Wednesday, May 26, 2010

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.

7 comments:

Jen said...

That Drs manner was awful, I am so sorry you had to go through that, it must have been devastating to hear that news on top of being treated that way. Faith is amazing, so are you and Carl:) Jen.

The Henrys said...

Candace,
This brings back my own memories of the day we got the CP diagnosis from our doctor. It was very overwhelming, wasn't it?

As I read this, I felt so much anger. There is no reason why you, and we, were told those predictions about our babies. The doctors do not have a crystal ball, and they should not fill our hearts with such pain when they really don't know what will happen.


I am so glad that you found support soon after the DX, and I am really glad that Faith has proved that doctor wrong in many ways.

Cjengo said...

Beautiful post!!! Strange you wrote about this because I found a picture of Jude at Cooks when he was first diagnosed and I was going to write about it. I just sat looking at his photo remembering that day, bleh!

Mo said...

I can so, so, relate to you on all levels. Not a soul can understand the emotion it causes unless they have been in the exact same situation with their own child. Powerful and life changing as it is, yet still so beautiful to be given the change to see life from this perspective.

Lisa said...

Heartbreaking and beautiful at the same time. I can relate in many ways.

Coley said...

Hey Candace. It's Coley from Coley's Corner, Noah's Mom. Noah is not having this surgery at Shriner's but he has had surgeries there in the past. Shriner's couldn't do this surgery until December and the dr there was afraid that Noah might be too stiff to do the surgery by then so we found another dr.

Thanks for the prayers and thanks following - I'm intrigued by Faith's story and will be reading more when things slow down.

Alicia said...

The doctor that day may have given you a great gift that day: the lesson to never put too much weight into what a doctor says your child will and will not do. The only One you should put all your faith in is The Great Physician.

I am so glad you can realize that Faith is so much more than a diagnosis of CP. She is love, kindness, and beauty. That is something no doctor's diagnosis or prognosis can ever take away from her.