Our appointment was for 6:30 pm. We arrived a little early. Our names were called. We laid our healthy 6 month old little girl on the exam table, the pediatrician walked in-that ladies and gentlemen is when our world crashed to a screeching halt.
One year ago today Emily was diagnosed with infantile spasms.
Our pediatrician was young, newly graduated. As soon as he saw Emily he new immediately what was going on with her.
He walked out of the room, called an ambulance and came back with the nurses to help.
They all looked at us with sad, tear filled eyes. They new the diagnosis. They new the long, hard, painful road we were just thrusted upon.
I did not understand....yet.
We sat in the ER for what seemed like forever.
We had so many different doctors come look at Emily. They all wanted to see "what she did".
They all had the same sadness in their eyes.
Before the night was over we saw over 15 different med students, residents, and attending physicians.
We were overwhelmed.
The next day our neurologist sat down and began to explain the diagnosis. I almost laughed! Infantile spasms, ha! That does not sound bad, but why does he look so sad?
After he left, I must admit, I was mad. I did not know who to be mad at so I was mad at him. The man who diagnosed my little girl with such a horrible thing.
I could not even bare to look at this man when he came back in. I needed a face to this diagnosis and he got it. I blamed him!
I quickly realized that was just my way a dealing with such pain.
Today, I could not be more thankful for Emily's neurologist.
I know he wants Emily to have the best life that we can possible give her. He has been patient with me and understanding especially in the beginning when we rushed Emily into the ER every time something new came up. He knew that we were scared. Every time we called the on-call doctor at 3am we were really scared and he would calmly say "bring her in I will be there in the morning". He could have been upset and frustrated with us and gotten sick and tired of me calling all of the time.
Instead he gave me his cell phone number.
Thank you Dr. F.
This past year I have learned a lot.
No one will ever understand what we go through on daily basis unless they actually do go through this on a daily basis.
I am much stronger that I ever gave myself credit for.
Some days I am not strong at all. I just get by and that is OK.
Some people are not strong enough to handle the person I have become. That is OK, too.
I need and love my husband more than I ever thought I could.
It is OK to admit when I need help. It has been very humbling.
Help does not always come from the places you expected it.
Support groups have been very helpful. They get it.
Isolation and loneliness are terrifying.
Emily's smile make my day.
Emily's milestones may be few and far between but that just gives me longer to enjoy each one.
I get mad and yell and scream why to God. He is big enough to handle it. He also forgives me.
As much as I love Emily God loves her more. I can't fathom that.
I do not understand why Emily suffers, why we suffer. I probably never will.
God is the same God that he was before Emily was diagnosed. He has not changed, we have.
Joe and Emily complete me.
Emily is perfect.