What I believe....

Today, Ellen, Max's mom posted a great blog about blaming ourselves for our children's disabilities.

So I decided to talk about my perspective on the subject...

When I was 19, I was diagnosed with juvenile type 1 diabetes. I always thought, I would never have kids and when I found out I was pregnant it was the furthest thing from my mind. I had not done the best job controlling my blood sugars but as soon as I found out I was obsessed with testing, every day.

(me when I was about 8 months)

I did a good job (my endocrinologist even said my blood sugars were better than hers) and we were all convinced that our baby would be fine and that we would have a perfectly healthy baby girl.

(The first picture of Faith, about 7 weeks gestation)

Things, of course, did not go as planned. She was turned wrong and had to be delivered via C-section, after 4 hours of pushing. Then she had hypoxia and developed seizures that went unrecognized by the community hospital staff. There was no NICU for her without moving her and putting her into a coma. She had developed a blood clot that lodged itself in the saggital sinus area of the brain that prevented her from getting oxygen. She was NOT OK.

(Faith about 6 months old, you can clearly see the stair step on her forehead that revealed craniosynostosis, a cranio-facial defect of the skull)

Things happened, she suffered a stroke and parts of her brain...died.From the start...I blamed myself. It was ALL my fault! It was...really! I....Candace....held responsibility and blame and control over all that happened to my daughter. At least, that's how I felt back then.

It was a huge burden to bear and I suffered with it for a long time. But grief eventually leads to acceptance and a clearer perspective of reality.

So here is what I believe about Faith and what happened to her...

I believe that Faith was meant to be how she is.

I believe that something may have happened during fetal development that caused her brain/skull to develop abnormally.

I also believe that I should have been delivered at a larger hospital with a NICU, a decision that was ultimately my doctor's. And that the nurses and doctors who cared for her should have identified her condition sooner.

I believe that I am just human and ONLY GOD can control what happens to my child. I can only be the best mom I can be. Even if I don't understand. I am not some special, magical person who can control, fix or change the outcome of a stroke.

I believe that GOD gave us Faith, to show us what true love, sacrifice, commitment and faith is all about.

I also believe that it is absolutely NORMAL for a parent to have those emotions, it's sort of a rite of passage, on that road of grief.

I believe that although it is not easy, although NO parent wants something to happen to their child, although it can be heartbreaking to witness....Faith is MY miracle! She would not be Faith if she were any other way.

Miracles do NOT always arrive with a beam of bright light, they do not always come dancing down the road and tap on your shoulder and say "Hi, I am your miracle". Often they sneak up on you and grab you by your shoe laces and trip you. And at first they can feel like a slap in the face and you want that "miracle" to go back where it came from. But if you give it time and try to learn how to cope....your miracle will flower into this beautiful example of God's commitment and love to His children.

I know that what happened to Faith was not my fault, it wasn't any one's FAULT. Some mistakes were made, things could have been done to catch her stroke quicker. But in the end, she is perfect just the way she is. If I can say my daughter understands love and happiness and compassion...what more could a mother ask for?
(Faith at 11 months old, after her craniotomy. I have to laugh at her hand in this picture!)