Even with perspective I still find myself kicking and screaming into the weeks that i have to go to Boston. The grandeur of her malformations and the she will undergo, takes my breath away. But it can be fixed. Some days are better than others. I'm trying to keep busy helping at Griffs school, sewing, doing random things. Camping seems to be a wonderful escape for me and time to be together as a family, so we have lots of trips planned.
I worry myself with the craziest things like, "does a baby who is given narcotic pain meds like morphine and opioids have a higher risk of becoming a drug addict later in life?"
My dear friend shared this devotional with me.
"Oh, Father. The dread of what is upcoming is overwhelming my thoughts and spilling over into my attitudes. My fears are holding back your power in my own heart! I want to move out of your way and allow you to go before me. I want to replace the dread with expectation of all I know you can do in this place and time. Help me watch for you, to expect you, to know you are at work, even if I don’t see it. I place my hand in yours, knowing that resisting you is exactly what my enemy desires. Help me stand firm against him by choosing you. "
I've decided to stay right at the hospital for the length of her stay... 5 blocks away is far too far away for this mama. And hey I'll get 3 meals of hospital food a day!
I pray for this child fervently. So many people are praying for our girl. When I pray in a sad worried kind of way, the still strong voice whispers to me "hang on, I'm not finished yet" in a gentle loving way. They way a mother would respond to their child who is asking for something, maybe over and over. The mother responds "hang on, im not finished yet" His work in forming her isn't done yet.
"for this child we have prayed, for She is fearfully and wonderfully made"
I attached a photo of her MRI showing the large cyst of cerebral spinal fluid on her back and her bladder exstrophy.