Rae has been sick lately...for a couple of months actually. Nothing serious enough to drag her into the emergency room, but we have been in and out of the doctor's office weekly. Her temperature kept fluctuating up and down (a high of 101.7), she developed a really nasty cough (more choking than cough), her appetite dropped (she LOVES to eat), and her sleeping patterns shifted (6pm to 3am...not my idea of fun). After three x-rays, multiple blood draws for lab work, and two appointments with an infectious disease specialist we found out that everything is "normal" (honestly that is such a relief). Her body is not showing any signs of preparing for battle. We have ruled out most of the usual suspects and the last one to check is her swallowing issues (we think she is now aspirating food not just liquid). We have preemptively stopped feeding her most solids and increased the thickness of her liquids from "nectar" to "honey."
To say I was at my whits end at times during the last two months is an understatement. I was bedraggled, exhausted, and perplexed because everything kept coming back "normal." Feeling completely helpless to do anything that could help her was frustrating. Another coughing/choking fit would take control of her little body and as I cradled Rae in my arms, trying my best to soothe her, I could hear my inner voice singing,
"Have Thine own way, Lord! Have Thine own way! Thou are the Potter, I am the clay. Mold me and make me after Thy will, while I am waiting yielded and still."These lyrics have become a source of comfort for me. I struggle with the "why's" of Rae's Rett Syndrome. Why us? Why her? Why Rett? Why? Why?? Why??? I also struggle with my own confidence in being her mother and being everything she needs me to be for her. Will I be strong enough? Will I be patient enough? Will I be assertive enough as her advocate? The questions are endless. This simple hymnal reminds me that I am as much a work in progress as Rae is and it takes time. Singing this to myself helps me not loose it when she's in the middle of a 20 minute tantrum, spitting her medicine out, refusing to drink a bottle, or coughing uncontrollably.
"Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand." ~ Isaiah 64:8 (NIV)God is the potter. I am a ball of clay. My life began when I was thrown onto the wheel and painstakingly shaped and reshaped by His hands. I'd like to think I am no longer on the wheel, that I am waiting to be fired, but He is not done with me. At best, I am sitting on a shelf, drying, waiting for the final touches before being placed in the kiln. However, I believe I am still spinning. In the short time that Rae has been with us I have already felt myself changing. My patience, my compassion, and my faith (to name a few things) have grown. Rae has become an extension of the Potter...a tool one could say...reshaping how I interact with her and the world we in which we live. Am I perfect at being her mother....nope, not at all. Am I trying the best I can most times...absolutely.
Have Thine Own Way, Lord
Written by: Adelaide A. Pollard
- Have Thine own way, Lord! Have Thine own way!Thou art the Potter, I am the clay.Mold me and make me after Thy will,While I am waiting, yielded and still.
- Have Thine own way, Lord! Have Thine own way!Search me and try me, Master, today!Whiter than snow, Lord, wash me just now,As in Thy presence humbly I bow.
- Have Thine own way, Lord! Have Thine own way!Wounded and weary, help me, I pray!Power, all power, surely is Thine!Touch me and heal me, Savior divine.
- Have Thine own way, Lord! Have Thine own way!Hold o’er my being absolute sway!Fill with Thy Spirit till all shall seeChrist only, always, living in me.