Nine days ago I rented Noelle a wheelchair. Not because of a passing injury that will heal. We have no time schedule. Her pain is so intense and her fatigue so overwhelming that if we want to leave our home she needs a wheelchair. Sometimes it is bad enough that I carry her up and down our stairs. My heart breaks as she begs me to take her to watch her soccer team play. I load she, her sister, the wheelchair, and blankets into the car. I push her over grass and other obstacles and watch her, watch her friends run. I don't understand, Lord.
Almost two weeks ago we met with Noelle's teachers. We dropped three classes hoping she could manage four of them. Since that day she has been to school once. Yesterday I emailed her guidance counselor to withdraw her from classes. This can't be happening. She is the one with desire, a plan, study skills!!! She wants to be a nurse. She wants to get a 4.0. She is so social. Now she cannot concentrate. I mourn with her. I pray that this delay in her plans, her dreams, is short. Some days it is almost unbearable. But I am supposed to be the strong one. I pray her friends will take notice that she is missing from their circle and will love her, invite her, text her. I don't understand, Lord.
Sometimes I think about the words "chronically ill". Do I have a chronically ill child?
-continuing a long time or recurring frequently
-having long had a disease or weakness
-having long duration.
I guess four plus years of battling symptoms counts. I guess spending the last month mostly in bed counts. I don't understand, Lord.
I don't know how to mother a chronically ill child. I love her so much. Those of you without an ill child are saying that is enough. Those of you with experience...any ideas? How do I leave her to do things? How do I encourage her without pressuring her? How do I deal with seeing her in pain every day?? How do I have enough left for Scott, Jake, Teme and Sabrina?
In You, Lord my God, I put my trust. I trust in You; do not let me doubt, nor let my circumstances triumph over me. No one who hopes in You will ever be alone. Show me your ways, Lord, teach me Your paths. Guide me in Your truth and teach me, for You are God my Savior, and my hope is in You all day long. Remember, Lord, Your great mercy and love, for they are from old. Do not remember the sins of my youth and my rebellious ways; according to Your love remember me, for You, Lord, are good. Good and upright is the Lord; therefore He instructs sinners in His ways. He guides the humble in what is right and teaches them His way. All the ways of the Lord are loving and faithful toward those who keep the demands of His covenant. For the sake of Your name, Lord, forgive my unbelief, though it is great. Who then are those who fear the Lord? He will instruct them in the ways they should choose. They will spend their days in peace, and their descendants will inherit mercy. The Lord confides in those who fear Him; He makes His presence known to them. My eyes are ever on the Lord, for only He will release my body from pain. Turn to me and be gracious to me, for I am lonely and afflicted. Relieve the troubles of my heart and free me from my anguish. Look on my affliction and my distress and take away all my pain. See how numerous my afflictions and how fiercely they attack me. Guard my life and rescue me; do not let me be downhearted, for I take refuge in You. May integrity and uprightness protect me, because my hope, Lord, is in You. Deliver me, O God, from all my troubles.
Noelle had a rough weekend. We are doing a study on spiritual disciplines at church and we are studying prayer this week. I am trying to figure out how that needs to look in my life. I know I need more. This paraphrase is for Noelle. I am going to try and pray this for her, over her, frequently. She had to come home early from homecoming, no bonfire for her. She had to watch her soccer team laying on a blanket. That was the only time she left her bed yesterday and she is there again today.
We watched a documentary on Lyme's disease, "Under our Skin". Scared me.