The other day, Marcus and I were reading about Jesus healing the blind man. I asked him if it was easy for him to see or hard for him to see like the blind man. He said, "Hard." Then he said, "I can't see in the dark." For the past 6 months to a year, Marcus has been saying more that he's scared of the dark and that he can't see in low light conditions. This isn't surprising considering his Retinitis Pigmentosa. But we can't help but wonder if it's getting worse, or if it's that Marcus' speech is just emerging enough for him to express to us what he's been seeing or not seeing all along.
In any case, it's a rude reminder of what the doctor has told us...that Marcus' eyes have very limited function and that he will eventually lose the vision that he has.
I'm so sad. I ache. I feel weak and burdened. My heart is weary from all that Joubert Syndrome entails and how it's affecting all the other families we know. I wish the Lord would come right now to take us to our eternal home, where Marcus will be able to run, sing, jump, and SEE the beauty of His maker. I long for Him to come and rescue me from this perpetual burden, to take me to where He is, so I could just lay in His arms and worship and rest.
Praying the Lord will keep me convinced of this promise:
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
- Romans 8:38-39
My sister sent me this Charles Spurgeon devotional and I was encouraged by it:
A Child of God is not expected to be stoic, for God's grace takes away the heart of stone. When we endure trials, we feel the pain. Do not ask to be made hard and callous, for this is not how grace works. Grace gives us patience and submission, not stoicism. We feel, and we benefit by the feeling. There are some who will not cry when God chastens, and there are some who will not yield when God strikes. Do not be like them! Be content to have Job's suffering heart. Feel the bitter spirit and the anguish of soul which racked that blessed patriarch.
My dear friend, when grief presses you to the dust, worship there! Remember David's words, 'Pour out your heart.' But do not stop there; finish the quotation. 'Pour out your heart before Him.' Turn your heart upside down, empty it, and let every drop run out. 'Pour out your heart before Him; God is a refuge for us' (Psalm 62:8).
When you are bowed down beneath a heavy burden of sorrow, worship and adore God there. In full surrender to His divine will, say with Job 'Though he slay me, yet will I trust him'. This worship sweetens sorrow and takes away its sting."