28 September 2014

Lessons on Unloveliness

'Is she the only child in the world like this?'

Sitting next to me on the bench outside of the therapy gym, the young mother slowly began to trust us with what was really in her heart.  B. looked up at me, waiting to hear the answer.

'No, there are other cases,' I assured her.

'Really?' she asked in disbelief.  'Cause I've never seen anyone else's child look like this!  Show me!  Bring me to the village where there is another child like this!'  Her tone was one of deep fear and deeper sorrow.  'My husband says she's cursed.'

I took a deep breath and silently prayed . . . how does one begin to explain the genetics of a rare skin condition to a mom who never attended primary school?  How could we convince her that this was hereditary, not a deliberate act of aggressive evil against her child?  How would we support her from afar as she feels isolated and alone, refusing to give up on her little girl?

I didn't know how, so I told her a story instead.

Ichthyosis is a genetic abnormality of protein in the skin.  Typically when skins cells die, they slough off and fall from our bodies.  In certain cases, the normal breakdown of the skin-bonding protein doesn't take place, and instead, the dead skin collects in a scalelike manner over the body.  It can be common to have secondary deformities, wounds and infections, caused by the thickening and cracking of skin layers.

Little N. was referred to our therapy department several months ago from a sister hospital, hoping we could do something for the contractures forming around her eyelids--much like we do for our burn patients.  Her mom had traveled very far to get to that hospital, having heard that they cure skin problems.

We sent them home with antibiotics for her eyes and zinc for her skin . . . all we could offer.

The cream ran out and her eye infection returned . . . but the family wouldn't spare its resources on a child that was believed to be cursed.  So Mama began to save whatever she could to be able to bring her back.

When they showed up at the gym last week, all Mama had left in her pocket after paying the taxi fare was enough to cover the cost of the consultation in the Under-Five Clinic.  She was planning to walk home . . . a journey of over 125 miles.

Little N.'s doctor asked that we do a one week trial of a different type of cream, so we offered them a place to stay in the Ambulatory Care Unit.  We would do daily soaks of N.'s little body and then lather her up with the greasy lotion.  And in the mean time, it gave us a chance to build rapport and deepen trust with Mama.

Over the week, she slowly began to share the hurtful things that strangers, friends and even family have said in regards to the appearance of her little girl.  Arrows that penetrate deep in the heart of a mother, no matter how strong her resolve nor impenetrable her facade.

She had come to us looking for physical relief for her precious baby . . . for which we could do very little.  But here at Galmi, we do not believe that healing is limited to the physical.  Mama's heart was hurting . . . so we began to share with her about the One who has promised comfort for all those who mourn.

In my very broken Hausa I started to tell the story of when Jesus was on earth and His disciples came across a blind man who was sitting at the gates of the city (John 9).  The twelve men turned to Jesus and asked 'So, is he blind because of his own sin or was it something his parents did wrong?'

And in His gentle way, Jesus explained that once again, there was so much they didn't understand  (at this point I had abandoned my pre-school Hausa and B. was doing much of the heavy lifting).  'This man's blindness wasn't caused by sin!' Jesus taught them, 'But rather, so that God would be glorified through him!'

We shared with her that God our Father loves us even more than she loves her Little N.  That He is not angry with her or punishing her, but rather, His heart is hurting with hers.

Together we prayed for the promise of comfort . . . that Little N. and her Mama would know acceptance and love . . . that they would be blessed and filled with joy even in the midst of such suffering.

When we finished praying, we sat there.  In silence.  Just being there together.

I watched as the little girl who had been labeled grotesquecursed and unworthy nuzzled in the safe arms of her mother.  A place where she was always welcomed . . . where she was shielded from the wounding of others . . . where she had found her source of life and love.

I began to think of that parent-child relationship that God offers to us . . . we, whose hearts were grotesque, cursed and unworthy, are offered the abundance of life and all that our hearts long for.  Jesus said:
Come to Me, all who are weary and burdened, I will give you rest! (Matt 11:28)
Grace isn't an offer to 'all who are lovely, popular, naturally cool, wealthy, special, strong, theological or talented'.  Jesus is looking for the weary and the burdened.  He deals with the messy, with the needy . . . the incomplete and the unacceptable.

While my external shell may seem less imperfect than that of Little N., I began to see a parallel with my inner-self: broken and unlovely.  How many times in a day do I respond with impatience or anger and try to blame it on the humidity??  How many times in a day do I believe myself to be justified in complaining, gossiping or selfishness??  How many times in a day do I treat God's grace as if it were cheap??

And just like the costly unconditional love of this Mama, the nail-scarred hands of Jesus are always open, ready with acceptance, strong enough to protect,  and overabundantly generous with His grace.


Linda Watt said...

Hey sounds like you got it! Can you help me teach trauma healing? What a great story! And how we have to take all our ugliness to the cross. That is the only place we can find healing. It is o.k. to cry out though to God in all our frustration and tears!

Michelle said...

Thank you so much for seeing this little tyke for me - my heart also broke for them when I saw them here. So sorry you weren't able to help further physically. Sai Allah ya ba ki 'karfi domin ci gaban aikinmu mai nauyi!

Peter Huey said...

Great, now I'm tearing up in work. Heartbreaking stuff, Deb. Every child that comes in means this much to a mother, and you describe it beautifully. I hope you continue to have time, in the business of work, to just be together with patients.

David Misztal said...

Thanks for this story Deb. I admire your raw honesty.