I’m presently sitting in the waiting room at our home away from home–the specialty hospital where Grace’s neurologist works.  We were here last fall overnight.  We come here for Grace’s Toradol injections.  We come here to see Grace’s very specialized neurologist who is a sleep specialist.  Now, we are here for Grace’s third neuropsychological profile.  Dr. Fabulous, Grace’s neurologist, ordered it.  Grace had a neuropsych two years ago, but it’s time for another one.  We’ve been here since 9 AM.

This speciality hospital only treats a few things.  I am surrounded by profoundly disabled infants and children on the spectrum of all manner of diagnoses.  The looks of adoration on some of the parents’ faces as they gaze at their children is having an effect on me.  I’ve had to hold back tears a few times.  Some of these children are so profoundly disabled that they will never have normal lives.  They will need care for the rest of their lives.  One would think that a mother or father might look upon them with disdain, but that’s not there at all.  There’s tenderness and love.  There’s patience and kindness in their voices when I hear them say, “Come on, sweet pea, we’re up!” And they push their contorted bodies in their wheelchairs in the direction of their appointment.

Sometimes I feel guilty because I don’t always feel tenderness.  Sometimes I feel exhaustion particularly on the days when I’m in pain.  I know that Grace is doing the best that she can do.  Sometimes I wonder if I’m doing the best that I can do.  Sometimes I think that showing up is the best that I can do, but, then again, I wonder if that’s true.  Could I have been more patient? Could I have paid more attention that day? Did I care for my other girls adequately? I suspect that self-doubt is inherent to parenthood.  It’s certainly inherent to humanity.

This morning as Grace and I were waiting for her psychologist to greet us, an adorable little girl hobbled by with a walker.  She had a cherubic face complete with chubby, pink cheeks.  She was still wearing her winter hat so her round face was framed in pink fleece.  She was tiny in stature looking to be only about 4 years-old.  Her legs were unnaturally bent as she put one foot in front of the other, leaning on her equally tiny walker.  She was smiling widely.  Her caregiver walked behind her looking pale and exhausted.  The little girl was talking to one of the hospital staff as she walked.  She then said loudly with a broad smile, “Yes ma’am!” Grace and I looked at each other and said simultaneously, “She’s so cute!” There was no denying it.  She was the epitome of adorable.

A bit ago, I heard a woman sigh loudly.  This hospital isn’t like other hospitals.  It in no way feels clinical.  It’s smallish and open in its design so it’s so easy to connect with other people.  I empathized with the woman.  “How long have you been here?” I asked her.  “Since 9,” she said with a yawn.  “Us, too.”  I then heard a familiar little voice.  “Mama, can I play a little longer?”  It was the little girl with the walker only now she was wearing a very little cast on her very little foot.  I asked her about it, and she was more than happy to tell me about it.  She liked it.  It made her foot feel better.  Her mother, on the other hand, was annoyed.

“Why did you get your cast today, Anna?”

“Because I didn’t wear my splints because my splints hurt,” she explained as if by rote.

Her mother looked at me and said, “We wouldn’t be here today if she’d have worn her splints.”

“Why does she need splints?” I carefully asked.  I didn’t want to be nosy, but, at the same time, parents talk to each other.

“She’s got juvenile systemic scleroderma.  She has to wear those splints.”  And then she sighed loudly and decided to be really honest.  “Actually, Anna, is not mine.  She’s my stepdaughter’s, but I am her legal guardian.  My stepdaughter thought it would great to take Vicodin throughout her pregnancy with Anna.  That’s why Anna has this rare, incurable disease.  That’s why we’re here all the time.  That’s why we’ll be coming here even more now.”

She picked up her purse and came and sat down next to me.

“We have to drive down here now from up North every week.  Used to be we were here once every two months.  Now, it’s once a week.  She gets chemo shots in addition to casting, and I give her the shots at home, too.”

“What will happen to her?” I asked.

She fidgeted with her phone.  “She won’t make it.  Her disease is progressing.  She may not make it to six.  She’s four now.”

I felt my heart drop to my stomach.  I wanted to cry right there, but if this woman could tell me her story and the story of Anna without crying, then I could hear it without crying.  I listened.  She told me that Anna had a brother, and this stepdaughter did meth while pregnant with him.    “He’s in respite care right now while I’m away.  You know, she doesn’t know.  She’s just as happy as can be even in all that pain.”

Anna brought me a book to read, but she tried to read it to me as is typical for a 4 year-old.  She talked to me about her dogs, and her mom showed me pictures of her dogs on her iPhone.  At 3 o’clock it was time for them to go.  They had a long drive.  I never got Anna’s mom’s name.  As she was getting her purse together and her coat on, Anna turned to me and wrapped her arms around me.  I grabbed a hold of her and with everything I could muster in my spirit I asked God to bless her and take care of her.  And then I let her go.  Her mother looked down at her and asked, “Are you ready to go, girl?” She smiled again, her chubby cheeks bunching, and said, “Yes ma’am!”

There are some things that are very hard for me to live with.  I am struggling to live with the fact that Anna the Precious will die soon, and it will be a painful death.  It is the definition of injustice.  This was preventable, and this is happening all over the world.  Children die every day.  I know that, but I just met one of those children.

It gives me perspective.  It helps me with my self-doubt.  It helps me appreciate what I have.  If Anna can get up in the morning and greet her day with such joy and courage, then I can, too.  If Anna’s perspective on getting her methotrexate (her chemotherapy drug) was: “Well, I just lie still and my mama gives me a shot of pee in my arm.  It doesn’t hurt so bad, and then I rest.  And then I play!”  (apparently, methotrexate looks like dark urine), then I can change my perspective on unpleasant things, too.  If Anna can face her trying circumstances with humor, then so can I.

I will think of her everyday.  I will pray for her everyday as well as her mother and brother.  And, I have something new for which to be grateful.

What am I thankful for today?

  • that I met Anna and her mama

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