Day 652

IMG_7333I am weighted down by two large millstones. They pull and tear and try their best to break me.

Three days I have battled excruciating pain as muscles atrophy and joints bear the burden of moving my body forward. This is neuromuscular disease for which there is no treatment or cure. My doctor at the UPenn MD clinic connected me with a doctor at the NIH who would like to see me. But this entails paperwork and forms and travel and a lot of stuff that I already do for Justin. Makes me feel exhausted even thinking about doing this for myself as well.

My youngest son battles leukemia for which there IS treatment but, although chemotherapy kills cancer cells, it sometimes becomes too harsh for his little body. Justin’s platelet count has crashed considerably and his eyes are yellow where they should be white. His doctor has taken him off all oral chemotherapy drugs until his blood counts return to a more comfortable level. He will be re-checked in two weeks.

We are also waiting on the results of his liver toxicity screening. This is something we’ve had our eye on all month, and has improved some with good hydration. But Justin’s eyes are still not okay, which makes me think his liver is also not okay.

Yes, I’m a little worried. It all feels like a kick to the face even as I struggle to get up.

Still, I am not broken. A little more cracked, perhaps, but not broken. This is because I trust in a God who is bigger than all of this. A God who has sent help time and again. My God. All of this will fade away, but His kingdom is forever.  Because I believe this, I know that no matter what happens, we will be okay.

We WILL be okay.

I waited patiently for the Lord;
he inclined to me and heard my cry. He drew me up from the pit of destruction, out of the miry bog,
and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord. Blessed is the man
who makes the Lord his trust, who does not turn to the proud, to those who go astray after a lie! You have multiplied, O Lord my God, your wondrous deeds and your thoughts toward us; none can compare with you! I will proclaim and tell of them, yet they are more than can be told. In sacrifice and offering you have not delighted, but you have given me an open ear. Burnt offering and sin offering you have not required. Then I said, “Behold, I have come; in the scroll of the book it is written of me: I delight to do your will, O my God; your law is within my heart.” I have told the glad news of deliverance in the great congregation; behold, I have not restrained my lips, as you know, O Lord. I have not hidden your deliverance within my heart; I have spoken of your faithfulness and your salvation; I have not concealed your steadfast love and your faithfulness from the great congregation. As for you, O Lord, you will not restrain your mercy from me; your steadfast love and your faithfulness will ever preserve me! For evils have encompassed me beyond number; my iniquities have overtaken me, and I cannot see; they are more than the hairs of my head; my heart fails me. Be pleased, O Lord, to deliver me! O Lord, make haste to help me! Let those be put to shame and disappointed altogether who seek to snatch away my life; let those be turned back and brought to dishonor who delight in my hurt! Let those be appalled because of their shame who say to me, “Aha, Aha!”
But may all who seek you rejoice and be glad in you; may those who love your salvation say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God! Psalm 40 

 

 

 

 

 

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