Her good days are good. Her hard days are so hard. On the good days her beautiful personality shines through, her smile makes my heart content and I think we can do this. On the hard days our hearts break as she struggles just to be in this overwhelming world and I don’t know how we can do this. When she was younger I didn’t know what she was thinking or feeling on the hard days. Now that she is older, I still don’t know, but I feel sure that she feels anger, isolation, sadness, and frustration over the limitations and struggles that come with her autism. She grieves, and we grieve with her. Her school day sheet puts numbers to it – self-injurious behavior, non-compliance, time in the safe room; yesterday was one of the hard days. Sometimes her grief comes in the form of aggression, but lately she weeps. As I helped her in the bathroom she sat and cried and ate toilet paper. In her bed she screamed and screamed, pulled out her hair, pulled her clothes, kicked and kicked the rails on her bed. I stood by watching helpless remembering Brandon’s recent prayer over the phone, Lord please be near to her. Bring joy to her heart. Show us how to help her. When she settled just a bit, I dared to come close and kiss her hot check and whisper the verse I’ve said to her every night, all her life. The verse we picked for her before she was born. I’m thankful for these words said out loud on the hard days, I could not have known how meaningful they would be, what a hope, what a promise they would bring:
Rhema, the Word is near you; it is in your mouth and in your heart, that, is the word of faith we are proclaiming: That is you confess with your mouth Jesus is Lord and believe in your heart that God raised Him from the dead, you will be saved.
*Thank you to my CBS Bible study sisters for praying for Rhema’s day at Mass General on Wednesday! She went through her appointments, injection and blood tests well! Test results showed that a medication she’s been receiving in the form of quarterly injections is not working, and we have to make a rather tough decision about what to do next. I’m thankful that our decisions for her medical care are not a matter of life and death as it is for some parents. Still these decisions weigh heavy as we try to figure out what’s best for sweet Rhema.