I just want my life to be normal again. I don't really want a new normal. I just want my baby girl to be alright! And yes, I want her to be hormal.
It's so hard to lay down the dreams that I had for her ... for our family ... and for what our life would look like with 6 children. I've always admired others who went through such struggles and had amazing faith and testimony as a result of it. I never wanted to be one of those with a story to tell though. Sounds shallow I know - but it is the truth. Now that I'm in the midst of the biggest struggle I've faced yet, I just hope that God can do something with me. Redeem me in some way. I know He can do it - it is just wondering if I'm able to let Him do the work in me that He wants to do.
I long for the days when a tough day was dealing with bickering, messes and things not going according to my plans. I don't want to have medical equipment in my bedroom. I don't want to know my way around a children's hospital. I don't want to be counting ounces and measuring time by feedings and pumpings. I don't want to have to wake a baby to feed her because she doesn't wake to ask for food herself. I don't want to be sequestered in my home because the idea of my baby getting anything could be so damaging to her. I don't want to be waiting and waiting for the day when my baby is in such heart failture that she will require open heart surgery. I don't want to have to deal with special needs.
There ... all the things that I don't want to have to deal with. Does it sound so selfish? Like a lot of self-pity? I'm not really sure, but it is where I am right now.
I'm so very thankful for the encouragment of others and know that I'd be in a much worse place without that. It's hard to even let people know how to help - I really dont' know. I just know that this is a hard place. One I never wanted to visit. One that I hope I emerge from better than I am now.
Help me Father. This load is so heavy.
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