One day last August, I was taking refuge in a beautiful church in Manhattan near NYU-Langone Hospital, and doing my best to feel numb. My 15 year old son was spending a week under observation in the Epilepsy Center. He has had epilepsy and autism since he was two, and over the past six years both have gotten progressively worse.

And then, as in every Mass, came the dry reading from the New Testament:

Then Jesus went thence, and departed into the coasts of Tyre and Sidon. And, behold, a woman of Canaan came out of the same coasts, and cried unto him, saying, Have mercy on me, O Lord, thou Son of David; my daughter is grievously vexed with a devil. But he answered her not a word. And his disciples came and besought him, saying, Send her away; for she crieth after us. But he answered and said, I am not sent but unto the lost sheep of the house of Israel. Then came she and worshiped him, saying, Lord, help me. But he answered and said, It is not good to take the children’s bread, and to cast it to dogs. And she said, Truth, Lord: yet the dogs eat of the crumbs which fall from their masters’ table. Then Jesus answered and said unto her, O woman, great is thy faith: be it unto thee even as thou wilt. And her daughter was made whole from that very hour.

Matthew 15: 21-28

It took a minute for the words to pierce through my torpor, but all of a sudden I felt a jolt of recognition, and I had to suppress the urge to raise my hand and jump up and down like a 1st grader. “That’s me! They’re talking about me! I’ve done that!”

While the priest explained the wisdom and kindness of Jesus in recognizing that faith and the love of God can crosses all societal boundaries, I continued to have to remind myself that Mass is not a discussion group. Every fiber in my body wanted shout out: “Hold on – you’ve missed an important point!  What shines out of this passage is the woman’s amazing love for her daughter!  This mother is enacting unconditional love, and that is what touches Jesus.”  She is willing to beg, plead and compare herself to a dog eating scraps in order to have her child healed.

I had spent all that week, and years before, waiting for crumbs of information and time from beleaguered and exhausted doctors, utterly dependent on their sometimes leaky access to the healing pipeline.  Once, I moved my chair in front of an exam-room door to keep a top neurologist from another hospital from leaving.  I know that might legally be called entrapment, but I had been waiting for this appointment for months. She had walked into the room without speaking, asked my son’s name, looked up his prescriptions, renewed them, and then picked up her bag to walk out.  That’s when I changed my seating arrangement. I needed to tell her he is getting worse! What we are doing isn’t working. We need someone to really look at what is happening to him. So I broke convention and maybe a law in order to make her talk to me.  It was the start of a long process that actually lead to the week at NYU, and a correct diagnosis.

There is a lot for a special needs parent or sick person to like in the New Testament, including healings galore: healings from diseases, fevers, physical disabilities, blindness, deafness, menstrual problems, mental illness, and (yay!) epilepsy.  Jesus makes it very clear that no one is disposable.

Mark 9:14-29, presents a detailed description of a boy having a seizure, and the conflict and disappointment the father has to go through before speaking directly to Jesus.

Then Jesus asked the father:

 “How long has this been happening to him?” He replied, “Since childhood. It has often thrown him into fire and into water to kill him. But if you can do anything, have compassion on us and help us.” Jesus said to him, “ ‘If you can’! Everything is possible to one who has faith.” Then the boy’s father cried out, “I do believe, help my unbelief!”

The father had already proven himself. He believed in his son’s value and worth (even in a time when epilepsy was thought to be caused by demonic possession), and in his own willingness to reform his very belief system if his son could be healed.  In Luke 5:17-39, the friends of a paralytic man disregard a daunting crowd and disapproving religious authorities, opening a hole in the roof of a house where Jesus is teaching and lowering the patient down on a litter.  The people in these stories care about each other and value humanity, even when the body in question is broken or frightening.

What pushing crowds, social humiliation and angry authorities would you confront, how much begging and rendering of your spirit would you endure to heal a loved one?  Imagine what that would actually be like, and how you would be humbled and changed. While heroic parenting is a popular cliché now, in truth many families and communities react to illness or disability with passivity, denial, or shame, so this fierce love is not a given.  The special needs families in the New Testament are embodying Jesus’ message of fierce love in their own actions.  They both act and have faith.

During that week at NYU, my son was diagnosed with a serious and drug resistant form of epilepsy.  This was not good news, but it caused him to be put on the correct medication, which has reduced his seizures.  We are not healed, but neither have we been forsaken. With the help of friends, we’ve been lowered through the right roof and connected to a healer (doctor), who has both wisdom and a merciful conviction that my son is worth the time to treat thoughtfully.

At the end of the passage about the epileptic boy, Jesus says to his disciples, apparently referring to epilepsy: “This kind can come out only through prayer” (Mark 9:29). Although I don’t take that as a dismissal of medicine, it feels true spiritually. This invisible, unpredictable and sucker-punching disorder, based in the mysterious ebb and surge of brain electricity, has forced us to hold hands with fragility. Certainly my pain in the face of it can only come out through prayer, and handing it over.

When my son was little, I publicly explained his oddities – his double earlobe, developmental delays,  disjointed movements and seizures – by saying that he seemed to have been ‘put together following the Ikea directions.’ I didn’t know then that he had a genetic abnormality which caused all of these other symptoms, but my assessment wasn’t so far off.  While it sounds like an irreverent quip, what I really meant was that I didn’t care what the actual problem was; I wasn’t ashamed, and I accepted him as he was. He and I and special needs parents going back millennia know that just by his existence, by his capacity for joy, by the love he gives and receives, he is ‘fearfully and wonderfully made.”

~ Connie Phelps @conniebmore (Twitter)