Brody is resting peacefully right now under heavy sedation. I've hardly seen his eyes today. It seems that when he is awake at all he is storming. And there is still some question as to whether these storms are as painful to him as they appear. But at least, for a moment, he appears to finally be comfortable.
I met briefly with a member of the hospital's palliative care team who call themselves the Rainbow Kids. Its a group of 5 people who are here to "offer comfort, advice, and support to families, wherever the path may lead". They said they are not affiliated with any unit of the hospital. They are, in part, here to help bridge the communications gap between families and caregivers. And to see that our wishes for our child's care are honored.
I miss my family being whole. I hate that I haven't seen Kaybri's precious face for nearly two weeks. Its so hard and unfair. I always try to put on a happy face and remain as strong and steady as possible but I am breaking down. I continue to pray often. And from there, what else can I do?
1 year ago