"Everyone needs a place to call their own"

Saturday, May 31, 2014

The worst kind of heartache....

Tonight seemed like any other night, Ayla and I had just made "Not Yo Mamas Banana Pudding" together and it was time for treatments. She walked over slowly....and said she wanted to be normal and not have CF. Those words always catch me off guard and take my breath away. I told her I understand but what's normal anyhow!? She dragged herself over to her treatment center and I could feel her welling up inside. I put down the dishes and went over to her and got to her just before she lost it. I got down on the floor with her and that's where we stayed. She was hurting so....."why don't I have any cf friends?" "Why am I always sick?" "I don't wanna drive hundreds of miles to the dr" "I don't want to go in the hospital again" "I don't want to do this jacket all the time" 
My mind was racing, what do you say to a child who is different to make them feel like they are not? How do justify the need for dr's, treatments and hospitals without being insensitive to the fact that is SUcKs! 
I felt myself pray, and say "I can't do this god" 
We prayed, we cried, we read her life verse in the bible (Isaiah 61) I asked if she wanted to write in her "angry journal" she said she did. So we started the treatment and she began....I sat across from her trying to compose myself. 
I was just watching her write throigh tear stained pages, I've never really seen her upset for this amount of time. I went back over to her....I explained that so many have struggles, we have our own...she is normal she can do anything she wants. Talked to her about fighting for a cure and what that could mean for her. Talked about hope and finding it always. She desperately wants a friend to talk with..I told her how many people in the world have cf. She can now understand numbers and place value do she seemed to be pacified by that. Ofcourse she apoligized for making me cry, she is such an angel. 
I never imagined I would be living the life I am. Never imagined I'd be fighting for my child's life. Never imagined her pain would be from my genetic makeup. I had never heard of cf when I had her. Never knew a soul who dealt with it. And as the years went by I became familiarized with the medical side (which is no walk in the park) but the layers that are being revealed to me as we age are often more than I can bear. I read a blog today about giving it to god. I could never bear it on my own. I pray for stength bc I am weary lord. I know he helps me to say the right things because she often feels better after we have it out. But I am left feeling like I battled it out and lost all my company-men and am left alone to deal and pick up the peices. I know it's not true, I have so many to help me through. But just as Ayla feels no one really gets it. I am with her...this is our bond, the one we never asked for but as special as they come.....

1 comment:

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