The Hard Days

I have an arm injury from carrying and transferring Collin that I've been fighting for more than three years. This week, I haven't slept over two hours in a row because of the pain and burning from my shoulder blade to my fingers. I have trouble opening containers and putting on mascara and holding a book.

Photo credit Azlan DuPree.

Photo credit Azlan DuPree.

Earlier this week, my dear friend ended up in the emergency with her daughter for the umpteenth time this year. It was another major seizure, this time complicated by a fall. The family also just received the results of their daughter's exome sequence last week and are still wrestling with the emotional difficulties of rare diagnosis.

Another friend was also just in the hospital when her son's j-tube came out.  She made a six-hour round trip so that he could be seen by doctors able to handle his complexities. I've lost count of how many times she's made that drive this year for procedures, surgeries, tests, and second opinions.

My Facebook groups are full of questions and concerns about kids who can't eat and kids who can't grow; challenges with insurance companies and challenges with medical equipment; parents fighting tooth and nail for their child and parents at the end of their rope.

Everyone suffers. I know this. And the joys are real and powerful and special. But sometimes the particular brokenness faced by this particular community makes me ache with weariness.

Do you know anyone living with a disability? Ask about their hard days.