Sad

I normally don’t blog when I’m sad.  I usually journal about it privately and wait till the joy creeps up again to blog about the sadness in hindsight.  But today, for some reason, I just feel like being a little more raw before you, my family, my friends, people I know but have never met, people I don’t know at all.

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.”
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13 thoughts on “Sad

  1. We pray for you guys often. It comforts us to know that another family who are believers undertand the journey we are on. I understand how much your heart aches. Hang in there and know that a family you have never met from WA is lifting you up in prayer!!

    Love, Nick, Anna and Parker (who has JS too!)

  2. Sometimes writing while we are in the midst of our pain and sorrow is helpful, it’s what your heart needed to do today. I can’t imagine how awful the thought is of your son loosing his sight, reading this made me sad too. Sending lots of love and prayers your way, today and always.

  3. Thanks for sharing your heart. Praying for you and your dear family that God will grant you the true joy and comfort that only He can give. Love you guys…

  4. Your family is such an encouragement me to me, Sue. Even in your moments of weakness, I am blessed to hear your surrendering plea to the Lord. I think God is calling all of us to just surrender…love you!

  5. Hi Sue, you don’t know me, but I stumbled upon your blog and just wanted to thank you for sharing your heart with us. I pray that God continue to give you and your family strength to endure, and that He brings comfort and joy to your hearts.

    I also wanted to share a song with you that really encourages me, and I hope it’ll encourage you too.
    Its by Laura Story, the song title is “Blessings.”

    The story behind the song:

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