Oct 20, 2008

claireokay i am going to be completely honest and let you all know how tough the last few days have been for me. i have been feeling really hopeless and helpless and starting to lose all faith that Claire will be okay. she is now 8 weeks adjusted in age and i still have not gotten that pretty smile i see when she’s sleeping, she also hasn’t cooed yet and doesn’t seem to want to make eye contact very often. to top it all off, we made a formula change per her GI specialist’s reccommendation which really jacked up her tummy. she has been a gassy, crampy, sptting up and crying mess since friday. then, the first time i tried to bottle feed her on my own on saturday was going so well until she stopped breathing and turned colors again. i truly trusted God that we were past that and had so much faith that she wouldn’t do that to me anymore. when it happened i was totally devastated and haven’t been able to regain confidence again. it just feels like that whenever there is improvement, there is then a step backward. i try to focus on the things she can do like lift her head, bring her hands together and kick her legs but it is so hard. i am in mourning that all the dreams i have for her will probably never be realized and she will have significant delays because of her brain abnormalities. i just don’t know for sure what they will be in the future. i wish i could just focus on one day at a time and rest in the truth that she will be loved no matter how she turns out but i honestly can’t. i am so sad and so angry at God still. i don’t know how to get beyond this point. claire needs your prayers to be healed and grow and develop but i need your prayers too. i am having an extremely difficult time with all of this.

The sky is grey and the light is far
The sea is a rage within my heart
I turn my sight to the crashing waves
I cry in the night just to be saved
I need eyes to be my guide
I need a voice that’s louder than mine
I need hope, I need You
Cause I can’t do this alone
Grace, I call Your name
Oh won’t Your smile fall over me
I’m cracked and dry on hands and knees
Oh sweet grace rain down on me, I need You grace
I pray for dawn, a new day to live
I pray for mercy only Jesus gives
Though darkness falls and a million cry
I believe over all there’s a greater light shining for us
Come down and save me

– grace by phil wickham

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