Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
My daughter started palliative care a little over a week ago. Palliative care is not hospice, but there is recognition that comes with that action—that life is precarious.
It has been a tough month. It has been a tough year. It has been a tough journey. I did not understand six years ago how my daughter’s life would be changed by the utterance of two words, moyamoya disease. I did not understand how my life would be changed.
There are days when my faith burns bright and nights when it is a mere flicker, vulnerable to the next strong gust.
On my worst days, it is hard to rise, put on a face and hold back from raging at the world, raging at God for her suffering. There are days I want to toss my faith in the garbage can, because it feels easier to live with the belief there is no God than accept the idea that God is allowing her pain.
On my best days, I only see God’s gifts. She received a diagnosis. Too many patients are left wondering and hopeless searching for answers. She has been given the means to afford travel to top specialists across the country. Too many patients are left untreated because they have no insurance or have the wrong insurance. She was gifted a son, before she became physically unable to have children. She has been gifted a husband who is unflinching in his support. She has been gifted with a sister who makes her laugh on her most difficult days. She has been gifted with in-laws who pour out their love, time and energy to make her life easier on a daily basis. She has been gifted with friends who are family she is able to turn to with her hopes and her fears. She has been blessed by six more years of life.
In between my best and my worst days, I remind myself, I have been blessed with a life, not promised an easy life. I have been gifted a husband, family and friends who make my life easier. I have been gifted with Knowledge; knowledge there is a God who, despite my faithlessness, is faithful to me; knowledge there is a God who has sacrificed his own child to assure my child’s everlasting life; knowledge there is a God who loves my daughter infinitely more than me; knowledge God has a plan for my child’s life.
And still there are days where the weight of my daughter’s hardship crushes my soul and I can only groan.
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