Six years ago....

This month marks six years since Faith was diagnosed with Cerebral Palsy. She was just barely five months old. Even though we knew what happened to her since the beginning, we were not told what it meant for her when we left the NICU. When we came home, she was on Tegretol but they didn't say "Faith has epilepsy" even though she had lots of seizures while she was there. When we went to the neurologist that day, Faith had recently had an EEG and an MRI and we didn't even know what we should be expecting. To be honest, we were thinking everything was going good. She had rolled over just recently and we thought that she looked fine, to our untrained/ignorant eyes. That day, we sat in the office waiting for the doctor, we were laughing and playing with her, not worrying about anything. The doctor came in with her scans and pictures of Faith's brain and held them up and told us that Faith had something called Cerebral Palsy, that she had been afraid that she did but had waited to tell us until Faith was showing signs of problems. She said that Faith had persistent primitive reflexes and was showing signs of delays. We didn't even know what CP was, we thought it was something like D.S.. We just sat there in shock, as she described what she saw for Faith's future....diapers for the rest of her life, no walking, no talking, the word "vegetable" was thrown out and even suggestions were made that she might need institutional care. This doctor will remain engraved in my brain for the rest of my life, not just because of the dx, but because she was so cold and factual. She just blurted these things out and gave us no recourse or anything to do. We left that office not understanding anything. We still didn't know what CP was. I remember I was crying uncontrollably and Carl was too. Faith was in my arms looking at me like "What's wrong?" I can still see her little face. We had been given a pamphlet for Family Connections to contact and we were referred to Baby Net but we had to drive nearly two hours home, knowing nothing about CP. I get physically ill when I remember that day....the worst was laid out for us and our tiny daughter. I had to go home and make all these phone calls to people and doctor's offices and tell them about something I knew nothing about.

I remember the first call to a friend I made, my friend Kim, the lady who got Faith to nurse after 9 weeks of work. She prayed this beautiful prayer on the phone while I bawled my eyes out and then told me she was coming to my house the next day to talk. She knew about CP and had worked with kids like Faith in her work as a Breastfeeding Consultant. She was positive and encouraged me telling me that Faith had learned to nurse so what they forecasted might not be entirely true! She kept telling me that Faith was a miracle and God had a wonderful purpose for Faith! Boy did I need that!
Some of the things the doctor warned us about have happened, some have not, some new things have shown up but they don't make Faith who she is. They are part of her, they give people pause to look at miracles but they don't make her a good girl or a happy girl. That's GOD given! When I remember that day, it seamed like nothing could be worse, nothing could ever be better. But slowly it did get better. Her dynamic personality covers up everything that is so painful. I know now that all three of us have what it takes to live with this situation. I have grit and determination, Carl has love and compassion and Faith has slow, steady resolve as well as a happy spirit and a light heart.