feelings for me. On March 29, 2002. I was in the same place, same hospital. I was in labor with my first child. So many hopes and dreams. I didn't know what the future would become but I knew I wanted to be a mother so deeply. I can remember the day so intensely. Grace was born around 3pm, Good Friday. Michael and I were overwhelmed when we heard her scream and knew our baby girl, Grace Catherine, was ours forever. The doctor was concerned about some blisters and skin that was missing from various places on her body. It seemed to be getting worse. Our emotions immediately turned to fear. The love you have for your child is so intense, you really can't put it into words. 3 hours later, the doctor told us they were going to transport Grace to the university hospital because they were better equipped to take care of her. No word what was going on just alot of questions. I was still so numb from the epidermal that the nurses had to wheel me into the nursery to say goodby to my baby. This was unreal and so heartbreaking. Michael went with Grace, while I had to stay back. That night Grace was observed and poked and prodded so much. I was discharged the next morning and Michael brought me to the the hospital to see her. She was in the NICU. Grace had lots of dressings on and she was hooked up to a IV. The doctors still had no clue what was going on. It was days later that they sat us don and told us it was one of 2 things. Scolded Skin Syndrome or Epidermolysis Bullosa. My mom knew it was the second. Somehow moms always know! We were confused and frightened. My mom quickly did tons of research and educated us on Epidermolysis Bullsa. Thanks to her we were able to put a proper treatment plan in place and had phone numbers to contact people who were familiar with this awful disease. From that moment on our lives would revolve around EB 24 hours a day 7 days a week. I was trying to process all that was happening and I could not comprehend anything. I felt like a robot just going through the emotions. 14 days later we finally were able to take Grace home. Not knowing how long we had. We had lots of different dressings, creams and medicines delivered to the house. Graces changing table became a dressing table, clothes were returned because the fabric was not cotton and my parents redid her car seat so that she would not have any skin slough off. Life was not what I expected. Grace was my heart from the moment I found out I was pregnant. I was so sad that I had to cause her pain each time I had to do the 2 to 3 hour dressing change. Where would I get the strength when all I wanted to do was to stay in bed. Then I would look in Grace's eyes and see such beauty. She was and always will be Gods precious love to me. Strength is a miraculous! It shows up in people around you when you don't have it. It reminds me of the footprints prayer. God carries us when we need him too! Thank you to all my family and friends for my strength.